Hello again...

So Caleb continues to have his on and off days with drinking. The on days are pretty good now, he will drink OUNCES of milk and yes I said OUNCES. It is amazing the day he started chugging Brian and I were shocked. Love seeing him drink. One step closer to getting that feeding tube out, but we have to get him to drink daily and maintain his weight.

We are still having difficulty trying to get Caleb to walk. Good news we found out about a place closer to home that does speech, physical, occupational therapy and other services. We are so excited taht something like this exists so close to home! Brian and I DEFINITELY want to do this for Caleb, but this therapy does require Caleb to go to the facility. Now, Brian and I will have decide if we should wait until spring to start this therapy due to it being flu season. We are going to talk about it and also get Caleb's doctors' opinions. I am so so so so excited about this opportunity for Caleb hopefully this will help him with his walking, verbalizations, sign language, etc. This will be so great for him!

Unfortunately, Caleb has ANOTHER cold. We are very puzzled as were he got this cold. The poor guy has a very runny nose, cough, and is sneezing like crazy. We are praying that with rest he will recover from this cold and will not need antibiotics! Come on immune system, show us you are working!

Also another new development for our family. We found out that Caleb is going to be a big brother! That's right I'm pregnant. The ultrasound shows twins! One of the twins is a lot smaller than the other. We were planning on seeing the high risk docs that we saw when we were pregnant with Caleb as we are considered 'high risk' and even more so now that there are twin and those of different sizes. So we will see them in a couple weeks.

So as you can see we have been busy!
I will update again soon!

God Bless you all!!

God Bless Caleb!!

Once again sorry for the delay in posts

Sorry for the delay in posts. Caleb and I finally got rid of the nasty cold we had. He seemed to do a lot better with it than I did. That is definitely an encouraging sign in regards to his immune system. Of course he did need help with antibiotics, but he fought of the cold. I am just praying we make it through the rest of this nasty flu seasons without anymore bugs.

A couple of updates:

Caleb had a couple days where out of nowhere he was drinking! One day he drank up to six ounces of milk! He never even drank when he was born so this was awesome to see. Unfortunately, the last two days he has had no interest in drinking so we are hoping he will get the urge to drink again today. I am going to work with him after writing this post, so we will see how it goes. Fingers crossed!

Brian and I took Caleb out with us about a week ago and had so much fun. We went to the store and then...wait for it....to Applebees. WOW, I can't even express how awesome it was to be out as a family at a restaurant. We wiped down the highchair and table and asked the hostess to seat us as far away from others as possible. It was so neat to do this. I think Bri and I smiled all the way through dinner. A cute little story while we were at Applebees: when we first sat down Caleb got a kid menu (which was neat as our kiddo could eat something off the menu) and he kept saying applesauce and signing it and we figured out he saw the apple on the kids menu. Cute right?!? He also met a friend, a lady, who he waved to and flirted with all dinner. Reminded me of when he used to flirt with all the nurses, his girlfriends, when he was in the hospital. We also go to see a a couple of friends while we were out. It was so nice seeing you all and thanks for understanding and not getting too close to Caleb! We love you guys!

Caleb has been mimicking Bri and I more, which is fun. We try to get him to say all sorts of things. Our favorite so far is 'butterfly' he sounds so darn cute when he says it! A lot of this mimicking is done without his hearing aid too so that is amazing in itself also. In regards to his hearing aid, we got it fixed about two weeks ago. We tried a local audiologist which we loved, Tri-state Audiology, and she was great! Caleb wore his hearing aid the first day after getting it repaired but now we are having a lot of issues with trying to get him to keep it in. He has never done this. Have any other parents with kiddos with aids dealt with this? If so, what happened? Any feedback would be appreciated!

Well that is a good amount of updates for now, there are many more. I will update again soon so please stop back soon! Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

We had a great Christmas and New Year

So what is the meaning of Christmas...not the amount of present under the tree and how much money you spent...it is that your family and loved ones are around you. We were blessed to spend our second year in row AT HOME as a family for Christmas and New Year's. What a great day. Caleb didn't open his gifts as he wasn't sure about it but he was very intent when I or Brian unwrapped his presents. Thank you to all the Santas that sent Caleb gifts too. You all are too too kind, thank you so much! I have included some pics of a snowstorm that came a couple days before Christmas, Caleb opening his gifts, and Caleb looking/playing with the Steeler tree we got from my parents.

Make an on-line slide show at www.OneTrueMedia.com

Unfortunately, a couple days after Christmas Caleb got very congested and we were not concerned as long as it didn't seem to bother him or get any worse. I, about two days after Caleb started getting congested, ran a fever and got very congested also. Well, this morning he woke up coughing or should I say barking like a dog or a seal. I walked into his room and he was sitting up in bed crying and coughing and trying to catch his breathe. Brian and I noticed his congestion had started moving lastnight and we were worried that maybe his congestion had moved to his chest. Our pediatrician is out of the office for the holiday so we decided to take him to MedExpress as we love all the docs there. They were great. We were so excited when we walked in and saw Dr. Burkland! He is not only an awesome doctor but a family friend! He said that both Caleb's and my symptoms are due to a nasty bug circulating around that is very similar to the flu. He listened to Caleb's lungs and said they sounded clear! Thank goodness. So they gave his a strong steroid via his g-tube that will hopefully help him with his cough and will help him get rid of his cold. I will post soon with updates on his cold.


Also, on a side note, some anonymous person is leaving unwanted comments on this blog. I now will get notifications when someone leaves a comment then if it is not that person I will post. So please don't be alarmed if you don't see your comment right away and PLEASE continue to leave you comments.

Thanks for checking in!!

God Bless you all!!

God Bless Caleb!!

Cookie Day

First thanks again for the suggestions on the crafts that I can do with Caleb! I got a lot of great ideas! Already started an alphabet word line. I will take pictures of it when I get it hung up and as we work with it!

Well it was a big day here yesterday. What a great day. I started the day by getting my hair done, much needed. Thanks Alana-it looks great, love ya tons! Then I went to the store to get some groceries. This was the first time that we did not wipe down the groceries, very weird as wiping them down with viral wipes has been the norm. So hard to break the habit even though you want to so much. It will take some getting used to. You become somewhat warped. You even think when you get the item out of the cupboard that 'oh this is one of those items we didn't wipe down this time', 'should I wash my hands'...you become very obsessive compulsive regarding cleanliness. We are adjusting...it will take time. I can't imagine how hard it will be when we stop some of the other restrictions that we are doing...baby steps...

Next was cookie making time. Brian was off so this worked out perfect. We did sugar cookies and peanut butter kisses and Caleb really like watching us decorate the cookies, he really liked to undecorate them. Another first! We had a blast.

God Bless you all!!

God Bless Caleb!!

Thanks for the ideas

I did receive some great ideas on some approaches and items to try to get Caleb to drink. Thank you everyone so much! HE LOVES TO EAT now so if we can only do that for drinking and get that feeding tube out I would be ecstatic. I can't believe that when he first came home we dealt with his central line, IV, too. WOW! What he has been through. I pray that he can continue to make improvements and keep fighting. I also pray that his immune system continues to improve. I am gonna write his docs at Duke today to just get some feedback. We are still living in complete isolation for his safety, but just want to see if they have any suggestions on anything that we may be able to do with him now and if we can take him anywhere.

Also, if anyone has any craft ideas that I can do here at home with Caleb I would greatly appreciate. You can only play with Playdo and coloring books for so long. So any suggestions for crafts would be great. I think he and I will make cookies tomorrow while his daddy is off. OH and also I am going to get my hair done tomorrow! WOHHOO so exciting, I haven't had it done in about five months so it could use some work.

Well, I gotta go, I will post pics of some cookie making tomorrow!

Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

Advice and Suggestions Much Needed!

So as many as you know, Caleb has an oral aversion due to what he has been through. We have in the past year been able to finally get him to eat, however, we cannot get him to drink. I am asking for any advice from others on what worked for your child on getting then to drink (i.e. sippy cups, straws, types of juice, therapy, etc) Please help! We want to get this feeding tube out of Caleb and get him drinking on his own!

Thanks in advance!

God Bless you all!

God Bless Caleb!!

Second H1N1 shot but no second round immunizations

So I took Caleb to go get his second H1N1 shot yesterday. The doctor wanted us to wait another month for his second round of immunizations though. He did great, he is now figuring out that every time I take him there he gets a shot, so he got pretty upset as soon as I took him back, poor guy. But he is also smart enough to know that as soon as I pull his rain cover 'germ shield' down he is safe from anyone touching him and calms down immediately. He is too cute. What a smart boy! It was freezing cold, windchill was below zero when we went, yikes. Of course, I got the typical comments/stares on the elevator when we were in there regarding him being under the shield. One gentleman stared and said, 'well that's interesting' I said 'yea, he was born without the part of the body that makes your immune system so that is how we protect him from germs' he then said 'wow, what are the odds'...I then said 'well he actually has two very rare syndromes, that makes him the sixth case in the world'. He then said 'wow you all should play the lottery.' uh...Yeah...ok

Anyway, Caleb is becoming quite the mimicker lately. He is trying to say words that we say. So that is fun. We especially like that we know that he now recognizes who 'ho ho' is, Santa. I am not sure he totally gets what Santa does, but one step at a time right?!?

Also, I am excited that we will soon be able to see our families again. My mom and dad are planning to come this weekend and the countdown is on for the rest of the family of when it will be safe for them to come and visit. We are so very excited!

I am still frustrated with the isolation precautions. I know it is what we have to do to protect Caleb, but all of us would like to do things outside of this house. I also know that most importantly Caleb would benefit and prosper so much if we could get him out of this house and do different activities. Again I know in time these things will happen. But quite frankly the phrase 'in time' is not specific enough for me anymore.

God Bless you all!!

God Bless Caleb!!

An outing leads to some frustration..

So we HAD to get out of the house lastnight. We all are suffering from SEVERE cabin fever. So we hopped in the car and went to cruise through the festival of lights (for those of you not from the area-a local resort has Christmas light displays throughout the park that you drive through and look at) Well...Caleb was shocked when we went outside but got excited when we got in the vroom vroom, his way of saying car. {I am happy he was excited to see the car, as usually the only time we go out is to take him to the doctor.} So off we went the three of us. Well, halfway throughout the lights we spent most of the time talking VERY loud to Caleb as he was trying to go to sleep! It was so so nice to get out of the house. So nice! It is a little bit of tease to go out though as we don't go out.
Well speaking of going out, Caleb will be heading to the doctor on Thursday morning to get his second round of childhood vaccines and to get his second H1N1 shot! I am so happy to hear that the H1N1 virus, for now, seems to be not as widespread. Hopefully it can stay that way. I know the seasonal flu is soon to start spreading, but Caleb has gotten the seasonal flu shot so I am a little less freaked out about that one.
So I have to start to wonder, when can we start leading a normal life? I wonder if anyone will ever give us the 'go-ahead' When can we go to to a department store with Caleb?, when can Caleb go see Santa?, when can we go get professional pictures taken of Caleb?, when can we take Caleb to the grocery store?, when can we stop wiping down all of groceries?, when do we not need to take showers every time we leave the house and come back in?, when do we stop having to worry about the mail as 'dirty'?, when can Caleb go to some therapy groups? When can we have normalcy? I know I don't usually show my frustrations on here, but it has been over three years now and wow three years...Yes I know it is better than living in a hospital room, but when can we start doing some normal things? I have tried not to be somewhat jealous of when others can do things but it is tough. I see pictures of other friends' kids with Santa or getting their professional Christmas portraits taken and it is hard. I would love to take Caleb to a movie or to a parade or to a local Christmas show, but we can't....When can we? I just know that Caleb is missing out on some awesome experiences...I know in time...but when?

Since Caleb can't go see Santa I brought Santa to him...for those of you who have kids try this out. Check out Caleb's video http://portablenorthpole.tv/watch/391301f6b0b943ca023324bf2593dea8. If you want to make a video for you child go http://portablenorthpole.tv/home

Sorry just would like to start having some normalcy...

God Bless you all!!

God Bless Caleb!!

Vaccinations, Train, Ornaments

Well, thanks to a good friend, Nicole, our families have been given the opportunity to get the H1N1 vaccine so they can come to the home and visit. They couldn't come until they were vaccinated as it was not safe for Caleb. Well the last couple family members were vaccinated yesterday, so the countdown begins as to when they can come visit. NINE days and counting. We are so excited to see our family again. We have been in seclusion, and I must admit it is Cabin Fever times a million. We are so excited to see you all! We miss you so so much!

Bri got a hold of his old train from when he was little and we weren't sure how Caleb would take to it, but he did! It was so cute! The boys set up the train and Caleb got used to it pretty quick! He even takes the cars off the track and plays with them, big step sensory-wise as sometimes this warming up step can take a couple days!

Caleb and I made Cinnamon Christmas ornaments yesterday and he didn't really get into it, but he did watch. I don't think he wanted to touch the 'dough' as it was a weird texture. I did try to get him to help me roll the rolling pin and he wasn't having that either. At least it was something different for him to do/see. I have got to get my hands on more craft-like things like that for us to do!

God Bless you all!!

God Bless Caleb!!

Thanksgiving

Well it isn't hard to figure out what we were thankful for this Thanksgiving! We are so thankful that we spent this Thanksgiving together under one roof, in the same state, in our home, together. What a simple but enjoyable day. To top it off. . . we cut the turkey very very small for Caleb and he ate turkey as well as everything else that we ate! He ate as much as me! It was so awesome to see. Thank you Lord for allowing us to have such a wonderful day together.
Unfortunately, we were unable to spend the day with my parents, Brian's parents, our grandmas, or my brothers and their families until they are immunized to H1N1 or Caleb is completely immunized, whichever comes first, before they can visit. We miss you all and love you very much.
Happy Thanksgiving to all of you. Please keep all of those in your prayers that are spending this Thanksgiving holiday like Brian, Caleb, and I did in a hospital praying for their loved one's recovery. Also, God Bless all those who are serving our country and who are away from their families this holiday.

God Bless you all!!

God Bless Caleb!!

I'm Alive and Well

So many of you know that Brian and I are HUGE Kenny Chesney fans. So when I heard his new song, I'm Alive (playing in the background), with one of our other favorite artists, Dave Mathews, I was in awe. It reminded me of everything Caleb, Brian, and I have been through. It feels like it is our theme song. I tear up every time I hear it, remembering all that we have been through. Never take a breathe for granted....

Here are the lyrics:
I'm Alive lyrics

Kenny Chesney, Feat - Dave Matthews

So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well





God Bless you all!!

God Bless Caleb!!

Shot 1

So I took Caleb to go get his first of two shots for the H1N1 vaccine.

Taking him by myself, without Brian, is very stressful to go alone as I have to keep myself 'clean' so I can interact with and touch Caleb when needed. Therefore, I carried a lot of antibac and viral wipes. He was under his rain cover, to protect him from respiratory droplets and to keep him safe. He doesn't tolerate the pediatric masks at all, I wish he would but the rain cover also prevents him from touching stuff too. I used the viral wipes to open doors and touch elevator buttons. Then, I tried not to rub up against anything so I could stay 'clean'. Then when we got home I gave him a bath and I got a shower after I bathed him. An outing is nice, but is very stressful and a lot of planning goes into it. Thanks everyone at Dr. Archbold's office for opening the doors for me and such once we got up there. You all are awesome!

Caleb can get the second shot in twenty eight days. Ten days after the second shot he will have full coverage...so we have to pray we can continue to keep him healthy. Brian and I also got vaccinated and ours was the normal 'one shot' since we are adults. I am praying that Brian and I can also stay healthy for the next ten days (estimated amount of time for your body to build immunity to this virus) as our bodies build immunity to the virus. If we can do that, then we can have even a better chance of keeping Caleb safe from the H1N1 virus. So we are praying hard. Needless to say, Brian and I are VERY VERY stressed right now regarding this virus and protecting Caleb. We thought we were easing somewhat towards normalcy and then this virus came along and turned everything upside down. We have stopped all visitors from coming by until either Caleb is completely vaccinated OR they are vaccinated and well past the time the immunity should kick in to this virus, whichever comes first. We will continue to do all the other precautions (wiping down groceries or anything else that enters the home, shower when coming back into the home after leaving, etc.) we have been doing to protect Caleb throughout this flu season.

Please Lord watch over all three of us and keep us healthy as our bodies immune systems build immunity to this virus so we can protect Caleb!

God Bless you all!!

God Bless Caleb!!

Finally

The shots have finally been droppped of at the doctor's office! YES!

Caleb will have to get the vaccine in two seperate shots as per any child of his age. Therefore, he won't have complete antibody/immunity coverage for about two weeks after his second shot, which can be given a month after the first shot. I will be taking him tomorrow to the doctor's to get his shot! I am taking him into the office early, so there won't be any 'sick' kiddos around. So nervewracking...germs....uh...so nervewracking. The other good thing is that Brian and I are also getting shots too, so hopefully we can protect Caleb from anything being brought into the house. Caleb's doctor is awesome, as they are also staying late today so Brian can go in and get his shot tonight as he can't go with us tomorrow as he has started his NEW JOB (he is now the Assistant Manager at the AT&T elm grove store!-CONGRATS BABE). I am so happy that Bri is getting his shot, as he is nervous as he interacts with many people daily, so I am praying also that he can stay healthy while his body build immunity to the H1N1 virus...Please pray that we can all stay healthy and keep this nasty bug away from Caleb as we all build immunity!

God Bless you all!!

God Bless Caleb!!

Still waiting

So we are still waiting on the H1N1 vaccine for Caleb. It is absolutely amazing to me how this gentlemen, keeps 'forgetting' to drop off the vaccine to Caleb's pediatrician's office. My brother actually got the Mayor involved and the Mayor had to call the Health Department Administrator to remind him to drop off the vaccine, so we will see if he drops it off today....Amazing....we have been waiting for a month now for this shot....absolutely ridiculous....

Please pray that Caleb can continue to stay healthy and can get this shot ASAP...

God Bless you all!!

God Bless Caleb!!

We had one...and then...

Well...I got a call yesterday from the administrator from the health department telling me they had a shot for Caleb and he could get the vaccine today or next week depending on when it was convenient to be administered. Then as quick as we had a vaccine for Caleb it was gone...you see. the gentleman didn't realize Caleb was three (not like we hadn't discussed his age in previous conversations) and the vaccine he had was for 4 year olds or older....AMAZING. So there is supposed to be a H1N1 clinic next week, the one he wanted us to take Caleb to originally, and he is hoping that he will get a vaccine next week for Caleb that can be administered, however he is not expecting us to go to the clinic now to get it administered....

Thanks to all for your continued efforts to try to get Caleb a vaccine. You all continue to be so awesome to our family! I hope we can get him vaccinated soon as this virus is running rampant in our town, just like the rest of the country.

Everyone please stay healthy!

God Bless you all!!

God Bless Caleb!!

H1N1 shot update

So I just got a call back from the guy at WV Immunization Complaint Hotline, and he said that he may be able to get a vaccine for Caleb by the end of this week early next....please pray!

God Bless you all!!

God Bless Caleb!!

Does it really have to be this hard...

So I am sitting here tears as I am typing this...I am so mad and so frustrated...I have been trying to get Caleb a H1N1 vaccine for weeks now and it's just not happening.

I wrote Shepard Smith with Fox news this will give you an idea of what has gone on:


Dear Shep,

I know you are a busy man, but I am writing you to see if you can help in any way. My son was born with two very rare syndromes, CHARGE and DiGeorge. The Charge effected his brain, heart, hips, ears (deafness), etc and the DiGeorge effected his immune system (this syndrome is one in which the child is born without the part of the body that creates the immune system). There is one place in the world that does an experimental transplant that after it grafts (which can take up to two years) will provide the child with an immune system. Our son spent two years straight in the hospital and we almost lost him a couple times. He is now three and he, myself, and my husband are a family again AT HOME. Caleb still has to live in complete isolation in our home, until his blood work shows his immune system is working. He is like the 'bubble boy'.



So his doctors at Duke suggested he get vaccinated to the H1N1 vaccine as he is in the 'high risk' category. I called our local health department weeks before to get him on the 'list' and the secretary said their was not such list and to just call back. I continually called back and got the same story. One of the mornings that I called I later got on our local news station's website and saw a news story saying that the local health department was scheduling the first immunization clinic. I then called back the health department and asked to speak with the administrator. He at first seemed like he was going to help me and send a shot to our local pediatrician so Caleb wouldn't have to go to one of those mass clinics. He then send he would send her paperwork and I should hear from the pediatrician next. Well after not hearing from the pediatrician, as I know they wanted to get him vaccinated as much as I do, I called them. They indicated they did not get any paperwork. By this time many schools in the area are holding mass clinics for children without pre-existing health conditions. Please don't get me wrong, I think it is great that other kiddos are getting vaccinated, just don't understand why my son who is in one of those '5 high risk groups' is not a priority. I called the health department administrator back today and he was nothing but rude to me, quite different from our previous conversations. He said he didn't send paperwork to the pediatrician, that she would have to enroll to be able to administer the shots then her application would have to be reviewed by the state. I then said that seemed like it may take too long and asked if I could just bring him down to the HD to get him vaccinated (which is not the safest of options) so he could get the shot. He then said after he took a bite of something and started eating on the phone, that I could bring him to a mass clinic for his age group at the health department. I asked 'could I bring him a little early to avoid the crowd' He said 'you can come early to get in line early' I was shocked at the lack of emotion. I called the WV Immunization complaint hotline and the individual I spoke with said that he was aware that after calling the HD (after getting another complaint similar to mine) that the HD explained that they were vaccinating some kids in schools because of breakouts. I totally understand that reasoning, but my son and a couple others fall withing CDC's guidelines....when did local authorities have the right to change government guidelines? Why am I fighting so hard to get my child, who should have been vaccinated first to get a vaccine. I couldn't even take my son to one of those mass clinics as the nasal form of the vaccine would be present and he cannot be around that. I am just at my wits end. I am scared. We almost lost our son to a very serious lung infection (another fact that the local health department is aware of) and the shot is there, yet I can't get him vaccinated safely?!? I have know become aware of other families in the area who have family members who are in the 'high risk' category too and can't get their family member vaccinated.
If you can help in any way I would so appreciate it

So I just got off the phone with the WV Immunization Complaint Hotline and so far nothing promising coming out of that either...

God Bless you all!!

God Bless Caleb!!

Please Pray for this Little Boy Alex and His Family

Hello everyone. I got an email from my friend Jen and one of her co-workers family members sent her an email with the following:

All – I am writing this morning to ask for your prayers. My niece Amy & her husband Eric have two children, Alex (4) and Abby (21mo). Alex was complaining on Monday that his neck hurt & was walking a bit funny. However, after dinner Monday, he went outside to play in the yard with the kids in the next door. During the night he was up a lot complaining how his neck hurt & he spiked a fever. My niece got dressed for work Tuesday, but took him to the pediatrician to see if it was an ear infection or something. They sent her to the hospital with Alex. Children’s began to run all kind of tests on him. A few hours after being at the hospital, Alex lost all feeling and motion from his chest down. They ran all kind of tests on him eliminating, meningitis, h1n1, guillain-barre syndrome. Finally close to 7pm they came in and told my niece & Eric that he had a mass in his spinal cord & needed immediate surgery. My sister & brother-in-law were at the hospital at this time & the neurosurgeon explained the procedure and that Alex had a lot of bleeding in the spinal cord. The way he explained it to them, Eric asked “are you telling us this is life or death?” The neurosurgeon responded “Yes”. After 3-4 hours of surgery Tuesday night, they determined Alex had a mass of blood vessels in his spine, removed them, put titanium clips in his spine & brought him to ICU. He was on a ventilator. The good news was that it wasn’t bleeding as bad as they thought & he survived the surgery. Wednesday, he was very heavily sedated but was able to blink with closed eyes & nod his head. He was given a feeding tube on Thursday & they tried to remove the ventilator after his oxygen levels increased. Thursday the pathology report came back & showed no tumor cells or cancer in the blood mass they removed. He showed signs of reflexes in his arms & toes. We thought he was making good progress, plus he was able to urinate which they weren’t sure he’d be able to do on his own. We knew he still had a long road ahead of him with therapy but were feeling better about his prognosis. Unfortunately, Friday afternoon they had to put the breathing tube back in because his oxygen levels fell. The reason I’m writing now is about 3:30 this morning he showed signs of complete paralyzation again and his fever spiked to 102. They performed another MRI because they were afraid the mass had returned. Thankfully the MRI was clean but did show excessive swelling. He has been heavily sedated and will be in ICU for a few more days. They still don’t know if he will ever have use of his arms or legs again, currently he has no reflexes at all. Nor do they know what caused this mass. They are testing for blood disorders and will be checking my niece and her husband.

Please add this sweet boy and his family on to any prayer list and keep him in your prayers! You can keep updated on his blog, https://www.carepages.com/carepages/ChuckandBear. You will need to become a 'member' of carepages if you are not already one. It is free, you just need to create a screen name and password. Thanks all for your prayers for this little boy and his family!

God Bless you all!!

God Bless Caleb!!

Growth Spurt?

Okay so yes I am going to post this....Is it a growth spurt or what?!?

So as you all know Caleb is our first child and we have delved into the world of eating (so we are trying to figure out how much a child of his age would typically eat)...A wonderful world! He is finally eating by mouth and now lets me know when he is hungry by signing eat. Of course, we started off slow but he now eats three meals a day with snacks in between and this is all based upon when he signs to me that he is hungry. Here is a sample of what he ate yesterday:

Breakfast: Bowl full of Oatmeal

Lunch: Toddler Tray with 3/4 cup of a pudding snack

Snack (hour after lunch): another pudding cup

Dinner: another Toddler tray

First snack: HUGE bowl of ice cream

Second snack: Two toddler fruit bars

He signed that he was still hungry after the second snack, but I thought that was more than enough for a child his age?!? Am I wrong? Yoi this kiddo can eat (LOVE saying that)!

He still cannot chew so we have to cut things up for him and we are working on the drinking. I did get him to take multiple gulps of apple juice yesterday and the day before, so hopefully this is a sign too that we are getting close to getting him to drink. We shall see!

God Bless you all!!

God Bless Caleb!!

Fives

So another thing we have been trying to get Caleb to do for months is to give fives (high fives). We have been working on this for awhile now and lastnight I asked him for 'fives' and he did it!! I wanted to cry! I asked for fives and he did it! Love you Caybay! Keep up the great work!

God Bless you all!!

God Bless Caleb!!

Two Blog Posts in One Day......

means its gotta be something good.

As you all know we have been working with Caleb on trying to get him to drink. We try at every meal and get around 5-6 sips in his mouth, which usually accounts for an ml or two. Well at dinner tonight he did great! We still hold the cup and put the spout in his mouth and tilt the cup. I figured out tonight if I gently put my hand on his forehead it somehow calms him to take the small amount that I pour into his mouth. I am so ecstatic to say he took a little over an ounce of apple juice tonight with dinner. AN OUNCE A FLIPPIN' OUNCE! WOOOO HOOO CALEB! This is the most fluid Caleb has EVER taken by mouth! WOOOHOOOOO!

God Bless you all!!

God Bless Caleb!!

Another Milestone

So, we have hit another milestone.

Because Caleb's IgG levels were in the normal range, we were given the O.K. by Dr. Markert for Caleb to start getting his vaccines. However, NO live vaccines, Chicken Pox and Hep A, can be given.

We were so excited that we hit this stage in his Immune System Development! So Tuesday we took Caleb to his Pediatricians office to get his first round of shots. He got his DT&P, PCV, HepB, Hib, Polio, and his flu shot. I felt bad for the nurse as she was so upset she had to give him four shots! He did great! Of course he was upset, but he was such a big boy. We were very excited to get him there to get his shots, but, at the same time were very nervous to take him out in public as we have heard of some possible H1N1 cases in the area. That vaccine isn't coming until mid October to early November. I wish we could get our hands on that vaccine ASAP. But we are trying to be patient. None of us can get the nasal form of the vaccine as it contains some of the live form of the virus in the vaccine. So we nervously wait for that vaccine to get to us so we can get Caleb and ourselves that shot so we can protect Caleb. So scary!

As far as his development.

• I love that I get to say this...but he eats sooooo much. I love saying that! He eats all three meals and snacks! We have dropped another feeding tube bolus out of his schedule as we are hoping that what he takes by mouth replaces the calories that he would have gotten by that bolus. We are still working on drinking. He seems to be a little more receptive to the sippy cup being placed in his mouth. So I hope that will come along like his eating did. It was so great this morning I went into his room to get him ready for the day and the first thing he did was sign 'eat'. He does that when he gets hungry during the day too! So awesome!


• Walking: well....not much going on here. He absolutely hates that walker that we got awhile ago. I was looking into the possibility of getting him a gate trainer walker. But his PT is not for the idea. I just do not know what to do regarding the walking. He can 'opt' out of the other walker by sitting and he doesn't want to hold your hands and walk either. The gate trainer style walker kind've braces them in so he can't opt out. I also think this would help him work on his balance. These walkers start around $1,000, so we are looking into other therapy ideas...open to any suggestions...


• I have been trying to get Caleb to draw and color for months! Every couple days I would take out the crayons and draw and then see if he would draw or color and no go. This routine went on for MONTHS! Then low and behold, last week he started to color! I wanted to scream! He loves crayons and his aquadoodle now. A couple days ago, he spent the whole day coloring! He is now at the point where he draws something and then signs to me what it is. Love it!


• He is pretty good with his colors. For example, if I ask him by signing 'where is the red lego?' He finds it and we do that for all his colors. We are working on counting and shapes. I am trying to find different ways daily to teach him these concepts.

Well that will do it for now! Have a great day!

God Bless you all!!

God Bless Caleb!!

IgG Level is Back

Well here is the email I received today:

'Well, our numbers came back only a little better--his IgG was 483. However, Dr. Markert feels that as long as he is in the normal range for his age (and he is--it is 391-1070) that's good enough so no more IVIG. (She feels the reccommendation for >600 is actually more applicable to > older patients.) We can check it again in a couple of months just to make sure it doesn't drift down over time. His tetanus antibodies were normal so she says he should proceed with his normal childhood immunizations (BUT NO LIVE VACCINES). Please ask the pediatrician to give all doses of the killed vaccines (as opposed to the "catch up" schedule which omits some doses based on age) And as we discussed, he should get the seasonal flu vaccine and the H1N1 vaccine when they become available. Please let me know when you schedule an appt with your pediatrician as we will want a blood sample just prior to his immunizations and I will ask them to repeat the thyroid profile. The one in the hospital was reported as "quantity not sufficient".
Stephanie'

So we of course have email them back with some questions! But this is great news! I don't have to stick him anymore every week for the IVIG infusions! He is going to get immunizations?!? Really?!? I never thought this day would come! I can't wait for more exciting milestones to come for his immune system! Keep working Immune System and Thymus! One more step closer to normalcy! Go Caleb! We are so proud of you!

God Bless you all!!

God Bless Caleb!!

My Big Boy **Updated**

After all the aversions...who would have thought?!?! Yes, we still will be working on drinking as he hates that, but he used to hate eating too and would be so scared of it! Look at this!



**Update: So not only did Caleb feed himself lunch, he fed himself dinner and all of it. Also, he feed himself with not one spoon, but two! I was shocked. I gave him two spoons to see if he prefered one over the other and he liked both! Too funny! He did let any go to waste either. He also ate TWO pudding cups for his bedtime snack! No failure to thrive anymore! He wiped his mouth and hands too when I asked him! Wow Caleb you are awesome little boy! Now, I just need to continue working on getting him to drink.


Thank you all for enjoying all these milestones as much as we do!**

God Bless you all!!

God Bless Caleb!!

Waiting game

Still no update on the IgG level! I am not really expecting to hear anything though until earliest on Wednesday! So we are praying hard for an awesome IgG level.

He is healing nicely from his surgery. You can definitely tell that he is still sore from the surgery but the incisions look good so far and the bruising is lessening.

We have met all of Caleb's new therapists through he school system. I hope and pray that they can provide the appropriate resources to help us work with Caleb and his delays.

He is getting more and more mobile everyday. He is climbing all over the place. Now if I could only get him to walk! We are looking into walkers that Caleb wouldn't have the possibility to sit down, that somehow we could 'brace' him into his walker. The one he has now, isn't working. He just sits down when we stand him up! Hopefully, we can find one that will work and will get him mobile.

I continue to work on different foods with Caleb and he is doing well. So amazing our little boy is getting better and better every day eating. We continue to work on the drinking. He definitely has a fear of drinking and I continue to work on that with him.

We are still waiting on flu vaccines for Caleb. He is on the waiting list at his pediatrician's office for the regular flu shot. As far as the H1N1 vaccine, it isn't even available until mid October. I called the local health department to see if I could start whatever paperwork is needed so Caleb could get his shot as soon as they get the vaccine and the lady was of no help on what I need to do to get him a vaccine.

Well sorry for the quick update but little man is into stuff and I gotta go! Have a great day!

God Bless you all!!

God Bless Caleb!!

Bloodwork

So the immune level we have been waiting on came back. Children's ran this lab and was to send the info to Duke. Please read the email I got from Dr. Markert's head nurse, who is also a good friend, today below:

Dear Sarah,

I spoke with Dr. Rao this morning about Caleb's labs. The IgG level was reported at 444, which is low but there was a disclaimer that they had "insufficient sample to properly run the test so the result may not be valid. " So basically, it doesn't really tell us anything. However, I had frozen away some serum from the blood sent to us so I will have them run an IgG on it here and we'll see what we get. I think they run the test on Mon Wed Fri so I may have some results by the middle of next week. So sorry, I know the waiting is killing you but I want to make sure we have a valid result before we act on it either way.

So...here we are...I did some research and the normal range that I found was 620-1400. I pray that the result from Children's is wrong and that his IgG (major antibody found in the blood that fights infection) level is not really that low.

I will post the Duke IgG level as soon as we get it!

God Bless you all!!

God Bless Caleb!!

Surgery

Well yesterday was a very long day for all of us.

We found out early afternoon on Monday that Caleb was going to be the first case on the OR schedule. Which was great news for us as: 1. this was the first surgery that we had to deal with Caleb possibly getting hungry during the wait as he now eat some by mouth and 2. that hopefully we would get home early as we live about a little over an hour away from CHP.

So we got up at 4:00 a.m. yesterday morning so we could get on the road by 5 as we had to be at CHP by 6:30. This surgery was at the new Children's too, so we also had to realize that we would not be used to the flow of operations, waiting areas, etc. We got there and checked in and of course we got the normal stares, as our child is in a stroller covered by a rain cover to protect him from respiratory droplets. It is very hard to put a pediatric mask on Caleb now as he is older and rips it off almost right after I put it on.

So we got him back into pre-op about 7:00. (*The subject of the reverse isolation precautions did not go as well as I had hoped. I think it was probably easier to enforce when he was inpatient as when he was inpatient they had a HUGE note on his chart about the precautions and when the nurses would take him to pre-op when he was an inpatient they would make it very clear about the precautions and thus others continued the information trail when they moved him throughout the hospital. So it could have been better as far as the isolation precautions for Caleb*) The surgery was supposed to entail: a look at his ears and new tubes as children with cleft-lip and palate will always need tubes, circumcision, blood draw for Duke for Immune bloodwork, and to pin down a undescended testicle (testicle is sitting a little high. They pin them down so the normal testicle exams can be performed accurately). About 7:30 we had signed all the consents. I felt bad as Caleb started to sign 'eat' obviously he was hungry. As bad as it was that he was hungry, it was exciting at the same time that he was signing that he was hungry as this is the first surgery that we had to deal with the fact that Caleb may be hungry as he has started to eat by mouth since his last surgeries. Around 7:45 they asked us (so they could limit the exposure to Caleb) to administer some Tylenol and Verset (spelling?-a medicine to help him relax) into his G-Tube/feeding tube. The pre-op Verset was new to us as in the past Caleb was in-patient, had an IV, so they would administer the relaxation meds when he got down to the OR. So it took about 10 minutes and Caleb was RELAXED. It was sad yet cute at the same time. He seemed drunk. So 8:30 they took Caleb to the OR. We got to walk with him to the OR as we have done in the past. Caleb has been through so many surgeries I can't even count: open heart, gall bladder removal, multiple sets of tubes, multiple line placements, Thymus transplant, two separate Nissan wraps (stomach surgeries), two separate shunts on his brain placed, just to name a few. This surgery wasn't any easier when I had to leave him. Even though he was relaxed he kept looking back at me and Brian when they were pushing his crib down the hall. It broke my heart. So once we checked into the waiting room, Brian ran down to the cafeteria to get us some breakfast. While Brian was gone our wonderful friend, Dr. Otteson, came out to let us know he was done with Caleb's tubes. I was shocked at how quick he got the tubes done. He said that Caleb did great with his part and his ear canals actually were bigger this time so Caleb didn't make Dr. Otteson work so hard to get this set in. Dr. Otteson has put the other sets in and Caleb has been known to have very narrow ear canals and we weren't sure if this was CHARGE related or typical age-related canal size. So this was a good sign that the canals seemed bigger. He then said that they were trying to find a vein to draw his blood for Duke. He said 'boy that is a lot of blood they want' and it was. I heard the order and that was probably the most blood to date that they needed for Duke. I used to draw the blood, when he had his central line at home, and then I would draw about 4 tubes. (*I later found out this order was double the amount and they stuck him about 18 times to try to get all the blood) So I had assumed the next part of the surgery had started. About 5 minutes later I heard the gentleman ask another set of parents if they were the Hlebiczki family and I let him know I was. He then told me that the OR was on the phone and needed to talk to one of the parents. My stomach dropped. They got the Urologist on the phone and he said that everything was find but now that he had been able to a more thorough exam he noticed that both testicles were a little higher up than he liked and he would like to pin them both down while he had Caleb under GA (general anesthesia) now rather than waiting to do it in a separate surgery. So I consented over the phone and they proceeded. Brian came back shortly after that happened and I told him the updates. About a hour and half later the surgeon came out and let us know that he was done and that Caleb did well and they decided to do a block (numbs the area where they operated) to help with the pain after the surgery) as they did more than planned. We waited about 45 minutes longer and we were able to go back to be with Caleb in recovery! The new hospital is so much nicer. In this hospital they have isolation rooms so we were able to be with Caleb during recovery as before they had to recover him in the OR (as their recovery room was one big room and that doesn't work with the isolation precautions)with an OR nurse and we couldn't see him during then as we can't be in an OR. He was still asleep and we got the normal run down of what they did. We got to look at what they did and I cringed. He looked like a pin cushion and sore. Thank goodness for that block as he was really numb. We then moved to stage two recovery and we had to feed him 4 ounces via his g-tube before we could leave. He was very cranky at first, but we think that was the anesthesia as he was numb due to the block. We finally were given the OK to go home. We couldn't believe it! WE GOT TO GO HOME! We never had done that!
We got home and Caleb acted like nothing had happened in that regard. We had assumed by then that the block had worn off. Well, not so much. I found out this morning that the block must had lasted longer than what we though because the poor guys is very uncomfortable this morning. I have cancelled all his therapy for this week and I am letting him chill and recover!

So I will update as much as I can! I want to thank you all for the prayers! I got so many emails and texts yesterday regarding Caleb! We love you all!!

Thank you all so much!

God Bless you all!!

God Bless Caleb!!

Hard to Believe It's Been Two Years

It is so hard to believe that it has been two years since Caleb's Thymus Transplant! Happy Transplant Anniversary Caleb, we are so proud of you! Thank you Dr. Markert for giving our child this opportunity! We will never be able to thank you enough! God Bless you and your team! The picture below is Dr. Markert and Caleb.



Below is the video I made after Caleb's transplant! Wow brings back memories. The wait for Caleb's thymus was the longest wait to that point for any patient that was at Duke. We even had one donor before the one he got that we thought was going to work and then failed the last screen test. Usually, when it passes all the other screen tests it passes the last, but not that time. So when the day FINALLY came that Caleb was gong to get his Thymus..I remember when they were pushing his crib down the hall to take him to the OR for his transplant the nurses walked along side his crib with noise makers and bubbles. It was so surreal. We are so proud of you Caleb you have battled so hard keep fighting little man!

Make video montages at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Surgery and Upcoming Flu Season

Well Caleb's surgery is less than a week away and this will be 'new' for us. This is supposed to be an outpatient surgery, but that is all up to how Caleb feels after surgery and if he lets them extabate (take the breathing tube) him after the surgery. So, I had to contact his doctors today to ask them if they would mind contacting the relative departments (pre-op, post-op, etc) about his isolation precautions due to his immunosuppresion. Unfortunately, this always seems to be a battle and sometimes some doctors and nurses feel they are above these rules and regulations. So I hope if we can get some early notifications to the respective areas it will be less stressful and safer for Caleb.



I am still trying to find out where I can get a H1N1 vaccine for Caleb as it seems like this may be a little hard to get our hands on one for him. Once again, his case is so rare, that we will probably need a lot of doctors letters and phone calls made to explain why he needs this vaccine. I am starting to get nervous about this upcoming flu season as now we have this H1N1 virus out there. I try not to read or listen to any media coverage about the virus. I am very aware that flu in general is very serious and should never be overlooked it is just even more scary when your little one has immune issues. I hate flu season.

So with flu season approaching, it is starting to dawn on me that our trips out, even though there weren't many, will be very limited. This is hard as I already have cabin fever and I am sure Caleb does too! I feel bad for him as I saw how much fun he had interacting with his cousin at the beach and I know we will have to eventually halt all those visits too to protect Caleb. I just know Caleb would benefit so much if he was able to interact with other children. I know in due time...

Well, time for a bolus feed....

Also thanks for the prayers for my mom-she is home now recuperating and our little friend Eva who is now also home recuperating. Please continue to keep them and our little friend Moriah and her family in your prayers!

God Bless you all!!

God Bless Caleb!!

I'm out of my funk

So...
I was talking to Duke today regarding scheduling the IgG level draw and we are going to try to get it done while he is at Children's on the 15th for surgery to avoid multiple sticks. While sending emails back and forth I inquired about the rest of Caleb's labs as I knew Dr. Markert, took the report with her over the weekend to review.

She sent me the following in an email:
'Dear Sarah,

Flow (T cell numbers) and proliferation (T cell function) both looked great. The report states that the T cells and naive T cells are stable but in fact the naive T cell numbers continue to increase. It is a beautiful essay. Caleb was better than the controls on some of the functional assays.

Yours,
Louise'

I actually had to read it over and over again. To believe what I was reading. Caleb is better than the control on some numbers?!? Which ones, I don't know, but some he is better than the control. I am a mess. I have to say I have been in one heck of a funk the past few days and this is exactly what I needed to get my out of it. `Hallelujah! Oh wow! WOW WOW WOW! I am praying his IgG level will look 'just as beautiful' !

On a side note: she does want us to get him vaccinated to H1N1 so now I have to find out about the special process to get him a vaccine in time!


Special prayers for my mom tomorrow as she has a knee replacement done and for our little friend Eva, see the link to her page at right, as she just had hip surgery today.

God Bless you all!!

God Bless Caleb!!

Immune Bloodwork Clarification

So I need to clarify what is going on with the immune bloodwork as many people are asking questions and I just feel I can explain it here....

So over three months ago I got a call from Duke explaining that due to some new research they were going to stop Caleb's Immunoglobulin infusion (pseudo-immune infusion) and Bactram (medicine to prevent him from getting silent pneumonia) and see if he could maintain his IgG levels on his own (IgG: the part of the immune system that fights bugs). They indicated they would wait three months and draw the blood and check. If the bloodwork looked okay then he would stay of both meds, if not they would resume the meds.

The bloodwork was scheduled to be done at the end of July, a week short of three months since he got the two meds mentioned above. Fortunately enough, I did get any other bloodwork needed from other docs grouped with this bloodwork so he wouldn't have to be stuck more than once in such a short time as Caleb does not have any good veins left due to how many times he was accessed during his lengthy hospital stay and how damaged his veins are to the harsh antibiotics, meds, and IVs/central lines he had. This bloodwork usually takes around a month to yield any results. However, sometimes it comes back in as little as two weeks.

So before we left for the beach I did send them an email asking them if anything was back yet as even though we would thoroughly clean the beachhouse and stay there and limit outings, it is still a chance of exposure. So I just wanted to see if they had anything back yet. They indicated that they should have something within the next week or two. Well time passed and I heard nothing. This past week I was getting very anxious and sent them an email asking them if anything was back and I was told they would be coming back into town and would get back to me. Then yesterday morning I get a call from a new fellow that works for the Allergy and Immunology department with Children's Hospital in Pittsburgh. I was not able to get to the phone so she left a voice mail indicating that Duke wanted an IgG level drawn. So that was how I found out that the IgG level wasn't tested int he last batch of bloodwork, I was very upset. Then what made it even worse was as the voice mail went on the fellow said that when Duke asked for the bloodwork she said to them that we could 'just wait on drawing that level until Duke needed more bloodwork' . I was livid! Who is she to make the call on when the IgG level should be drawn. Does she know that Caleb has lived in a bubble for over THREE YEARS and this level could give him some freedom?!?! Did she not think it would be wise to call me and see what I think!?!? Are you kidding me?!? I then tried to call her back and got the wonderful automated message. So I then sent Duke an email indicating that I did not agree with Children's fellow regarding waiting on pulling an IgG level as Caleb has now been without these vital meds for over three months now. If he does need them he could be in great danger as flu season is approaching and the H1N1 virus is another extreme added concern for him. We now are waiting to see when Duke will be ready for his blood. Then we will have to wait atleast a month for the results, then we will be right into flu season, and if he needs those vital meds....one is an IV therapy and I have to get the new script, pump, etc and that cannot be done overnight.

So I hope, as you read this, you can understand why I am so upset. We are getting very close to flu season and Caleb has not had these meds in over three months and is virtually unprotected if he needs them and is not maintaining his IgG levels high enough. Also, I was hoping if we got these levels back it was going to yield some good news and we could get him out to do some fun stuff before summer ends. We know that this winter would be scary either way due his immune issues. But there are a couple weeks of summer left and it would of been nice to know if we could have been able to do some fun activities with him.

I just am having a rough time with this...

God Bless you all!!

God Bless Caleb!!

**Immune Bloodwork Update**

So......

They didn't check the IgG level with his last set of labs....I am bummed. Really bummed. Now we wait for another blood draw to be scheduled and pray he has a vein to draw from, wait a month for results, and pray. It is even more scary as flu season is approaching and he has been without any IVIG, pseudo-immune infusion, for over three months and the other strand of flu, H1N1 could pose a great danger to him.

I am very bummed....

God Bless you all!!

God Bless Caleb!!

Surgery Scheduled

Hello all, well first an update on the cold. He seems to be coughing less and the congestion isn't as bad. So we are praying that he continues to fight it!

We still have not heard from Duke regarding his Immune bloodwork! UGH

Also, as far as the wish with Make-A-Wish to tear down the house next door. They say they can't buy property. So now on to trying to decide on another wish. I did ask them what about remodeling our basement to make it a play area for Caleb. I did explain to them that the foundation would need repaired as it was slightly damaged from the flood a couple years back and can get wet and therefore, it would need to be sealed better before making it a safe play area for a immune-compromised kiddo. She said they don't do construction....OI VEY I want to pick something that he can appreciate over time, and not something that only lasts for a day or a week, but I am really struggling with another idea!

Surgery: Well Caleb is scheduled for surgery on the 15th of September to get tubes in his ears, as cleft lip and palate kiddos generally will have tubes for the rest of their lives, and his last set are out. He also needs circumcised. If all goes well they are telling us that he could go home the same day. Now we know in the past that Caleb has had issues letting them extabate, pull the breathing tube out that they put in during surgery. So we are hoping his lungs behave and that he will let them extabate and he can go home on the same day! This would be a whole new world for us....going home after a surgery. WOW!

Once Caleb recovers from this surgery, we will schedule a hearing test. All past hearing tests have been done under anesthesia by a brain stem activation. It has been explained to us that brain stem activation and a normal hearing tests can show different results. So we are praying that the results will show that Caleb's hearing is a little better than what the brain stem activation tests show. We shall see!

Special Prayer: My mom is going in for surgery on the 1st please keep her in your prayers!

God Bless you all!!

God Bless Caleb!!

Immune System, Meds, or Both?

Well, this morning was the first morning since Caleb got his cold that he didn't wake up choking on phlegm. So, could he possibly be kicking this cold? If so, is it the meds, or maybe his immune system is working, or a combo of the both? I am hoping the later. We still haven't heard from Duke regarding his blood work, but if he continues to improve, I am encouraged to think that there has to be something, even something little, in regards to his immune function. It would be great to know that there is something there especially as we will be heading into another flu season in a couple months. That is the scariest time for us as the flu can pose such a great risk to the healthiest of people, so we are really praying that we will soon hear some good news regarding his immune function.

Also a couple special prayer requests. Please pray for my sister-in-laws family, Stacy Byrum, as this past week her Uncle passed away. God Bless him. Also, a little friend of ours, who I have mentioned on here before, is fighting yet another infection. This little one, Moriah http://www.momentswithmoriah.blogspot.com/, is undergoing tests to see if she has the same immune deficiency as Caleb. Please keep her and her family in your prayers also.

God Bless you all!!

God Bless Caleb!!

Cold Go Away and Feeds

Well, the cold is still here. I have it also, and Bri woke up this morning not feeling the best and I am scared he is gonna come down with it too. So this is one persistent bug going around in our house. YUCK. Caleb is dealing better with his breathing treatments he gets every four hours. Kind've ironic, he used to get a treatment every four hours in the hospital when he was in there for over a year and half straight and even for awhile after he initially came home, and they didn't bother him at all. When we started the treatments for the cold, he was very mad. So it is a good thing, that he is mad and that these treatments are not second-nature to him anymore like they used to be.

As far as feeds...I am happy to report that Caleb is willing to eat more by mouth. However, he is not taking enough to maintain his weight so we are still supplementing via his feeding tube. He still does not know how to chew so we are working with that along with his SEVERE aversion still to drinking. If we were able to get him over his aversion to eat then I am keeping the faith that I can get him to drink. This is hard though as I have read through research that kids with these aversions, especially since he never has taken any liquid by mouth, that they feel like they are drowning when taking a drink. So this is going to be a battle but we can do it! It just might take time.

I still haven't heard anything from Duke regarding Caleb's IgG levels and if he maintained them on his own. It will be a month on the 22nd since the blood draw so we are really hoping we hear something soon. It is crazy that next month will be two years since Caleb's transplant! Wow what a journey....Brian and I were reminiscing the other night on the deck about the journey we have been through the past three years and all I can say is WOW. We have been through a lot. I guess when you are going through it you take it one day at a time and don't realize how much you are going through, the whirlwind of emotions: you feel so tired, scared, defeated, happy, sad, etc. I can't believe what we all have been through as a family. I am blessed to have such an amazing little boy with such determination and fight and an such an amazing, supporting, and loving husband. I love you both so very much, my boys!

Also, for those who haven't seen them yet there are pictures of our beach vacation a couple posts down the page!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Cold Update

Well we were right. Caleb did catch a cold somewhow while we were at the beach. I took him to the doctor yesterday morning, so nice to see our local pediatrician again, she is so awesome! And she said Caleb did get a head cold that then settled into his ears and lungs, yielding a double ear infection and bronchitis. Hence, Caleb is on two anitibiotics and a prett pricey nebulizer (breathing treatment-$400 for the course of nebs) Thank goodness Dr. A had some samples to give us for the nebulizer. It was so neat to be able to take my kiddo to the doc and to bring him back home. I have never experienced that before. We will watch him closely and see if he can clear some of the junkiness by Monday. If not we will go back to the doctor and see what the next step is.

As far as the immune bloodwork, we still haven't hear anything.

I also want to appologize for not updating regularly. We just we planning for the beach and were very busy! I will get back on the schedule of updating more often.


God Bless you all!!

God Bless Caleb!!

Beach Vacation

Yep you read that right, we went to the beach! I didn't want to post about the upcoming trip as I was afraid I would jinx it and we wouldn't get to go, but WE DID! Wonderful friends of ours so gracioiusly let us stay in their beach house in Georgetown, SC. Brian, Caleb, and went along with my parents and my brothers and their families. We had so much fun. Caleb got used to the water and by the end of the week if you held him by his tummy he would doggy paddle. He had one bad day at the beach due to sand in his eye. Other than that, it was absoloutely terrific and none of us could have asked for anymore. It was amazing. Thank you friends for allowing us to stay at your house, we will be forever grateful for your generosity towards our family!


Another first: we took Caleb to a restaurant for Bri's birthday, we were fortunate enough to get a corner table with noone around us and it was great. We were out in the public with our son and he ate babyfood for dinner while we were there. It was awesome. I think that was probably the best birthday gift Bri could have ever gotten.

Caleb unfortunately did develop a cold while we were there and we are heading to the doctor early in the morning as it is still not getting any better. Hopefully, we will hear something from Duke soon in regards to his recent bloodwork that will allow us to rest a little more easily.

Here are some pictures of our trip to the beach and more will come as my brothers send me the pictures they took! I have a lot of more updates but wanted to post the pictures as I know you all would appreciate them!

Photo and video editing at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Another year....Our baby is Three

A little over three years ago Brian and I found out there were health concerns noticed on ultrasound with our baby boy. Our pregnancy was followed closely and we were blessed with a little baby boy on July 12th 2006. He battled for his life for over a year and a half straight in two hospitals. We were able to finally bring Caleb home a little over a year ago. It is amazing to say that last week we celebrated his third birthday. Yes our strong baby boy is now three. Three amazing years....long nights, unbelievable battles, and many lessons learned. Thank you Caleb for teaching me so much! This little boy has such an amazing will and has taught us and so many other so much. Thank you Caleb! Momma and Dadda love you so much! We are so proud of you! Happy Birthday little man!

The video montage below is the beginning of what we hope will be a lot more firsts, hence the delay between posts we have been busy and loving it!

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Hug your loved ones often and tell them you love them. Take nothing for granted and enjoy all of the little things!

God Bless you all!!

God Bless Caleb!!

Fun Times & New Items

Kenny Chesney Weekend
Wow! So we had a taste of 'normalcy' and loved it! We lucked out and got an early check in for the hotel for the Kenny Chesney concert. I actually found out the night before that we were granted an early check in so I told everyone we were leaving early 9 a.m. sharp and thank goodness because the traffic, as we could see from our hotel window, got REALLY bad about a half hour after we checked in. So it went well, we covered Caleb up and got him up to the room, I then sprayed the room down with Lysol and all our bags that had just been lugged through the hotel. Then we all relaxed and settled into the room. Who knew a hotel room could be so exciting. It was awesome. We had an AWESOME view of the point so that was great for Caleb that he could see stuff from the hotel window.
My Mom and Dad were great. They were great at wiping stuff down, they are just as used to it as Brian and I. Dad took Caleb for two walks down to the point too while we were at the concert so Caleb could see the boats and celebrations down by the Point. Dad was great he took antibac and didn't let people get close to Caleb. Thanks Mom and Dad. So Bri and I were off to tailgate to see some friends we haven't seen in years! We love you guys! We missed you so much! We finally got there and it was so much fun! After tailgating it was time to go in! OH MY GOSH! It was awesome!
We had soooooooo much fun. The lineup was amazing! The concert went so fast! Already excited for next year!
On the way home we decided to stop at a Sonic, since we don't have one around here, and eat lunch. This is also another big step as we took Caleb out of the car and sat at a table. We sat at a table were there was noone else around and wiped it down so we weren't 'contaminated' and then we ordered lunch. Another amazing time, yes eating lunch can be amazing. The reason why it was so awesome was, after we were done eating Brian and I ordered sundaes. We both hoped that maybe if I offered Caleb some ice cream, maybe he would take some and sure enough he did. He ate half the sundae, no joke! Yes, I got choked up, but who wouldn't right?!? So great! Great ending to an awesome weekend!

Immune System
The other day we got a phone call from Dr. Markert's head nurse, Stephanie. She wanted to let us know that some of the 'protocol' has changed. Just to remind everyone, the transplant Caleb got is still experimental, so the 'protocol' (criteria that is stipulated in the study to be handed over to the FDA periodically until the transplant is accepted as an approved non-experimental procedure) can change based upon new research. The bone marrow unit, which is a unit that conducts a lot of research on immunosuppression, just came out with some new findings. To make a long story short, based upon some of their new findings, they have changed some of their protocol. Once some of Dr. Markert's kiddos reach certain levels post-transplant, the bone marrow unit indicated that some meds should be temporarily discontinued to see how the immune system does on its own. These meds are bactram (the med that is taken to prevent silent pneumonia) and Immunoglobulins (the infusion that I give Caleb weekly for his 'fake' immune system that maintains his IgG levels). Then two months after these meds are temprarily discontinued blood levels will be drawn to see if these kids can't maintain their IgG levels (their immune levels that can fight bugs). If the IgG levels don't stay up, the Immunoglobulin and Bactram will be restarted. Well...Caleb was one of those kiddos that was picked to stop the meds, based upon some of his immune levels in relation with the new research. So...yes I am nervous, but I am anxious to see what his levels show in two months. Hopefully his immune system can maintain its levels without the help of the Immunoglobulin infusion that I gave him weekly. During my conversation with Dr. Markert's nurse, I did ask if his last labs came back and she said they did, Caleb's immune system yielded a 15 fold response. The one before that was 13 fold, so we are a little better. Their protocol would like each child to yield a 20 fold response, but once again, this is 'protocol' and Dr. Markert admitted that this level may be decreased to as she is not sure if 20 is too high of an expectation for every child to hit. I think she will get a better idea of what is a good response number when she sees how these kiddos that she has picked to temporarily discontinue these meds due without the meds for two months and where their response was at that time. While I also talked to Dr. Markerts nurse, Stephanie, I asked her if we could take Caleb certain places, and she said yes...just not places where there are a lot of people and where people would be hugging and kissing him. She indicated his baptism and church should wait, which is tough as we miss our church family! One more step towards normalcy?!?! We'll see...We are praying that Caleb's immune system can maintain its own levels over the next two months. This is a HUGE test! Hopefully his immune system passes!

Back to Dr. Archbald
So we are back to seeing Dr. Archbald. It was soooooo nice to see her and all the nurses! We got caught up on everything and she got to see Caleb for the first time, since he was about four months old when she wondered if he had an immune issue. She told us back then that he needed to go to Children's to be tested and she was right! So we finally got to see her again and it was sooooo nice! She noticed that his ears are pretty full of wax so she wants him to go to see ENT to get the cleaned and that after that she wants him to get a hearing test done as she is not convinced, like Brian and I, that he is as deaf as what we were told. The previous two hearing tests were done under anesthesia and by brain stem activiation. This would be the first 'real' hearing test. Also, while we go see ENT we are going to try to see Orthopedics (to get his hips checked) and Urology both of these specialties haven't seen them in awhile and she and Brian and I want to get a check-up and then hopefully, just maybe, not have to see some of these specialties in a very long time. We also made a group decision to take one more of Caleb's boluses away during the day to see if that will make him more hungry, so we can try to get him to eat more by mouth. It was so nice to talk about other normal things, potty training, time-out, etc., with Dr. Archbald. We all laughed as Brian and I know about IV's and a lot of extreme medical stuff, but some of the typical stuff we didn't know and we got to ask Dr. Archbald. It was so great to see her and know now that if need be we can call her and go see her than rather having to go to Pittsburgh every time. We missed you Dr. Archbald.

Well that is it for now as far as updates. I do have more, but this post is long enough. So check back soon!

God Bless you all!!

God Bless Caleb!!

Kenny Chesney and a Hotel Stay

For years Brian and I have gone to see Kenny Chesney when he comes to Pittsburgh. Of course, when Caleb was sick and in the hospital we didn't go, but we are planning on going this year. It is an all day concert on Saturday and Brian and I are going to try to go see as much as we can. Needless to say, it is not like we can leave Caleb at home in Wheeling, an hour away, with a babysitter as there is a lot to take care of and we would feel safer if he was closer to us while we were at the concert. So we asked Caleb's transplant/immunology doctor, Dr. Markert, if she thought it would be safe for him to stay in a hotel, so he could be near to us while we are at the concert. She said it would be fine for him to stay in a hotel. So we are very excited! We were originally thinking about going Friday and Saturday, but with the limited vacancies and the expense of the available hotels, we decided to go up early Saturday morning and pray we can get an early check-in. Of course, I will go into the room before he goes in and spray it down with Lysol so it is 'clean' and then we will take our disinfecting wipes to wipe stuff down. Hopefully, the hotel will allow us to do an early check in so I can get the room 'cleaned' and him and my parents settled before going to the concert. My mom and dad are going to babysit while we are at the concert. I have to admit that I am a bit nervous as this is the first time he is staying somewhere other than in our home. But, I will feel more at ease knowing he is closer in case of any emergencies. We will try to stay 'clean' from the point we leave home until we check in and then Brian and I will shower when we come back to the hotel from the concert to disinfect ourselves, just like we do when we leave the house. As always, we will keep Caleb protected in transit via his rain cover bubble we put over his stroller. He doesn't cooperate with the wearing of a mask, so the rain cover works well also. This will definitely be a whole new experience, and probably nerve-wracking, until we get him settled and in the room. But maybe this can be one smaller step towards normal.
So right now I am in the middle of packing. I already have one suitcase for medical supplies only...wow!
I will let you all know how the experience goes ...

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Pool, Friends, and Family

Hello all!

So a couple updates.

Caleb is amazing...have I said that before?!?! HA HA He is such a tough little guy.

First updates on some therapy:
So I am able to get Caleb to eat almost a half a jar at least once a day. It is not easy though. He is very timid when I bring the spoon to his mouth for the first couple bites. Then finally he seems to get into a rhythm and wants to eat! So I hope that that continues!

Walking: well I decided the other day to take Caleb outside to see if that would help in anyway with his distaste for his walking therapy. I put him on the sidewalk and held his hands and low and behold he started walking and far. He walked down to the end of our street and back and not just once a couple times. I was amazed. One of the cutest moment of the walk is when our friends who love Caleb just as much as we do drove by they would all say 'Good job Caleb' or 'You can do it!" So sweet! It is so wonderful to continually be surrounded by such wonderful people and friends.

Pool
Well Caleb had his first dip in the pool the other day and he loved it. The first day we tried it didn't go so well and he did not want to get it. So I tried the next day and he loved it. He also loves his daddy's hat more than his. So, I think we are going to have to get Brian a new hat!


Friends
Brian and I had the chance to go out last week and be surrounded by some more sweet and wonderful friends of ours. We all went to a local restaurant to have dinner, drinks, play pool, and watch the Penguins. We had so much fun! Thank guys it was so great to see you again. Hopefully, it won't be such a long span in between visits next time.
Family
So Brian and I have decided that we are going to start trying to do some 'normal' things, leaving the house when safe and doing things with Caleb, without putting Caleb at risk. So we tried a picnic! I took Caleb to my Mom and Dad's house on Memorial Day (Unfortunately Brian had to work so he couldn't go) so he could finally be around all his cousins and Aunts and Uncles. Caleb has not seen any of them since he was first born. So this was an awesome day for us! Truly amazing. It was so cute to see how Caleb watched his cousins Hunter, Casey, and Sam play with one another. They were so great too at maintaining a safe distance from Caleb! Thanks guys! AHHH to be with my whole family....my parents, my grandma, my brothers and their wives, and my niece and nephews....wow words can't describe. I love you all so very much and have missed being a 'part' of the family. I am so glad that we did it and thank you all for being so great regarding Caleb's safety. Next time, I will try to relax more! I cannot wait for the day when I get pictures of you all holding Caleb and being right next to him.

Photo and video editing at www.OneTrueMedia.com

Come on bloodwork show good results so we can do more 'normal' things!

Thank you all for checking in on us!!

God Bless you all!!

God Bless Caleb!!

Come on Immune System....WORK PLEASE

Okay well today the fourth set of blood work was taken to test Caleb's immune system.

This round of bloodwork was taken in a little different manner than in the past. In the past, Caleb had a central line (a IV line that is more permanent than the general IV you would get for a short admission in the hospital) and I would draw the blood and then my dad would drive to Children's Hospital in Pittsburgh where it then would be shipped off to Duke. Well, as you all remember Caleb's central line was removed awhile ago so we had to make plans this time for Caleb to get his blood drawn and to make it even more 'new' for us we were going to try to get it drawn at our local hospital where they are not familiar with our little 'bubble boy' Caleb. This was very nerve-wracking for me for many reasons this morning. One, I know Caleb has pretty much no veins left for them to draw from as all his veins have been damaged from all the IV's and sticks he has endured through his lengthy hospital stays and two, that this hospital is not familiar with our immuno-suppressed little man and I am not sure how they were going to be regarding the isolation precautions and accommodating to our special situation. I am happy to report that both my apprehensions were put at ease. From the point of registration to the time we left, the personnel were fantastic and accommodating to our needs. Of course, we were starred at by other patrons because Caleb is kept under a rain cover in his stroller to protect him. He doesn't tolerate wearing a mask anymore, he actually rips it off. But once again, the staff was superb. My dad went with me, as Brian had to work, and he was the 'dirty/contaminated' person, so he handled all the paperwork and signing of papers so I can hold Caleb and tend to his needs. After we registered, Dad went and asked if we could wait outside until they were ready to take Caleb's blood. They were fantastic, they came and got us and took us directly back into a room when they were ready. The techs were amazing. They got blood from Caleb on the first stick and wore all the proper gear (masks, gowns, and gloves). If anyone reads this who knows anyone at Wheeling Hospital, please spread the word on how much I appreciate how fantastic they were to Caleb and accommodating to his situation.
So my dad is on his way to Children's Hospital in Pittsburgh to drop of the blood were it will then be packaged and shipped to Duke. Thanks Dad for all your help today, you were a HUGE help. I love you!
We are praying really really really hard that the bloodwork shows his T-cells are functioning and his immune system is functioning at a level at which maybe we could do some 'normal' activities with Caleb and have some confidence in his ability to fight off bugs and viruses! Now the waiting game begins....one long month of waiting...come on immune system please work!

God Bless you all!!

God Bless Caleb!!

Growing Lil' Boy

Well the title of this post says it all! Our little boy is growing up. So many updates:

Well where do I start...

Clinic Appointments:
Caleb finally got to see some of his doctors at Children's Hospital in Pittsburgh for much needed clinic appointments. Once again, we try to wait until the end of cold and flu season to hopefully limit the possibility of exposing him to nasty bugs. Yes, bugs and viruses will always be around, but if we can take him when the threat is a little less that is better for him. We got to see the new Children's Hospital. When we were driving into the parking garage, Brian and I gave Caleb a little speech and told him we didn't want any overnight stays at this hospital, just clinic appointments. The hospital is gorgeous. I am just really hoping we never see an inpatient room, we have seen enough hospital rooms.

So the first doctor we saw was Dr. Frangiskakis, pictured at right with Caleb. This is Caleb's acting Pediatrician. She has watched over Caleb from his first admission to CHP until now. She was so happy to see him. She said he didn't look like a baby anymore, that he looks like a little boy. We went through his development with her and the big discussion was his feeding orally or the lack thereof. She, Brian, and myself agreed that if Caleb does not improve with his feeding by the next time the immune tests come back, with hopefully good results, that we are going to do an in patient feeding clinic with him. The rest of the appointment went well. We noticed an ear infection which he was put on drops for. The unfortunate news is that Dr. Frangiskakis is leaving CHP to go back to her home state. We will miss her so much, she was so wonderful to Caleb and our family. We stayed with Dr. Frangiskakis as his PCP as she was acting as his 'quarterback doctor' - she kept all his specialist docs in Pittsburgh involved and updated as well as communicated with Duke. However, there is no time like the present to get Caleb back to his primary PCP here in Wheeling. We are ecstatic as this is such a big milestone for Caleb.

The next following week we saw was the Cardiologist. They haven't seen Caleb since before he went to Duke. The original plan that the CHP Cardiologists would do his open-heart surgery to fix his ASD's and his Triatrium when we got home from Duke. But that plan changed, as you all know, when Caleb went into heart failure when he was very sick at Duke. So, Brian and I were expecting a very long appointment. Brian and I were both very nervous about this appointment as Caleb has been having some lower heart rates. Surprisingly, they did an EKG and listened to him and they said that based upon what they heard they did not believe the risk of doing an ECHO, because of his immunosuppression and what he may be exposed to, was needed because they said he sounded great. The doctor indicated the lower heart rate is what a 'normal' heart should do. Yes his may be lower than others, but as long as he is perfusing well (blood is circulating well into his extremities) and he is not changing colors or passing out then it is all good. Then the bigger news, we don't have to see Cardiology for a YEAR! We were in shock. Really....we were expecting to be handed slips of this test and that test and to come back in two weeks. But nope, we don't have to see them for a year. Way to go Caleb!

So since we had some extra time, we thought we would stop by and see our friends at Cleft-Craniofacial to say hello! They were always so great to all of us. We were shocked when they said to go ahead and bring Caleb in and they would just go ahead and see him to (he was scheduled for a clinic appointment for the end of June). They are so great, they know how far away we live so they slid him into their schedule to see him for his repair check-up. His plastic surgeon, Dr. Losee, said Caleb's scar looks great. We asked him about a white spot on Caleb's gum-line. Dr. Losee indicated that is the scar from the palate repair and not to worry. He said the repair looked good and by what Caleb is trying to verbalize now he believes the palate repair will work well in regards to speech! WOOHOO What a day!

Feeding Update: I realized the other day that the current approach to feeding wasn't working. So I tried another approach and I am so very happy to report that I am able to get Caleb to eat about a half a jar of feed about twice a day. Never thought that day would happen. The bigger shocker was one night when I was feeding him at dinner, he looked thirsty, so I handed him a sippy cup, and he DRANK FROM IT! Brian and I were ecstatic to say the least. I hope that Caleb continues to feed well. The first bite always seems to be the toughest, but then he does better with every bite after that.

Girls Day:
I finally, after three long years, got to spend some quality time with my two great friends Jen Straub (white shirt) and Jess Tuschong (white and brown shirt). Most of you are familiar with these two blessings also. As Jen sends out email updates on Caleb and has updated this blog for me when I couldn't. Jess, created the page about Caleb on Facebook which kept hundreds of people updated also. These two girls have been awesome to Brian, Caleb, and myself throughout the years. They have done so much for us and they continue to do so. I was pampered by the two of them by a manicure and pedicure and lunch! It was so nice to see them. When we were hugging to say goodbye I didn't want to let them go. I love you both so very much thank you for a wonderful day! I had such a great time.

The following week, I was pampered by another friend, Alana, and got my hair done. Thanks Alana it looks great!

I love you girls! Thanks for the pampering it was so nice! Love you!


Zoo:
Okay so are you ready for the biggest update?!? Brian and I last week had enough of being shut-in and decided to take Caleb to the Oglebay Zoo. We were hoping that there wouldn't be many kids there as it was still pretty early in the summer and we lucked out. There was noone there. We were able to take the cover off the stroller, that we usually use to keep him in a 'bubble'. It was so much fun. When we walked out into the zoo. I almost broke down. But I held it together. We had the zoo to ourselves and it was probably the best time we have had in years. A highlight of the visit was we stopped at the concession stand to get a drink (which is a big step too because even this is a germ exposure possibility, but we wiped everything down) and the lady that was working the concession stand asked how old Caleb was and we told her almost three then she said 'what a healthy looking three year old'. She had no idea what those words meant, wow our child looked healthy! The only part of the zoo, we really couldn't do was the train ride, as there is no way to make that a 'clean/contamination free' experience. But we had a blast. We wanna go back, but we know that we lucked out that it was not that crowded. It would be nice if we could do more things like that for him. What a day! So much fun! We didn't want to come back home!

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Thanks for checking in on us, sorry for the delay in posts, as you can see we have been very busy!
God Bless you all!!

God Bless Caleb!!

Meetings, Meetings, Meetings

Well we have had a lot of meetings lately.

Thursday I had a conference call early in the morning with Birth To Three and Ohio County Schools discussing the transition from Birth to Three into the Ohio County School System. They have agreed to provide a home bound teacher for whatever services that they deem necessary when they come in to do his testing in June.

The next meeting was for a psych evaluation, as it is needed for us to apply for federal assistance called Waiver for Caleb. Waiver, is a very hard system to get into. Just like any other assistance for special needs kiddos, the paper work is ridiculous and has to come from many different people. There is usually a waiting list and specific criteria that have to be met. The psychologist came to the home on Thursday, and in her opinion, she believes Caleb should qualify for Waiver. Now we will just have to wait to see if the State agrees.

Last and definitely not least was our meeting with Make-A-Wish Foundation. The lady that came to the home was so nice. So we went for it, we asked for the foreclosed house next door to be torn down so we can have a yard for him, get him outside so he is not in the house all the time, and put different 'therapy stations' in our yard over time for him. She really wasn't sure if they would go for this and asked us if we had a second wish, just in case. We couldn't think of one....it is so hard to pick a wish for a child that can't leave the home. So she said she was going to ask the 'higher ups' and get back to us! So we will see! I will keep you all updated.

Thanks for checking in on us!!

God Bless you all!!

God Bless Caleb!!

All I can say is 'Wow'

Well I was speechless the other day and once again was amazed and so proud of my little boy.

I was eating some popcorn and as always, I let Caleb touch the food I am eating if he wants. So he did. Then what happened next was amazing. So when I was eating my popcorn, Caleb stuck his hands in the bowl and grabbed some. That alone was a feat in itself as it is a very weird texture and the fact that he was even touching it was great. He then held a piece in his hand, crawled to Saba, and threw it to her. But wait it gets better. He did the same thing a couple times, and then....he looked at me, as by this time I was standing up with the bowl in hand, said 'aba (which is Saba our wonderful dog), then signed 'eat' (assisted with the verbal noise of eating) and then signed 'more'. I wondered if he was trying to let me know he wanted to give Saba more to eat. So, I leaned down and sure enough he put his hand in the bowl and then went over and fed her! I couldn't believe it! My baby just signed a sentence to me telling me what he wanted! So awesome!

Way to go my lil' man. We are so proud of you. You are amazing!

Thank you all for checking in on us again and for enjoying moments like these with us!

God Bless you all!!

God Bless Caleb!!

Meetings, Walker, and a New Trick

Meetings
Our meeting with Birth To Three: we set new goals and discussed the need for an educator to start coming in from Ohio County Schools when Caleb is of pre-school age and transitions out of Birth To Three. First the goals were reviewed as this is a main part of Birth to Three. The therapists set goals with the parents of what you hope can be covered over a certain amount of time. Ours didn't change much, but there were slight improvements. We did make some strides since our last set of goals. He now tolerates a plate of food in his area and he is now crawling! So those milestones may seem small but they are big strides for him. Some of our new goals were: 1. to get Caleb to willingly accept food and drink in his mouth. 2. to be able to communicate better-continue to build his verbal and nonverbal communication skills 3. to try to get Caleb to go up and down steps 4. to try to get Caleb to walk, using whatever equipment (i.e. a walker) that is necessary. The goals are there fore the parents to, if needed, ask the therapists what they suggest to do to try to achieve those goals. So I pray that we can do what we can to get him to start achieve if not achieve those goals.
Our meeting with Make a Wish Foundation: Unfortunately, this meeting had to be re-scheduled. We were really bummed! The representative called about an hour before the meeting and said she had to re-schedule. So we are now on for the 23rd. I did research the possibility of a sensory room for Caleb. It does seem like a great idea for kiddos with sensory issues. But I think, and Caleb's therapist also agree, that this would be way to much for Caleb and scary for him as his sensory issues are pretty bad. So I think we are going to, thanks to a lot of our friends encouraging us to try, ask to see if they would be willing to tear down the foreclosed house next door. We do not have much of a yard and since Caleb is not able to leave the home due to his isolation precautions, we though the yard would be the best thing for him. He could get outside and do different activities. Our goal would be to put sensory 'stations' in our yard. I would also like to see if we could get the yard fenced in as we live on a very busy street and Caleb is deaf in one ear and has significant hearing loss in the other ear. So for safety reasons, that would be awesome. I am not sure if they will go for this or not, but it is so worth a shot. This would be awesome for him if we could get him out of this house when the weather is warmer and get him to play, but be doing therapy at the same time. We will see! I am really really praying they grant that as his wish!
Walker
Caleb's PT was able to come yesterday and he modified Caleb's walker. Caleb seemed to be a little more accepting of the modifications and not so scared of it from a sensory perspective. But as we have seen before, he can become scared very quickly. So I am trying to think of ways to decorate the walker to make it less 'scary' from a sensory perspective for him. I hope to updating soon that he is using it and loving it. Fingers crossed! We still also aren't sure if this is the best walker for Caleb! There are many walkers, so we are going to try this one a little longer and if it doesn't work, we will try a different one.
New Trick:
We put Caleb on the stairs yesterday to see what he would do. Well, for those of you who saw the post regarding the big boy bed, one of his MANY sensory issues effected his 'touching' the bed. Same happened with the stairs. We placed him on the steps to see if he would crawl up the steps. He could not stand his belly touching the stairs. He flipped! He shut his eyes and cried. So we turned him around and let him sit on the step. Then we helped him go into a standing position a few times from the sitting position as we are trying to teach Caleb how to squat also and this exercise will build those muscles. He did great, he required little help to get to the standing position. Then later on that day, I was so excited, I took him back to the steps to see if he would do it again and he did. Then....he was getting so excited about it...he did it on his own! It was awesome!

Thank you all for checking in on us again!!

God Bless you all!!

God Bless Caleb!!

Easter

Here are some Easter pics. We had a very nice day!

The Easter Bunny even stopped by our house a couple days early so Caleb could see him through the window! Caleb didn't really know what to make of it as he really has never seen anything like that before as we haven't ever been able to take him to get pictures taken with Santa or the Easter bunny, so needless to say for a child that is a shut-in and in isolation precautions it was definitely something new, but so so neat for him to see and experience.

The piece of paper with eggs colored on it was going to be how I thought we could try to communicate with Caleb on the fact that he has to hunt for Easter Eggs. But he decided to get up really early Easter morning and when it was time to hunt for eggs he wasn't in a good mood at all so we decided to forgo the Egg Hunt. Maybe next year...

He got a lot of wonderful gifts from the Easter Bunny and his grandparents...cars, trucks, paints, books, DVDs, etc. He also got some candy, which I hope he tries to eat just a little bit of it...We will see!

We are also anxiously awaiting our busy day tomorrow. Tomorrow we meet with Birth to Three to discuss his transitioning out of their program and we will see what he will need as far as care to continue his therapy. Also, we have our meeting with Make a Wish...and we still don't have a wish! Yikes!

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I will post as soon as I can to update everyone on the meetings!

God Bless you all!!

God Bless Caleb!!

Make a Wish!!

Great News! I just get off the phone with the Make a Wish Foundation and they are going to grant Caleb a wish. This is so exciting. We had thought about doing this while Caleb was at Duke for his transplant, but honestly, he was so sick and fighting for his life that it wasn't the best time. We finally filled out the beginning paperwork a couple weeks ago and I got a call this morning letting us know that he has been approved and can MAKE A WISH! We are so thrilled. If anybody deserves it this little boy does! We still aren't sure what his wish will be as Caleb can't verbalize a wish, so that it a lot of pressure on Brian and I that we pick the right wish. Our meeting with Make A Wish is next Tuesday, so I will keep you all updated on the progress and if we come up with a wish....

God Bless you all!!

God Bless Caleb!!

Signing, Hearing, and Transition

Well Caleb continues to pick up more signs! I introduced 'where' to Caleb and he picked it up within 10 minutes. Which is so much fun, because I can now sign and ask him questions....and he understands, as long as you keep the questions very short. For example, we sign 'where's duck?' or 'where's dog?' and he finds them. He also continues to recognize an actual letter, from his letter toys during bathtime, while he's in the tub and associates those letters with certain things. For example lastnight he found an 'L' and growled like a lion. I also have a habit if there are two of the same letter I would place one above the other on the side of the tub. I caught him lastnight doing that exact thing! So amazing!
We have noticed that the words in which he does verbalize, the first letter of each word is missing. I asked his speech therapist about this yesterday and she indicated that this is very common among children with hearing impairments. So we are really trying to over-enunciate the first letter/sound of every word to help him hear it. I am also trying to get him to pay more attention to my lips, so maybe he can get better at lip-reading.
Caleb is also almost three which means he will soon be transitioning out of the Birth To Three program, which is all his therapy, and will enter into coverage/services provided by the Ohio County Schools. We are scheduling a conference call with Ohio County Schools to see what we need to get done to get him those services.
So lots going on. I am also planning to schedule his plethora of needed clinic visits. Soooo many docs he needs to see, should be about 2-3 days of clinic visits. I am hoping to get them all planned after cold/flue season is over.
Well, I have to go feed lil' man!

God Bless you all!!

God Bless Caleb!!

Continuing to Sign and a Date Night

Caleb continues to amaze me with how quick he is picking up signing. He signed 'dog' the other day, which is probably one of the hardest signs to date. He really loves signing. He will sit on the floor in front of me and sign a whole bunch of different words and wait for me to say what he is signing. It's our new game. I have thought of a couple ideas of some possible things I could make at home to help him start learning even more cognitively-so I will post pictures soon of that once I get them made.

He also is getting a lot better with crawling, seems a lot more coordinated! AND FAST!

I had posted awhile back that I would post the story done on our local news station. Well the cd I got with the story on it consists of numerous files and not just one file, so a friend of ours Crissy Clutter, is working on getting it put into one file. She is very busy right now, so she let me know today that she hopes to have it for us sometime after Easter. Thanks Crissy!

Brian and I were able to go out for the first night in a VERY LONG time the other night. We had sooooo much fun. It was so nice to have a date night. My mom and dad babysat and did great and had so much fun they encouraged us to go out again soon. Brian and I might take them up on that offer and go out for our anniversary this coming Monday. I had a blast Brian, I love you very much!


I also would like to thank everyone for the prayers for my Mom when she was in the hospital. She is home now, her sugar is stabilizing. Thank you all for your prayers!

God Bless you all!!

God Bless Caleb!!

Walker and Signs

So Caleb got his walker on Wednesday. His physical therapist was unable to come, because his daughter is sick. Due to the isolation precautions Caleb is on, Brian's and my parents, the therapists, or nurses cannot visit if they or any of their family members are sick. So I have been just putting the walker in Caleb's area, like we do for other 'new' items to help him adjust. He still doesn't like it, at all! But I am hoping that will change! I have a feeling he would do really great with it, but I have to get him to accept it first. So we will keep on working on it. The pictures that were taken of him with the walker were just before a crying
meltdown.

Caleb has been doing GREAT with his sign language. He has picked up so many signs that I have shown him in the last two days it is amazing. In the last two days he has picked up: lion, dad, again, and elephant. This is really good progress for him as he used to pick up one or two signs maybe every two weeks. We are really hoping he continues to pick up signs this quick. He also seems to be understanding verbal directions a little better. Lastnight, before bedtime, Brian and I were playing with Caleb and asked him to get the ball across the room. When we ask him things like this we verbalize the direction and sign the key words for him in the direction. He crawled across the room and rolled the ball back to us! It was really neat. Of course, we have hit the terrible two's and that along with the breakdown in communication due to the delays can make things difficult. But I try to teach him signs daily that would incorporate into his daily routine to help him communicate what he wants.

I just wanted to give a quick update as I know many of you were aware that he got his walker and I wanted to let everyone know where we were with that.

Thanks again for checking in on Caleb!

God Bless you all!

God Bless Caleb!!

Alligator

Well, Awhile back I posted that Caleb had a new fascination with Alligators and I mentioned that we were looking for alligators for him. Well thanks again to one of our wonderful friends Caleb received a little friend, an alligator, in the mail. Thanks Lara and Family. He absolutely loves it! Of course, like any other toy, it took some warming up to, but he took to it and loves it! We actually use it during our feeding therapy with Caleb and pretend the alligator is eating too!

God Bless you all!!

God Bless Caleb!!

Haircut

So since we cannot take Caleb out of the home, one of my 'hats' I wear is a stylist So needless to say when Caleb gets a haircut we do it here at home. Usually I trim and then Brian blends it with the razor. But Brian has been working A LOT lately so I cut Caleb's hair the other day on my own. I think this is the best one so far, and the quickest. Here are some before and after pics for you all to see!

Also, there is a little girl, Moriah, that needs prayers along with her parents. Please keep this little girl and her family in your prayers! To read more about this sweet little girl and her family please visit, http://www.momentswithmoriah.blogspot.com/.

Thanks for checking in on all of us!!


God Bless you all!!



God Bless Caleb!!

Big Boy Bed

So....This will be Caleb's third night in his big boy bed. The other night he fell asleep in my lap (so love when he does that) After he fell asleep I thought if I could put him in bed asleep, that may be the easiest time for the transition from his crib to his big boy bed.

Well, it was what he needed to help him accept the new bed, comforter, colors, textures, etc. I am hoping his sensory aversions are conquered in regards to the bed. His sensory aversions can go away and re-appeear, as this does happen frequently with his toys. So we are really hoping and praying that his sensory aversions in regards to his bed don't re-appear. Fingers-crossed!

So, today I took apart his crib. It was a mixture of emotions for me when I was taking the crib apart. I was happy that my little boy is sleeping in a big boy bed. But at the same time, my little boy is in a big boy bed and I know that 'baby' stage is over. We didn't get to enjoy all the time that he should have been in a crib here at home, as he was in the hospital for a year and a half. So that reminded me of some of the things he might have missed by being in the hospital for so long. But the joy DEFINITELY out-weighed the harder memories of things he may have missed. I am so proud of my little boy's accomplishments throughout his life and he continues to make me so proud to be his moma. Way to go Caleb!

God Bless you all!!

God Bless Caleb!!

'C' is for Cat

So a little snip it so I can brag about my amazing son.

Yesterday Caleb was in the tub and we were playing with his letters, that we got thanks to our friends at Xerox, that you can stick to the side of the tub. Well he put the letter C up on the side of the tub and said 'meow' and signed 'cat'. I was so shocked and happy. I am reminded of Caleb's delays by the therapists notes on their evaluation sheets when they visit, but it is times like these that you know that yes even though he is delayed he is defenitely very smart and wants to communicate and learn. Way to go Caleb!!

God Bless you all!!

God Bless Caleb!!

Big Boy Bed and a Pediatric Walker?

Well, we thought we would try to set Caleb up with a big boy bed as we found a great deal on a box spring and mattress for his room and couldn't pass it up.

Well we set up the bed, and well as for now it is a 'no go'. We realized that due to his delays Caleb doesn't understand that he could fall out of bed. So we are looking into get another high side rail and putting a rail on both sides and the end of the bed. Thanks Jodi for the bed rail, it works! We just need to get one more and then we will try again and see if it is safe. Another downfall of the big boy bed situation is that we decided to get Caleb's favorite thing, Sponge Bob, as the comforter hoping to make it a 'smoother' transition. Well, he is scared of it. He wont lay down on it or really touch it, as you can see from the video. Not sure if it his sensory issues, regular fear,or a combo of the two so I am trying to get him more comfortable with the comforter too. So for now we have his crib and his big boy bed in his room until we can transition him to his big boy bed permanently.

Caleb's Physical Therapist came Thursday and we discussed the fact that Caleb is still not walking. Let me remind everyone, that Caleb didn't sit up on his own until two days before his second birthday. Brian and I are very aware that there is the possibility that Caleb may have equilibrium issues due to CHARGE, however, we are not convinced that he may not be walking yet due to his delays. Either way, whatever we can do to help Caleb progress in regards to walking is another priority. So we discussed the possibility of a pediatric walker. His PT is going to do some research and will let us know this week when he returns. I don't think the walker is a bad idea as this may give Caleb some independence as he really does not like at all to walk supported (while we hold his hands). So maybe the walker would be a welcoming thing to Caleb.

I also just recently got the video from the news story from Christmas that they did on Caleb. I will be posting that soon, so check back!

Make an on-line slide show at www.OneTrueMedia.com

Again, thank you for checking in on Caleb!!

God Bless you all!!

God Bless Caleb!!

Cake, Bath, Potty OH MY!

So there have been a couple exciting developments.

1. Caleb has been exposed to cake on several different occasions: his first and second birthday and the anniversary of his Thymus transplant. He never touched it. By chance, we put a piece of cake in front of Caleb as we are always try different items to see if he will eat them. Well he didn't quit eat it, but he did touch it, pick it up, and break it up into pieces. This was huge, as this is another texture that he touched and continued to touch! Brian and I laughed so hard and were so excited about his new found interest in Cake. Oh and thanks Pap Ron for giving him such a big piece too-what a clean up! HA HA

2. Bathtime: Caleb continues to love bathtime and his new found discovery is bubbles. Oh how interesting those bubbles are! You will see in the montage how close he looks at the bubbles! So cute!

3. POTTY!: The other day at the end of Caleb's bath he wouldn't let me get him out of the tub he sat there for awhile and looked down at his p-bug. Then he started peeing in the tub. When he was done peeing he was then ready for me to get him out of the tub. SOOOO I decided it was worth a shot to start potty training him. We do have many obstacles: he still doesn't walk and he, at this time, can't communicate that he needs to use the potty. But, hey, it is worth a shot. So I went and got a potty for him yesterday. I got him the potty that plays music once he 'goes' so that will be his reward. Another obstacle, we can't do 'hoorays' or 'yeahs' as this is too much of a sensory overload for him and will completely avert him to the potty. So today before his bath, as I remember my friend Jenny did this with her daughter Keira, I put him on the potty and I couldn't believe it but after being on it for only a couple minutes, HE PEED! The toilet started to play music, but I am not sure if it is loud enough for him to hear (due to his hearing loss). So I calmly went over and sang to him, as he loves music, as his reward. He knew he did it I could tell in his expression. So I stood him up an showed him what he did and he smiled. So, I then decided that I would try the potty training experience with him. Before bed I put him on the potty one more time and to he peed again in the potty! Such a smart little boy! I know that due to his syndromes that this could be harder for him than most children and he probably will have his good days and bad days, but I know he can do it.

Make an on-line slideshow at www.OneTrueMedia.com

Thanks for checking in on Caleb!! God Bless you all!!

God Bless Caleb!!

That's My Boy!

So Caleb has begun to understand what signing is. He has really started to notice that we are signing to him and that is a pathway for communication for him to 'talk' to us. It is so amazing how he has begun to pick up on a sign so quickly and know what it means. I literally taught him the sign for a couple colors lastnight and he literally within minutes was signing it and trying to verbally say it to me. He is so smart! I know every parent says that...but wow what amazing strength my little boy has. He has also tried to verbally communicate with us too. It is such a great feeling to now to be able to somewhat communicate with him. Wow, what a feeling. He has really started to look at our hands wanting us to sign as well as verbally over-enunciate the words to him. I know, as always, that their will be times at which he may regress and may not want to communicate and do signing or be less verbal but he can do it. He is one smart boy!
Another new thing that Caleb does is when it is feeding time and I am getting ready to hook his feeding tube up to his Mic-key button, he points to his Mic-key button in his belly to show me where to attach his feeding tube and pulls up his shirt for me so I can attach it. How awesome is that?!?
He still does not want to eat by mouth, but we work at it everyday. You can tell that he is interested as he does salivate when food is placed in front of him, but the poor thing is so scared of the concept. He will get it, I know he will! It may not be tomorrow or next week, but he will do it on his own time as Caleb always does!
I have also started to begin the paperwork for Make-A-Wish for Caleb and contacted his doctors to ask them to write letters on his behalf. I was literally brought to tears when Caleb's doctors responded and what they said. We are truly blessed to have some of the finest doctors in our lives. We love you all. So the question is...do we have a wish? ....NO!... It is so hard to make a wish for a lil' one who is not completely verbal and cannot tell you what he wants, but you know if anyone deserves nothing but the best he does. We also have to keep in mind of the immunosuppression issues...so we are thinking. We are open to any suggestions that any of you may have, please feel free to suggest anything by posting a comment.
I am sorry again for the delay in posts...please forgive me! Thanks!

God Bless you all!!

God Bless Caleb!!

Much needed update

Hello all....Sorry for the delay once again in updates. But I wanted to keep the last update up there as long as I could as we all, you all included, have been waiting for a post like that for so long. WOOOHOO

We are still awaiting some clairifications from the doctors on what we can and cannot do with Caleb within the next couple of months and up to the big immune test in January 2010. So when I do get those updates I will let you all know. We do know that Caleb will finally be able to meet a short list of people around March. We are so excited that Caleb will get to meet his Uncle Chad and Aunt Jen, Uncle Ben and Aunt Stacy, and my best friend Jen Straub (Aunt Jen). We haven't gotten the 'okay' on him meeting kiddos yet, so we will continue to watch Jon and Kate plus 8 for Caleb to see other kids and of cours for me to get to watch it too (I love that show) until Caleb can meet his Cousins-Samamtha, Casey, and Hunter. We and so are all of them are so excited that they will get to 'see' Caleb.

On the medical front Caleb continues to have a pretty low heart rate since he was admitted for that nasty line infection back in January. We are not sure why he has this low heart rate. We have monitored it on a monitor here at home. But Dr. Frangiskakis now thinks it would be smart to get an EKG to check to make sure Caleb's heart is okay. We are waiting on the EKG order and then will be scheduling it. As soon as I know more, I will post. Also, since Caleb's immune tests weren't up to protocol standards, we will be doing another tetanus shot soon and hopefully the results will be up to protocol. Fingers crossed!

Caleb has definitely started to get the concept of signing. It is great to start being able to communicate with him more. He is very smart-but what mom wouldn't say that. HA HA He loves saying the word 'alligator' and signing it. So cute...Brian and I are looking for a stuffed alligator for him. He also loves giving kisses, I personally cannot get enough of that! He is crawling and cruising more. We are also trying to transition him out of his crib, but haven't found a safe option yet. We will though-I am determined (and so is my friend Jen-thanks Jen)! He also has asked to get up in his highchair more, which is great milestone, as anytime he is in that we do feeding therapy. So my hopes are is that he will become more tolerable of this situation. He even signed, once in the highchair the other day, 'eat', and when I asked him if he wanted a bite he pointed to him mouth and opened it AND let me put a spoonful in. He didn't swallow, BUT that is absolutely amazing for him to communicate with me regarding feeding and to want me to put a bite in his mouth. Since then he has signed for a bite but has shut his mouth when I put a spoonful to his mouth. But like I have said before, to have a day like we had the other day proves that he can do it, we just will have to be patient, as always, because it could be few and far between.

Well I have to go tend to Caleb, but wanted to post. I will start posting more reguarly again (just wanted to leave that last post up for awhile) Thanks all for checking in on us and feel free to leave a comment by clicking on the 'comment' link.

God Bless you all!

God Bless Caleb!!

Third Time IS a charm!!

Well through multiple emails today with Dr. Markert...we have just received word that Caleb responded to the third tetanus shot. So his immune system is showing signs that it is starting to work!!! Hallelujah!! Per Dr. Markert's testing protocol a 20 fold response is needed; he was slightly under that but better than the control. I was somewhat confused by her response as it sounded pretty good, we just didn't know how good. I was not going to let myself get excited until I heard more. I then responded to her asking her 'can we open the bottle of champagne we have been saving' she quickly responded 'yes, and maybe I'll have a glass of wine myself.' WOW WOW WOW his immune system has started to work. Because his response wasn't up to protocol level he will get another tetanus shot in February along with another batch of blood work in March or April and then we will see how he responds to that tetanus also. She didn't go into much more detail: regarding his isolation precautions, visitors, etc. But we are hoping those details will be expanded upon soon; possibly after the next tetanus shot when he hopefully hits the protocol level. She also said in her last email that she will keep Caleb on those pseudo-immune system infusions until September; then in January of next year she will give another tetanus vaccine to see if he can make antibodies (the other part of his immune system that is the immune system's 'memory', B-cells, that will now need to start working). If he makes antibodies then he will not need the pseudo-immune system infusion anymore. She then went on to say 'we can save another bottle of champagne for that occasion.' So...no, we are not out of the woods, but his immune system is starting to work!! WOOHOOO!

Photo and video editing at www.OneTrueMedia.com

God Bless you all!!

God Bless Dr. Markert and her team!! We love you Aunt Louise!!

God Bless Caleb!!

Line Pulled

Fortunately, Caleb's wonderful Dr., Dr. Frangiskakis, called today and after I described to her how the line looked and where he was in his course in antibiotics we decided to pull the PICC line. So needless to say, after I got off the phone with her it was pulled. Again, we will have to watch him closely and pray that over the next couple days he does not present with an infection. Even though this is a nervous time as we are watching him closely and praying for no infection; it is also a big step for Caleb. . . this is the first time we are going to try to not re-place a central line. If he does okay without a central line, this would be the first time he would be without one since he was 6 months old.

Also, many of you have been sending me emails asking about the Immune Tests results...we still haven't heard anything. I am hoping we are going to hear something soon and praying that it is good news! I promise as soon as I hear anything I will post the results!

Again, thank you all for the emails, prayers, and concern.

God Bless you all!!

God Bless Caleb!!

Darn Central Lines

So it stinks that I have to start this post off this way, but Caleb's new line doesn't looks so great! We called the doctors (Diagnostics, Infectious Disease, and Allergy and Immunology) and we will be keeping them informed of any changes throughout the night and we have been told that, of course, if Caleb's demeanor should change in anyway to get him to the hospital ASAP. We also drew cultures to see if anything is growing in his line. We are praying hard that his skin is just irritate and not infected. He has until Wednesday at midnight for the course of IV antibiotics to be done, and then we are pulling the line after that dose. Unfortunately, these antibiotics don't cover all bugs, so there is a chance he could get another bug and get another infection. We are praying hard that he stays infection free! I will definitely keep you all posted!

God Bless his IV!!

God Bless you all!!

God Bless Caleb!!

Home Sweet Home but Stressed

Hello all....I am happy to report Caleb is home and I want to thank you all for the prayers!

Updates: He came home with an IV that is a little more permanent than one that you would get if you were in the ER or admitted so that I can administer his IV antibiotics here at home for his sepsis. Poor little guy was very sick! This was his third life flight. I told him when we were boarding the helicopter that I would like our next helicopter ride to be a sight-seeing one and not for medical reasons. The flight crew was awesome and he did get more momentous from them, t-shirt and pin, proving that yes once again he rode on a helicopter. Thank you guys for taking such wonderful care of our son!
While we were there we took care of a couple other items, other than those that were involved with the sepsis (i.e. water retention, oxygen saturations, heart rate, etc) He started to drop his oxygen saturations (d-sat) and also started to brady (drop his heart rate). He was put on oxygen one night to help keep his saturations up and now is on a pulse oximiter (instrument that measures heart rate and oxygen saturations) here at home to see how is trending. He is now on another nasal spray to see if that will open up his nasal passages and help him breathe at night. Lastnight, he did saturate at 100% from time to time and I was so excited He continues to have a low heart rate. He has done this before and the cardiothoracic surgeons did tell us, after his open heart surgery, that as long as he is perfusing well (extremities stay warm) there is not a concern. I am hoping with a couple more days of recovery, here at home, that his heart rate will normalize. However, we will probably need to schedule a clinic appointment with cardiology in the spring (as long as nothing emergent arises) to have a follow up as he did have open heart and he should be checked in clinic periodically. Also, he was fitted for a new hearing aid mold as he lately has been taking out the hearing aid very frequently and never did this before. We are hoping that once his immune system kicks in we can have his hearing checked in clinic as all his hearing tests have been performed under General Anesthesia and we are wondering if the test in clinic may yield different results. His Mic-key button was changed out as he is a growing little boy and needed a bigger size to accommodate his growth, no failure to thrive anymore! We have also transitioned him to a more age-appropriate formula to feed him through his feeding tube. Right now we cannot get a hold of how his gut is handling it, as in the past he has issues absorbing formula due to his immunosuppression, because he is having diarrhea due to the strong IV antibiotics he is on. So once the antibiotics are done, we will get a better idea of what is causing the diarrhea. So we are definitely not out the woods and our stressed as we listen tot he monitor alarm, but it is nice to be home and we pray that Caleb's condition continues to improve.
As stated in the last post, our poor dog Saba, new something wasn't right with Caleb when he got sick at home. She followed me from room to room as we were getting stuff ready to take him to the ER. My mom and dad watched Saba while we were at the hospital with Caleb. My mom called one day while we were there to inform us that Saba was getting sick and not holding anything down. We had her checked at the Vet, wonderful Karl, to see if she was okay as she is getting older. After some normal bloodwork results, we are beginning to wonder if Saba is suffering from stress and anxiety like we do. She is resting now at my feet, and I am hoping she feels better very soon.
As if our life isn't stressful enough one additional stressor seems to be hanging on. I debated about posting it, but need to vent...As you all know we fired one of our nurses back in September due to ongoing questionable and unethical actions. We then asked our nursing company to let her know when they were terminating her employment from the company to stop contacting us. Unfortunately, several months later she continues to feel justified to act this way and to harass our family from afar. When she worked here, she gave Caleb a highchair, AS A GIFT. She recently had her friend write a letter to the nursing agency saying she wants the highchair back along with some personal items that were here. Her personal belongings, a cell phone charger and a book, were returned but the highchair was a gift and we didn't feel it was right that she was trying to take a gift back so we did not give that to her. Her friend then wrote another letter to the nursing company saying she wants the highchair back and that it wasn't a gift. Are you kidding me?!? Honestly, I feel sorry for her...I really do. It is sad that she feels justified in her actions to feel the need to bother our family, like we do not have enough to deal with. I don't know what we are going to do...I don't think it is right what she is doing...but in the same regard...maybe if I give her the gift back she will leave us alone! If we could get a guarantee that if we gave her the gift back she would leave us alone, that would be a positive.
Okay enough of the venting...I feel better!
Again, I want to thank you all for the phone calls, emails, etc. I will update soon to let you all know how things are going. Thank you again for checking in on us!

God Bless you all!!

God Bless Caleb!!

Another Life Flight

So on Monday afternoon Caleb was getting a bath and was in a great mood at the beginning of the bath, giggling and playing. By the end of his bath, 10 minutes later, he started to get very fussy. The nurse and I got him dressed and he still was pretty upset. Our sweet dog, Saba, was right by his side the whole time he was fussing. So by the time we got him downstairs, he started to get very lethargic and turned a shade of gray. I then asked the nurse if she could take his temp before she left. Unfortunately, he was running a temperature of 103.2 and his status continued to worsen, he got very 'floppy' and unresponsive. We called his doctor, Dr Susan Frangiskakis, and she told us to go immediately to the local ER so they could get him stable for transport. He was there long enough to get some blood work drawn, start fluids, and antibiotics. It was then decided that due to his vitals, unbelievable high heart rate, low Oxygen levels, and deteriorating neurological status that he needed to be transported by helicopter. Thankfully, Children's transport got their and were awesome as always! They got him on the helicopter and he was doing pretty well. We found out there were no PICU beds available so once we landed he went to the ER. From their he went under an evaluation and they believed his central line was infected, therefore causing sepsis (bloodstream infection). He was stable enough to go to a regular floor under close monitoring. Sure enough the line cultures came back positive for a nasty bug that says makes kids feel pretty sick, one of the worst bugs. So he slept for a couple days and the second day he was here they took him to surgery to remove the central line. Today was his best day as far as his personality but we still are having some issues. He is not keeping his Oxygen saturations up and we are not sure why. He is also bradying (dropping his heart rate) but this is not a concern as long as he is perfusing well (his extremities are warm). They did a chest xray to see what is causing the low O2 levels and there is a questionable spot that we are watching. They will be watching him tonight and based upon what his levels do the docs will order certain tests. He is schedule to get another line, not as permanent as the broviac yet not as temporary as a peripheral so if he can get discharged I can administer his IV antibiotics at home. So that is where we are for now...I have probably left some things out and have probably made some typos. I am sorry I am trying to do a very quick update here at the hospital.
Thank you for all the prayers!
God Bless Caleb!!

Christmas at HOME!

Okay, so it is official! Caleb spent his first Christmas at home! It was amazing and emotional to say the least! We had a great time! Unfortunately, both sets of Caleb's grandparents were sick so they were not able to come as we cannot take the risk of possibly exposing him to something. We will do Christmas with them when they are better.

Caleb woke up bright and early Christmas Eve, which was kind've ironic; like he knew how momentous this Christmas was. Brian and I, being the cautiously optimistic people we are, did not say anything about Christmas being at home until it was actually Christmas day and we were at home. We know how quick the situation can change. It was so much fun to get Caleb into bed Christmas Eve and to know we could run downstairs and play Santa! We had a ball. The next morning Caleb woke up early again and we brought him downstairs and dove right into the presents! It was so much fun! Due to his sensory aversion issues, it did take him awhile to 'warm up' to each gift. But when he did he had a ball! So darn cute! We also were blessed, yet again, by all of our wonderful friends by gifts on our front porch throughout the day. Thank you all. Caleb rarely naps however, yesterday he needed one. I rocked Caleb to sleep in his rocking chair in his room yesterday for his nap (which is still a new thing for us as we didn't get to do this while he was in the hospital-so I love when he settles and lets me rock him). He had a great nap and then we were ready to watch the story on Channel 7 regarding Caleb. It was beautiful Stacy did a great job, Thanks Stacy! She is working on posting a link to their website and once they do I will link it on this webpage for those of you that are out of town and did not get to see it!

I put a montage together for you all! It is too cute! Merry Christmas everyone and Happy Holidays! Check back for the news story link!

God Bless you all!!

God Bless Caleb!!

Make an on-line slideshow at www.OneTrueMedia.com

Merry Christmas

We just want to wish everyone a Merry Christmas and a Happy and Healthy Holiday!

Also, I just got word from Stacy Rich that Caleb's story will air tomorrow on some, maybe all, of the evening newscasts on Channel 7 at 5,6,10, and 11 and may air on Friday morning's show (5-7). She again appologized that she wasn't given more time for his story, but, again it is enough time to thank you all for helping us the last two years and to get his story known to those who still don't know him. Sorry I do not have defnite times, but just check tomorrow evening and Friday morning.

God Bless you all!!

God Bless Caleb!!

Some Media Coverage and Another Video

Hello all...Well I know some of you who know are anxiously awaiting the details regarding the specifics of Brian's and my meeting today with a local news reporter here in the Valley. It went great! We met with Stacy Rich from Channel 7. She was so nice and made us both feel very comfortable, thanks Stacy! Unfortunately, she did let us know that she thinks she will only be allotted approximately 3 minutes for the piece even though she asked for more. Not a whole bunch of time, but yet enough to get his story out there and known to those who don't know him and for us to be able to thank wonderful people like you all for being such a wonderful support system for our family. She did say that she thinks it will air on Christmas Day and will be available online. She is going to let me know when she finds out the definite air time and date, and I will definitely let you all know and will see if I can post the link the day it airs on here for those of you who are not in Wheeling so you can see! Who knows maybe when this story airs, there will be others who will want to do stories also. Thanks again Stacy, it was so nice to meet you!



Other updates:

Caleb's line looks less red! We are hoping and praying that it continues to improve and thank you all for your prayers and thoughts you have been sending our way! We are so appreciative.

Caleb continues to pull up to stand as shown in the previous post's video and he is getting quick at it too!

He also, ready for this, has been putting teethers in his mouth AND biting on them, which is a big step as far as sensory input.

He has also began to pretend spit. I know how many parents are happy that their child is spitting...but this is such a big step as you have to push your tongue against your cheeks and lips to do this, so I will let him spit all he wants! We are still working with feeding and drinking . He continues to tolerate cups and plates better in his area which is amazing.

Caleb received his pseudo immune system infusion (IVIG) last Tuesday. We are tentatively planning to start his SUB-Q infusions, as discussed in an earlier post, this week. I have been trained on how to do this too so I will let you know how it goes. He will then get one infusion a week! This method has its pros and cons. IVIG is a very strong drug and when infused even in a central line (IV) adverse reactions (elevated temperature, respiration / breathing issues, severe rashes, etc) can occure. Therefore, one of the bad things about SUB_Q infusions is that since he will be getting it in his fatty tissue rather than in his central line(IV) these reactions can be more intense especially in regards to rashes on the skin. So that is definitely one thing we will have to watch and see how he tolerates it! The very big pro about SUB-Q infusions is that because it is given on a much more frequent interval, as comparted to the central line infusion, his levels will not be allowed to 'bottom-out' and should stay at a higher level; which in theory will hopefully provide him better protection.

I drew blood for his 3 round of Immune Test last Tuesday! It has not been a week and I already have become impatient and am wishing that by some miracle the results would come back a lot sooner (as the results usually take 4 weeks) yielding good news! We are praying that (as one of Caleb's doctors said) the third time is the charm! Come on T-cells!



As promised a video of little man! Again, sorry it was a quick video grab with my cell phone so the quality is not the best!

God Bless you all!!

God Bless Caleb!!

Make an on-line slideshow at www.OneTrueMedia.com

Line Update and a Video

Well the line still looks about the same and unfortunately due to the frequent dressing changes his skin that is underneath the dressing is very irritated also. Poor guy! So dressing changes are pretty painful for him because you use alcohol to clean the site. However, it does look slightly less red than lastnight when I put Caleb into bed. So I am praying that the redness continues to lessen!

We drew blood for Caleb's Immune Tests on Tuesday so hopefully we will hear in a month that his Immune System is working! We are praying that the third time is a charm!

I have a little video below that I thought everyone would enjoy. It is not the best quality as I took it with my cell phone, but I thought everyone would want to see! Enjoy!

God Bless you all!!

God Bless Caleb!!

Prayers Needed

Well all...a couple days ago Caleb's central line site did not look so great. The area right around were the IV goes into his chest was very red and warm to the touch. We called the docs and they then told us to change the dressing daily and to put bacitracin (antibiotic ointment) on the area when we change the dressing. The warmness at the site has lessened and we are praying that the redness goes away and that Caleb does not spike any temperatures. Line infections, for kiddos with in an immune system is scary enough, but without an immune system to fight off these bugs is even scariers. So we are asking for prayers please that the redness goes away and that this is a minor irriation and nothing else. I will keep everyone updated!

God Bless you all!!

God Bless Caleb!!

Synagis Approved

Well we got word that the Synagis shot we have been fighting for has been approved! Due to two of Caleb's doctor's fighting diligently on his behalf along side of us we got 'word' that an approval has been authorized. The doctor's haven't gotten the official documented approval yet, but a phone call was made to them that the insurance had approved it. We have been fighting and appealing for this shot since September. This shot is administered in phases, once a month from October to March. So, yes, we are a little behind. But something is DEFINITELY better than nothing. Thank you Dr. Nash and Dr. Scholnicoff for you hard work! We love you guys! God Bless you!

We also are preparing to start Sub-Q IVIG infusions. What this means is the following: Caleb has been getting his 'pseudo-immune system' via IV infusions via his central line once a month. We are now going to do SUB-Q (inserting a needle in the fatty tissue in the hips, thighs, gut, or backs of the arms) IVIG infusions once a week. Even though this is a more frequent infusion for young child, it theoretically is less of an infection risk than accessing a central line to do the infusion. The plan then is...(drumroll)...possibly removing Caleb's central line in a couple weeks! We still are ironing out what Caleb's blood draw schedule will be if we would remove the line. The line will have to be removed under General Anesthesia, surgery, because it is tunneled so deep into a vein and it cannot be removed like a peripheral IV. We will then see if we can get some other small operative procedures done at that same time. We do this because Caleb has been exposed to so much GA (General Anesthesia) because of all the surgeries he has had that if we can group some things together the better and try to limit his exposure to GA.

Brian and I are meeting with a local reporter regarding Caleb on Tuesday also. We will let everyone know the details when we know more.

I will post updates again soon!

God Bless you all!!

God Bless Caleb!!

Blood Tests Scheduled, Updates, and Media Coverage

So we have gotten word that we are going to draw blood on the 16th of this month to check to see if Caleb's T-cells have responded to the third tetanus shot. We are hoping and praying that the third time is a charm! Then of course, we will have to wait for around three weeks to see what the blood work results. It would be great, if by some chance, the results could come back showing a response before Christmas, but, we know that we will probably have to wait until after the 1st of the year for the results.

As I said in the previous post, Caleb continuous to become more mobile. He has definitely started to crawl more and has now even started to crawl faster. He has tried to pull up to stand and seems like he tries to do this more every day. We still are fighting the sensory and feeding issues. Tonight at dinner, I was able to get about 7 bites of ham (stage 1 food) in his mouth and he probably cleared (swallowed without gagging) about 4 bites. We have found out that Caleb definitely likes sour tastes more than sweet, so we do therapy (try to get some of the sour salt off the gummy in his mouth )with Sour Patch kids to try to get him to stimulate him orally. For all that know my sweet tooth, I love Sour Patch Kids, so when that therapy time comes around we have a blast (probably me more than him though :) ) We are still trying to communicate better with Caleb. We believe what is going to work best for him is to sign and speak. We have been able to get him to say 'ho ho ho' for the Holidays and it is so cute! He also has started his own sign to let me know when he want me to pat his back. He will pat his chest and let me know to pat his chest. I then tried to see what he would do if I was not looking when he was trying to let me know to pat his chest. He then amazed me by grabbing my arm to get my attention, then started patting his chest. I will try to catch some of this on video so hopefully I can post it. He amazes me every day!

We still cannot get insurance to cover Caleb's Synagis shot (the shot that would protect him for a life threatening illness). The insurance company, after repeated appeals and wonderful letters from all of Caleb's doctors states they do not have to provide the shot because their is 'not enough medical documentation in regards to these kiddos and their syndrome and the need for Synagis'. Their reasoning is completely negligent and I cannot believe they use that as their reasoning. We continue to explain to them that of course there is not a lot of documentation because these kids with DiGeorge are very very rare. Caleb was the 50th in the world, so of course there is not going to be a lot of medical documentation in the FDA's records. Also, the treatment of this syndrome, the transplant, is not even been accepted by the FDA yet despite what Dr. Markert's research has shown. I don't know who else we can contact to help us on our behalf to try to get them to understand the need for this shot. Caleb's doctors have explained the risk of him not getting the shot and if that doesn't provoke them to get him the shot I don't know what will.

On a lighter note, the insurance HAS finally approved and upped our nursing hour coverage! We haven't gotten the legal copy of the approval in the mail, but we have been led to believe that he will get at least (maybe more!) of 12 hours of nursing coverage a day, seven days a week! I will confirm with everyone when we get the official copy in the mail.

Also, not that this blog has detailed Caleb's journey enough, but I have started to write 'Caleb's Story'. I just feel this would be a great keepsake for us, Caleb, and anyone else who would like to read about our remarkable little boy. It is definitely going to take a lot longer than I thought and is definitely very emotional to re-live most of the last two years but I think it is very important for Caleb to have in the future.

Brian and I are also considering meeting with the local media to do a story on Caleb, as we have had some initial contacts regarding Caleb and his journey. Not only to show everyone in the Valley what an amazing little boy is here in the area, but, how wonderful others have been to our family over the last two years. Not only have we been amazed by our son, but we have been so amazed by everyone's generosity, caring, and support for our family.

God Bless you all!!

God Bless Caleb!!

Well Thanksgiving went well! The bigger news is that Caleb took seven bites of mashed potatoes and one bite of my cheesecake. He hasn't really eaten anything since, but it was a wonderful Thanksgiving. However since Thanksgiving Caleb has put teethers in his mouth every once and while! He hasn't ever done that either-so a big step for him!
Due to illnesses, the therapists have not been able to come on a regular basis as of course they can't come due to Caleb's immunosuppression. But, once again, Caleb has proven how tough he is and has really started to crawl more. It is so awesome to see him do that. He also has started cruising just a little bit along our coffee table. He also has pulled himself up a couple times too. So we are hoping he will continue to become more mobile. I went into his room the other morning and I was so excited to see him sitting up in his crib. Yes, he has been sitting up on hard surfaces for awhile. But sitting up on a softer surface requires more muscle control and I was ecstatic to see him sitting up. We have noticed that when we are 'walking' with Caleb that he turns his right knee out. The physical therapist said we will have to keep an eye on this to see if it is just a stage or if it something due to his double hip dysplasia he had at birth. He also is keeping his feet in a pointed position, so we will be keeping an eye on this too. If they stay pointed, he may require some type of brace down the road so it does not impede him from walking.
Well I have to go bolus feed the little man so I will post again soon as there are still many updates.

God Bless you all!

God Bless Caleb!!

A couple updates:

Well we decorated the house for Christmas, a little earlier than I have done it in the past, but we figured since we haven't decorated for the past two years. It was so much fun and Caleb loves all the decorations. He helped/played with the decorations as I was decorating. It was nice to put his 'hospital Christmas tree' in his bedroom this year! Hopefully it will stay there! I am praying we can keep him out of the hospital this Christmas! Here are a couple pictures...sorry they may not be the best quality as I took them with my cell phone.

It is hard to believe that it was almost a year ago that Caleb finally came back to Children's Hospital after we were at Duke hospital for 7 months. WOW. I actually came across some pictures/videos from my old cell phone yesterday....and wow what a mixture of emotions on memories. I honestly don't want to go into it too much, because it is honestly too hard, but I think there was a time when we weren't aware of how sick he looked when we were waiting for the initial Immune tests/diagnosis to come back. I hope and pray that we can have more happy and healthy memories ! We continue to pray that this tetanus shot will spark his immune system and it starts working. A lot of people have been emailing me asking me when we will know if this shot worked. Well...you have to wait at least a month after the shot is given to draw the labs.

Then is usually takes 3-4 weeks for the lab results to come back. So...a long two months. Caleb's doctors have been awesome emailing and

calling us telling us to keep our chins up. They have been so wonderful to our family.

Also, for those of you who know my cooking abilities ...I am going to try to cook Thanksgiving Dinner. Hopefully we can keep Caleb out of the hospital for this Thanksgiving. If we can, this will be Caleb's first Thanksgiving at home! So what a celebration! So even though we are shut-ins, and live in our little 'bubble' to protect our little man. This is such an exciting time. Appreciate the small things! Be thankful, be Blessed!

Also, thank you to all of those who emailed and called when we got the results back earlier this week and we were a little down. You all are so awesome to us and we are so grateful. God Bless you all.

God Bless Caleb!!

Have had Better Days

Well...Caleb's bloodwork results came back today to check his response to the second Tetanus shot to see if his immune system is working. Unfortunately, there was a low response. Brian and I are both upset and feel like the wind has been taken out of our sails. I honestly think this is one of the 'lower' days we have had in awhile! So needless to say it has been a very emotional day.
I was able to ask Dr. Markert a couple questions today: 1. What next? and 2. Do we need to start worrying that Caleb's immune system might not ever respond?
First, there has been enough of a time lapse per the transplant protocol that Caleb can get another Tetanus shot. So thanks to Ellen (Caleb's AI fellow in Pittsburgh) who got the shot ready, my Dad (who picked up the shot in Pittsburgh and brought it to our house), and Angeline (Caleb's nurse who stayed over to administer it); Caleb got his 3rd Tetanus shot today. Thank you all for making that happen on such short notice. So hopefully the third time is a charm. Second, she is optimistic that since he was able to get off his IV nutrition that maybe that means his immune system is trying to work-but she cannot provide any guarantees. She also said she is not any more worried about his lack of response, however she says she will always worry, as she does with all her kids, until there is a response.

So please I am asking everyone to pray hard for Caleb and his Immune System and that he does get a response and that his Immune System starts working!

God Bless Caleb!!

UPDATES!

Couple updates for all of Caleb's fans:

Immune: Well we will be checking Caleb's immune system next Monday. I just got the go ahead from Dr. Markert to draw his blood on Monday to see how he responded to his second tetanus shot. We are praying really really hard that the blood work shows a response. Unfortunately, the blood results usually take about three very long weeks to come back...so stressful of a wait. We were hoping to maybe have had some results back sooner (as always); so if the results showed function maybe we would have gotten the go ahead to see the grandparents at their homes on Halloween, but maybe next year.

Bathtime: Okay so Caleb was sponge bathed the whole time he was in the hospital and we continued to do that when we first got him home until we figured out a method to try to protect the IV from water. We use Saran Wrap press and seal over his dressing-works pretty good. Anyway, he did not like sponge baths (as all the nurses from Duke and CHP will tell you) or baths in an infant tube. He would cry from the point he got in to the point he got out. At times he would get so upset, he would turn blue, vomit (which makes is a whole other issue with a feeding tube and a Nissan Wrap and I will spare everyone with the specifics). His therapist said it is probably part of a fear of something new and due to his sensory issues. HOWEVER, I decided a couple weeks ago to put him in a regular tub. It definitely took some getting used to, but I am happy to say he loves it now. Now he cries when you take him out. I have pics and I will post them soon.

Therapy: He has not really crawled since the last post. We just signed the releases to get PT and OT in here so hopefully they can work with him and get him a little more active and mobile. Caleb walks with support, therefore, I am wondering if for a little while if it would be beneficial for him to have a child's walker to give him some independence until he is able to walk without support. As far as eating...he a couple times has put a fork or spoon up to his mouth on his own. Once or twice he has managed to get a small bite in his mouth, but he doesn't know what to do with it at that point and starts to gag. We have been told by his speech therapist to only let him feed himself and that we should not feed him as forcing food upon him may make him regress with his process. So when Brian and I sit down for meals we put Caleb in his highchair at the table and let him play with his food and do with it as he wishes. Even if he puts his hands in his plate, this is a huge hurdle for him as he didn't even used to do that. We are still trying to figure out what is the best way to 'communicate' with Caleb. We do sign language, pictures, and oral communication and we are trying to figure which one of these three is the best way to bridge this communication gap. However, I did catch him today holding an index card that has the ASL (American Sign Language) alphabet on it and while holding it he was pretend signing with the other hand and babbling when 'signing'. SOOO maybe he will do okay with ASL. After todays events I have been signing like crazy with him.

Insurance: Caleb's doctor at Duke, wonderful Dr. Markert, filed an appeal on Caleb's behalf (as weird thing is I cannot file an appeal as I am the mother - tell me that is not messed up) to petition for more nursing hours coverage and to make the insurance company cover his Synagis shot. They have denied his Synagis shot (shot that protects him from a very bad respiratory infection, which can be life threatening, called RSV). I also heard back from Governor Manchin and Senator McKenzie and they are both inquiring certain agencies regarding the issues we are having with Unicare. I contacted more individuals but these two responded quickly and are already being proactive in regards to Caleb. The other individuals I have contacted have chosen to ignore my emails, phone calls, etc. So needless to say if they are up for re-election they will not be getting my vote.

Nursing: Well, I know some of you are aware but for those of you who are not, we had to let go of one of our nurses. We just need to have someone who is here for Caleb and Caleb only, without drama, lies, saying/doing questionable things in front of Bri, myself and our parents, etc. We are fortunate enough to have a nurse now that we thought at first was only going to be able to work 1-2 days a week, because she did not want to initially leave her other job. However, we lucked out and this nurse is now on Caleb's case full-time (8 hrs 5 days a week), as she wanted to leave her other job and work with Caleb after spending time with him for the first couple days she was here. (Maxim is in the process of getting more nurses for this case.) She is VERY competent and has experience in the PICU and I feel more comfortable that she will not 'flip' about the smallest things-like we have dealt with. She is also really knowledgeable regarding therapy and is very involved when Caleb's therapists are here. I hope that we can continue to get more competent nurses like the one we have now.

Well, Brian just got home from work so I am going to end this update here. Now that we have a nurse I will definitely be able to update more frequently! So check back soon. Also if you want to be notified when an update is added to this blog, you can become a 'follower' by following the 'follower' link on the left side of this page and signing up to be notified!

Thanks again to all for checking in on us! God Bless you all!!

God Bless Caleb!!

So Amazing!!

Okay so it's time to brag! Brian, Caleb, and I were hanging out on Sunday and Brian and I were sitting there talking when we both noticed Caleb started to CRAWL!! We were in shock! We didn't yell while he was doing it, as one of his many sensory issues is an aversion to loud noises. So when he does something like that you have to be careful how you react - no loud applause or YAYS, but he knew it was something great because when he was done he sat up and gave Bri and I the biggest smile. It was awesome, we both got really emotional. We knew someday that he could possibly crawl, but didn't think he was going to do it this soon. He hasn't done it again since, but we now know he can do it!

Also, Caleb got his tetanus shot on Thursday. Poor nurse Angeline - sometimes I think it is harder on the nurse! He also had the last dose of his Immunosuppresion medicine, Cyclosporine, last Wednesday. Dr. Markert and I were emailing back and forth last week and she is wondering if the fact that he was still on the Cyclosporine when he got his last Tetanus shot may have not allowed his body to react well from the shot. She said that since he was still pretty much on the Cyclosporine for this shot too, she is not sure if his body will react from this Tetanus shot either. I guess we will find out in a month when I draw his blood. Remember, this is still a pretty new procedure, the transplant, so it is still a learning process for Dr. Markert too. She said that in the future, she will probably not give any kiddo the Tetanus unless they are off the Cyclosporine. She is amazing. She was also very excited about Caleb crawling.

Caleb continues to do well with his therapy sessions. We are trying to get him to take stuff by mouth. He surprised me yesterday. . . I always put food in front of him just in case he may want to try it. This is even a big step for him too as he used to not even tolerate a plate with a couple items of food in his 'area' due to his sensory issues. But yesterday he took a couple of those cereal puffs that disolve in his hands and placed them in his mouth. Again, I had to act like it wasn't a big deal but WOW. I immediately called Brian on his cell phone and told him. Once Caleb put the cereal in his mouth though, he didn't know what to do as this is the first time he has done this ever in his life. Who knows when he will do this again though, as we have been told repeatedly that kiddos like Caleb with severe sensory issues may have a day like that and then it may be AWHILE until they do it again. But I am so glad we had that day! I truly believe the more we can let him 'control' the feeding situation the better. I guess we will have to wait and see.

I am in the process of trying to get help in regards to Caleb's insurance coverage for nursing and for billing. We just found out we owe $500 more to Duke when they have already billed over 1 million . . .and that is Duke alone ....who knows how much Children's bills will amount to. But I have been in contact with Governor Manchin, Congressman Mollohan, and all the senators offices so hopefully they will help us with this as it is getting overwhelming.

Well I have to go give Caleb a feeding bolus. Have a great day and thanks for checking in on us.

God Bless you all!!

God Bless Caleb!!

TPN or No TPN?!?!

So far Caleb is still off his TPN (intravenous nutrition). His blood work since we took the TPN away for the most part looks good. His body is not maintaining his protein level so we will probably need to add a supplement to his diet until he can manage that better. I, for now, am only drawing his blood once a week, unless he is symptomatic then I will draw and check his levels. I still have to flush and change the cap on the IV three times a week but it is definitely better than accessing that thing daily and hooking stuff up to it daily. He still needs that central line for his IVIG (fake immune system) infusions, so we cannot get rid of the line yet.

I talked with Dr. Markert and asked her if Caleb still needs the monthly RSV (bad respiratory infection) shots this winter and she, Brian, and I all agree that he should get it this winter, due to the immunosuppression. He will also be getting his tetanus shot tomorrow. Let's hope he responds to this one better.

Caleb did great this week with his therapy sessions. He is so amazing. He has now figured out how to get up on both his knees and hands, now we are just praying he starts crawling soon! This is unfortunately another delay due to his LONG stay in the hospital but we are amazed by this tough guy daily. He is overweight so we have cut his caloric intake from his formula (as he is still getting all nutrition via his g-tube/feeding tube) until he gets more mobile. Hopefully, he gets more mobile soon, so he can start being more independent and so he can start to burn more calories. We all continue to learn more sign language so that will help with the communication process.

Here is the video I promised a couple posts ago sorry, with a couple newer pics attached. Enjoy! OH a clarification on the gowns, masks, etc.,as people ask why some people are wearing some things and some aren't. Everyone except Brian and I wears a mask. The doctors philosphy is whatever we have been exposed to Caleb has already been exposed to. However, if either of us come down with something new then we would stay somewhere else if really bad or mask if not as bad. All people visiting except for the great grandmas change into clean uncontaminated clothes once they get here so they don't need to gown. Just a clarification as I know it may be confusing when you see the slideshow. Again enjoy! Thanks for checking in on us!

Make video montages at www.OneTrueMedia.com

God Bless Caleb!!

Happy Anniversary Caleb!!

Happy Anniversary Caleb!! Today is Caleb's 1 year anniversary of his Thymus Transplant. We continue to pray that it starts to work and give Caleb an immune system. Keep up the good work Caleb!!
God Bless Caleb!!

Two Big Updates

Well two big updates.

1. Tonight is Caleb's first night off TPN (IV nutrition) and he is on total gut feeds via his g-tube(feeding tube). We are praying that Caleb can tolerate this change and not run into any issues like when we tried to get him off TPN before. Nervewracking and exciting.
2. Tetanus response: Well it wasn't the results we were hoping for. Dr. Markert let us know today that Caleb had a small response to the tetanus and she suggested doing another shot(two months after origional was given-so around the 20th of this month) and then doing lab work a month after the second shot is given and see if there is a response. She said some of these kids may have to do up to four shots to get a response. So. . .I guess we will see what happens as far as a response to the next tetanus.
Thanks for checking in on us!

God Bless Caleb!!

New Link at Left

Just an FYI. I added a new link (at left) . It is a new article on Duke's website regarding Caleb's awesome Dr., Dr. Markert, and her work saving babies like Caleb.

The picture at right is a picture we were fortunate enough to get of Caleb with Dr. Markert while we were at Duke. God Bless you Dr. Markert and your amazing team! Keep up the good work!

God Bless Caleb!!

A Walk a Little Further from Home

Brian, Caleb, and I were suffering from extreme cabin fever...so we did it!!

We left the house and went further than a block from our house.
We went to Oglebay for our nightly walk. We were all so excited on the ride up to the park.

Once we got there, we got out, straightened out his IV and feeding tube and we were on our way.

I have to admit, I got choked up. So awesome to do something like that with Caleb. He go to see deer, huge trees, the big fountain they have in the lake. It was so nice to be in a different area. There park was not crowded at all. There were only one or two other people on the path so we were able to pull the stroller over to the side and keep him at a safe distance from other people. We liked it so much we went back two days later. We had a ball.


I hope you enjoy the pictures we took. I know a couple look a lot alike, but we were so excited we had to take pictures!!


A couple side notes:

• I drew bloodwork last Tuesday to see how Caleb reacted to his Tetanus shot. The results can't come back soon enough. It may be up to a month before we hear anything. So please pray hard that his immune system reacted well.
• Caleb is now up to (ARE YOU READY?!?!) 80 mls/hour continuously on his gut feeds that are being given through his g-tube (feeding tube). If all goes as planned (again please pray hard for this too) Caleb would have three more increases on his feeds (and 3 more weans on his TPN -IV nutrition respectively) and then we would try to see how he does without the IV nutrition. This 'big switch' could happen at the earliest on the 8th. So please pray hard that he gets there with no problems and that he tolerates it well as the last time we tried this Caleb was life-flighted back to Children's, went into cardiac arrest, and was in the PICU for awhile.
• The therapists, Developmental and Speech, came and did there initial evaluations. No surprise that Caleb has a huge sensory issue that will need a lot of therapy. The speech therapist told us to hold off on trying to feed him by mouth as she believes she has to deal with his sensory issues all over before even trying to put anything in his mouth as this is sensory related also. We are going to get a Physical Therapist and an Occupational Therapist to work with him also. As they can work with him also on his sensory issues as well as some of his delays that were caused by being in the hospital for a year and a half. They are great girls and we are really excited for Caleb at how this therapy could help him.
• As far as nursing and insurance - as many have been asking. The situation is NO better. I appreciate all the emails and calls and I am definitely heading everyone's advice. I just don't want this issues to overshadow Caleb's tough work lately and I want to keep this post a positive one.

I also have a video montage ready, but I had to show off the pics of Caleb at the park. What a great milestone for the little man.

God Bless you all!! Thank you for checking in on Caleb!!

God Bless Caleb!!

Are You Kidding Me

Okay so to continue on the nursing coverage issue:
The nursing company was starting to get their act together and had hired an RN. Totally different between an RN and LPN in home care as RNs are the only ones who are allowed to touch IVs. Due to the fact that we have never had an RN, as promised by the nursing company, I had to administer all of Caleb's IV therapies which is a daily task. He also requires different monthly infusions which require constant vitals and monitoring and once again no RN was ever provided for those. Nevertheless, it seemed like we were going to get some days of 16 hours of nursing coverage but not all just yet. It is a shame it took the nursing company 7 months to get at least a couple days of 16 hours of nursing care that he qualifies for. BUT, a big surprise happened two weeks ago. I got a letter in the mail indicating that the insurance company was going to pull Caleb's nursing care all together based upon their review of his nursing hours that were being provided and one doctor's comments who hasn't physically laid eyes on Caleb since he was about 4 months old and who knows nothing about him. Fortunately, Caleb's doctors in Pittsburgh received the same letter and called the insurance company and said they couldn't pull his nursing care because of his condition. After Caleb's docs submitted plenty of paperwork the insurance company did approve nursing care, BUT GET THIS, only for 8 hours 6 days a week. Caleb's doctors did try to get him the 16 hours that they believe he deserves but the wonderful insurance company believes that since we have been 'getting by' on the 8 hours that the nursing company has provided and because I can take care of the IV that Caleb only qualifies for 8 hours of nursing care 6 days a week. So I guess, first off who cares about that 7th day if I get sick the IV will take care of itself. Also, I am penalized for learning how to take care of Caleb's IV because the nursing company never staffed his case with an RN. Also, I guess they would rather me not go back to work, go broke, lose my house, and then when we have nothing MAYBE they will help. AMAZING!! ABSOLUTELY AMAZING!!

God Bless Caleb!!

Labs

First, I want to thank everyone for the emails and comments regarding our nursing issues. The drama continues with that situation, how ridiculous.

Anyway, I couldn't post any sooner about the labs because SUPRISE been without a nurse since Monday. But the labs didn't look too bad on Thursday. So Caleb was scheduled for another increase in feeds and a decrease in his TPN on Saturday. We went ahead with that wean and stools so far don't look too bad (knock on wood). I am interested to see what his labs look like tomorrow. I should draw them around 11:00 and hopefully get some results tomorrow afternoon.

Speaking of tomorrow ...HAPPY BIRTHDAY BRIAN. We love you. Caleb and I are so blessed to have Brian in our lives. He is a wonderful father, husband, and friend.

I will try to post tomorrow about Caleb's labs but I am going to try to make Bri some dinner, and for those of you who know how well I cook . . .it may take a couple attempts. HAHA

Again, thank you all for checking in on us.

God Bless you all!!

God Bless Caleb!!

More, More, More

Okay . . . so I posted the other day that Caleb was signing more. BUT he actually signed it yesterday, probably around six times in a row, and knew what it meant as we were playing with his shape sorting game and I would hand him the pieces. When he wanted to play again he signed more. So touching!

Also, today Caleb sat up on his own around seven times in a row! So amazing.

Who knows how soon again he will sign more or sit up, but, we know he can do it. We are so proud of him. What an inspiration!

Well we increased Caleb's feeds up to 45 mls/hour and we may have to hold at that rate for awhile. Today Brian and I noticed that his stools were getting watery again. So far they are not frequent (if they get too frequent he may get dehydrated and labs may go really abnormal), but we don't want it to get to that point. I will be drawing blood in the morning to check how his body is tolerating the change too. We may have to decrease his feeds a little and go back up on the TPN. Not sure yet.

Okay, I don't want to be a drag but I have to post about this because it is my way to vent. Honestly, if I wasn't trying to go back to work to pay bills, I would get rid of our nursing care. Our nursing company has probably hired about eleven nurses. Seven out of the eleven didn't show up for their first day, and this continues to happen. The company calls me the SAME DAY the nurse is to come to the house to let me know she is coming and guess what - now show. One of the girls that didn't show up for four days in a row the company didn't even know that when I called, YET they wanted to try to send her back to the house a couple months later. One nurse that came in lied about her prerequisites and didn't even know how to take care of his feeding tube (pretty basic task for a nurse). Another nurses almost double dosed Caleb on one of his medicines on her first day if I wouldn't have caught her. Another nurse didn't show up for her second day and they couldn't find her and then they said 'yeah she is a little different'. As I have stated before Caleb qualifies for 16 hours of nursing care a day. We have never seen that! NEVER! We get about 8 hours now for about 4 days a week. So it is REALLY stressing me out lately. I do feel a little run down and very stressed because of this. Went to the doctor today for a bad sinus/ear infection and SURPRISE I have high blood pressure. I was one that always had below normal blood pressure. What gives?!?! Again, I don't mean to be a downer, but it's hard and such a continual disappointment that a service that is supposed to be there for your child and your family is still not being provided 8 months later. They guaranteed me when they took the case they could staff it. They can't get nurses to show up and the ones that do....they can't take care of him like they promised the company. I wish they could just pay me for the service they are not and have not been providing. I don't understand why it is this hard to get nurses to show up for work?!?! Do other families deal with this? I really really hope other families don't have to deal with the problems we have dealt with in regards to nursing. It is not fair and very disheartening.

Okay sorry for my ranting, but I needed to vent. I have been pretty upset today as I had another issue with nursing. I'm sorry, I am usually upbeat, but so disappointed with the nursing company and who they send into our home.

Okay got that out of my system. I will let you all know how his blood work looks either tomorrow night or Friday morning. OH YEAH new pictures are coming!!

Again, thank you all for checking in on Caleb. You are a wonderful support system for our family. God Bless you all!!

God Bless Caleb!!

Couple More Updates

Hello all. . .

Well here are some more updates on the little man:

We have continued to wean his immunosuppression drug and we will continue to do so as long as his skin and gut handle the decrease okay.

We have started the communication with early intervention (therapists) so hopefully we can start working with Caleb on feeding, speech, PT, OT, etc.

We are continuing to increase his g-tube feeds and decrease his IV nutrition. He is now up to 40 mls and hour on feeds! So exciting a little over an ounce.

He did get his tetanus shot so hopefully Dr. Markert will be contacting us soon to request his first functional blood work to be drawn. We are anxiously awaiting for that call.

Caleb is amazing me every day. His new thing is he loves yelling our dog Saba's name. I don't think Saba likes it as much though, poor thing. He also loves books. So amazing he will sit and act like he is reading for hours, really hours. He studies the books so closely. Yes he's a genius-okay I'm partial. HA HA

Okay, so I'm a little puzzled by the video camera. I am still trying to get videos from his second birthday. I am sure it is easy to do . . .I am working on it guys!! I did get another part for the camera, so we should be able to take tons of pictures of Mr. Photogenic. He will love that. I do have some older pics from May and June, so I included those below. There are a lot of close up shots in this group. We were trying to get a bunch of pictures at that time in regards to his cleft lip and nose repair healing status for his baby book. I will be adding more pictures once we get some new ones taken.

Well I continue to look for a job, if I had a nursing degree I could get paid for the care I am providing Caleb. Although I feel like I have a degree. Our nurse Amy, has said she is willing to work longer hours so I can go back to work. She is great - we will really have to work together to make a schedule work as she is still our only nurse. It is not like I really want to go back to work, as I am afraid how it will effect Caleb's development as we do a lot of therapy together every day and I do not want him to regress. I do not feel like it would be such a determent to his development in another six months or so, but we have a lot of bills to pay and the economy is not really helping Brian right now as he is a loan officer. I have looked at options of working from home, but they all seem like scams. I did find out today though if I get my first aid and CPR recertified I can get paid some money for the care that I provide Caleb that we are not getting through the nursing co. We are going to be looking into that - anything helps right?!?!?

Well all I am and so is Caleb very tired as we have a couple long weeks in a row. Take care everyone. Thanks for checking in. God bless you all!!

God Bless Caleb!!

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Updates, Updates, and more Updates

First off, CONGRATULATIONS DR. MARKERT AND HER TEAM! The piece that was done on Good Morning America and on Nightline on Dr. Markert and her team was amazing. I am so glad that she and her group are getting the attention that they so deserve! You all are amazing and God Bless you all!! To read the story if you didn't see it , please visit http://abcnews.go.com/Health/story?id=5379863&page=1. What a wonderful piece, congrats again! I really hope soon that our government realizes that if immune testing was done at birth it would save a lot of lives. Yes these tests will be expensive, but if the tests are not done at birth most of these kids aren't diagnosed with DiGeorge until 6 months old or later. By that time insurance companies are paying for multiple medicines to try to keep these kids healthy while they are waiting for the transplant (i.e. our hospital bills for Duke Hospital alone, not Children's, are over a million dollars). So, it seems obvious enough that the cost of testing at birth is worth it. This transplant still is not approved by the FDA either, so I will definitely be and advocate in any way I can for Dr. Markert and her team to help get the immune tests done at birth and to help get this transplant approve by the FDA.

Well I wanted to share a couple needed up dates on our little man, or should I say big now (34lbs.-no failure to thrive now).

We finally got our hands on the tetanus shot and our nurse will probably give it to Caleb on Sunday. Then hopefully we will get our first functional immune test within a month. NERVEWRACKING!!

We took Caleb to see Dr. Frangiskakis (our PCP for now who is in Children's Hospital in Pittsburgh). We have to see her instead of our PCP here in Wheeling that we picked when Caleb was first born as he has many doctors who are involved in his care (neurosurgery, neurology, craniofacial, allergy & immunology, endocrine, urology, ENT, orthopedics,the doctors at Duke, etc.) and doctor Frangiskakis acts as our quarterback in regards to all of his care. She is awesome!! We had to see her because 1. Caleb is gaining weight too quickly and 2. we are going to TRY to start increasing his feeds and decreasing his TPN (IV nutrition). She decided to adjust his lipids (his fat content in his TPN) so he isn't getting so much fat in his IV nutrition and hopefully his weight gain steadies out. We have also began the scary task of decreasing TPN and increasing his g-tube feeds. This is scary as last time we tried this he was life-flighted back to Children's due to several electrolyte imbalances. But we need to see if his immune system is kicking in enough to allow his gut to handle feeds. WE have increased his feeds to 5mls an hour so he is now up to 20 mls/hr (almost an ounce). We will try to increase his feeds by 5mls twice a week. This will involve constant labs (I drew more blood today and Brian took it to the hospital) so we can keep an eye on his labs and we also have to keep an eye on his physical state. So keep your fingers crossed and say prayers that the transition goes smoothly.

Today is also Caleb's monthly IVIG (supplemental immune system) infusion. I started it around 2:00 and it takes about four hours to infuse. This infusion consists of frequent vitals (blood pressure, temperature, oxygen saturations, respirations, etc.) So he gets annoyed with this infusion quickly as I am always bothering him for vitals. He's a trooper.

Caleb continues to roll on his tummy more and more and yes he is up on his knees. Amazing.

We have begun to do more work on sign language with Caleb as he signed 'more' for the first time last week. So we got flash cards and we work on a couple a day. It took awhile to get to 'more' as you have to bring both hands together to sign it and Caleb has texture aversions, which means he does not like touching things (his own hands, you touching his hands, etc.) So it was so exciting when he signed 'more' last week and clapped his hands more frequent. Some days his texture aversions are worse than others. He may not want to touch anything and other days it doesn't bother him so much, but it really never seems to be a non-existent issue. This is more a part of his CHARGE syndrome than his DiGeorge Syndrome.

He is still not eating, but we are working on it. I have decided to let Caleb explore foods on his own. Therefore, we put some different foods in front of him and let him explore. This will suffice for now, however, Brian and I believe we need to bring a therapist in for speech and oral stimulation therapy. We will just have to convey to the therapist that she needs to be the first case of the day for her, she will have to wear isolation gear as everyone else, and she can't come if she is sick.

His skin is looking okay, scalp is the worst. Dr. Markert suggested an ointment to put on his skin to help control the dryness. She said that in Caleb's case in may take awhile for his skin and his gut (digesting feeds) awhile to catch up with his immune system.

Well for now that seems like enough updates...even though there are many more!

Oh also, our camera is broken again and so we didn't get any pictures of Caleb's second birthday. However, I did use our video camera, however, I am not sure how to transfer the stuff of the tape so we can view it other than on the video camera (OOPS) I'm trying. So as soon as I can get any pictures I promise I will post.

God Bless you all!!

Thanks for checking in on our little man!!

God Bless Caleb!!

Nightline

Caleb's Dr., Dr. Markert will be on Nightline tonight talking about the transplant she does on kiddos like Caleb. ABC at 11:30.

God Bless Caleb!!

Jen found the story on Dr. Markert on GMA's website

Jen found the story on Dr. Markert on GMA's website.

Per Jen's email:
Hey Caleb Fans-

If you have checked Caleb's Blog, the story that I saw this morning on GMA is on the website now. If you go to the link below there is a section in the middle of the page that says "Videos" and the top section is for today. About 3 boxes down there is a small orange "+" sign in a box. Click on it and it will open up more stories. Scroll down a few until you see a story titled "One Doctor's Miracle Solution" with a picture of a beautiful little girl. There you will find the segment from this morning and get to see the woman who so diligently fought for and cared for our amazing Caleb!! It was kind of cool to finally be able to put a face to the name of the woman who, with her medical knowledge and Caleb's parent's undying love and devotion, turned this boy's life around!! It was so cool when I saw it this morning and even more cool the second time around when I watched it on the web when I wasn't trying to track down Sarah.&nb sp; Boy do I sometimes miss those days from college when I could just yell down the hall to her to change the channel when something cool was on, HA!! HA!! I believe I understood them to say that there would be more on this story tonight on Nightline on ABC. I have my DVR set just in case!! God Bless you all! God Bless Caleb!! God Bless Dr. Markert!!

http://abcnews.go.com/gma

"One Doctor's Miracle Solution"

In God's Love-
Jen

God Bless you all!!
God Bless Jen!!

God Bless Caleb!!

DiGeorge Highlighted on Good Morning America

Good Morning everyone. I just wanted to share some information. I just got a phone call from my best friend Jen, who said that Dr. Markert was highlighted this morning on Good Morning America. They talked about the transplant that the immunosuppressed kids get, like Caleb. Jen believes they may discuss it again tonight on Nightline for all who are interested.

Thanks Jen!

God Bless Caleb!!

Exciting Immune System Milestone

Well we have reached a milestone in Immune development.

There is a point with all of the transplant kiddos when Dr. Markert decides to try to give them a tetnis shot (remember these kids can't get immunizations or it will kill them). So she tries the tetnis and then they will do the first 'functional' immune test a month after the shot. I know confusing, what have all the other tests been?!? They have just tested to see if the immune cells are actually coming in. Which they have been but now they want to see how well they are working. But you have to see how they react to something, hence, the tetnis. This is so exciting I remember even before Caleb had his tranplant that they talked about this shot and it seemed so far away, and its here. The reason why they do the tetnis before any immunizations is because tetnis is a bacteria (and only part of the bacteria) where immunizations are live viruses. So we are trying to get a pharmacy around here to supply the tetnis and then it will be administered at home. I am drawing some blood work in the morning for Duke (not a complete immune study-but some labs she wants before the tetnis is given).

Also, more awesome news!! Caleb has sat up on his own twice now. He is so amazing. He did it right before his second birthday. What a tough guy! And yes I have to say it again, he is so darn cute.

I have to keep this short as little man is getting up from a nap and once again, no nurses today.

Birthday video soon to come too!!

God Bless you all!!

God Bless Caleb!!

Happy 2nd Birthday Caleb

Happy 2nd birthday Caleb!! We love you.
Pictures and video are soon to come.

God bless Caleb!!

Clinic on Thursday

Well the tentative plans are to head to clinic on Thursday so the Allergy and Immunology group can check Caleb's skin. Then the docs will decide if, when, and how to wean his cyclosporine (his immunosuppresion drug).

We have not heard anything regarding our next set of immune tests but by our calculations it should be soon. It seems as when we finally get the results from one test they should be drawing for the next set of lab work. It lately has been taking approximatley 4 weeks after the labs are drawn until we hear anything, which makes it very nervewracking for us.

Caleb went for another walk tonight and loved it. It is so nice to take him outside and to go up and down the street. Yes, it is nervewracking as we have to keep ourselves away from anybody, but we get to see some of our neighbors on their porches who are able to talk to Caleb while we our out on the sidewalk. However, today he didn't have his hearing aid in for the walk so I am not really sure he heard what our neighbors were saying to them, oops. But I think it is great for him to see different faces and feel the fresh air. He continues to walk while he holds our hands. So amazing and he is able to stand up while leaning on our coffee table. So awesome.

I can't believe he is going to be two. Wow!! My little boy is going to be two. I thank God for blessing us with such an amazing little boy and letting us be his parents. He has made me such a better person.

God Bless you all!!

God Bless Caleb!!

Clinic Appointment Rescheduled

Well we did not go to clinic today. As I was packing lastnight I went out to the car to clean the rain cover that we put on Caleb's stroller. We put this on the stroller to protect him from germs. However, it was in the trunk of our car and antifreeze had gotten all over it. YUCK! So I drove around lastnight and couldn't find one. So we thought it wasn't worth the risk of taking him to clinic without the cover. We ordered one online lastnight and hopefully it should be here sometime next week.

Caleb continues to hold saliva in his mouth we aren't sure why he is doing this. But loves to walk supported. He is so darn cute - hey I'm partial though!

Couple special prayers:
A good friend of the family passed away last week, Ed Shaw. His daugher, Lynn, has now lost both her mother and father within the past couple of months so please keep Lynn and both Ed and Dolores's families in your prayers.
My good friend Jenny (Jebbia) O'Dell's pastor was recently murdered and this has devestated her, her family (Darin and Keira), and the congregation. Please keep them all in your prayers as they deal with this senseless act.
A good friend of ours that we met at Duke sent me an email this morning stating the following: 'Most of you are aware of the young state trooper that was killed in Haywood County Tuesday. Trooper Shawn Blanton left behind a wife and son. His son, Tye, was born 7 weeks premature and has been in serious condition since his birth May 31st. I just spoke with my friend, Mark, who is also a NC State Trooper and worked with Shawn. He informed me that Tye was placed on life support this afternoon and is now very critical. The NC Highway Patrol is asking everyone they can possibly reach to please remember Shawn's son in your thoughts and prayers. If you feel led to do so, please pass this prayer request along. For the service, dedication and commitment that Shawn displayed and these folks show us every day, this I can do.'

So please keep all these families in your prayers.

God Bless you all!!

God Bless Caleb!!

Immune System

Hello all...

Update on the T-cells: Caleb has recently had two immune studies done. The first of the two showed that Caleb's T-cells continue to rise and we are at approximately 11%. This is very encouraging. However, in the last few weeks Caleb's skin has gotten increasingly drier and his stools were not normal. This led to another immune study. We still do not know the exact number,however, we do know, per Dr. Markert, that the nieve cells (the new T-cells) look good and they are not mine or the donor T-cells. They are cells that are going through his donated Thymus. Alright. We were weaning Caleb off of his immuno-suppression drugs, however, due to the skin and stool issues, we had to increase the dose and stop the wean. We are going to see the docs in Pittsburgh on Thursday and then they will report to Dr. Markert what they see visually.

Update on Oral skills: Well we recently got the go-ahead to start feeding again since his sickness with the pancreatitis. Not going so well. Not only will he not eat but he is now holding his saliva in his mouth. Not only is he doing this at meal-time but he is doing ot also when he is not eating. Not sure why he is doing this. We are going to stop in and see our friend Matt with craniofacial while we are up at clinic on Thursday.

Other updates: Well our little man is starting to like tummy-time more and within the last few days is trying to put his legs underneath him. In addition, he know will take steps while we hold his hands. Great progress for him!! We also have gotten enough courage to take him for walks in the neighborhood. Of course if anyone comes near him I go the other way (NO JOKE! :) )

We still do not have the nursing care promised to us when we left the hospital back in February. Very disappointing. We are also fighting for his disability checks. I have literally called our state senators and govenor to try to help us expedite the check delivery as they are now a month behind with this month's check. How wonderful. You have a disabled child, one parent can't work, bills to pay, and the state takes their time helping you. They now promise me it should be here in another 10 days. It is just shocking to me how hard you have to fight to get a special needs kid the help they deserve.

Okay enough of my ranting...just been a little stressed lately.

I will post Friday to let you all know how clinic went.

Love you all and God Bless!!

God Bless Caleb!!

Hospital Stay

Well we had to take Caleb to the hospital last Friday because he seemed to have a stomach ache. After they ran some tests, they found out Caleb had pancreatitis. One of your pancreatic enzymes, lipase, should be 200 and his was 10,000. So needless to say, he wasn't a happy camper. They kept him in the hospital until yesterday. His level is still high, 1800, but it is better than what it was. He isn't allowed anything by mouth or feeding tube until he feels better. Thanks to Aunt Jen for sending updates and thanks to all for your prayers.
Also, we still haven't heard anything regarding the immune tests so when we hear about that we will post too.
God bless you all!!
God bless Caleb!!

Advice Needed

Hello all....Sorry for the delay in posts.

So Caleb is continuing to recover from his cleft lip & nose surgery. We have to massage his lip so it desensitizes and hopefully prevents it from scaring.

The reason why we are posting tonight is to try to get as much advice as possible. As most of you know, Caleb spent the first year and a half of his life in the hospital. Therefore, he was in a crib and is behind in his physical development. Caleb is almost two years old and still does not sit up on his own, crawl, drink, or eat baby foods. We know that he is delayed due to living in the hospital and this can effect the sitting (however, he can sit up unsupported for hours). He just can't get himself up. He also has CHARGE in addition to DiGeorge (the immunodeficiency) and we have read that CHARGE delays/effects eating habits. He ate completely by some type of tube (NG, Mic-key button, etc.) until about two months ago when we were given the go ahead to try baby foods. He still gets all of his nutrition via IV and we are doing continuous feeds through his Mic-key to keep his LFT levels down (Liver function levels - keeping his gut from going to sleep). We try to feed him and he will try to prevent anything from going in his mouth. Then, once you get a drink or food in his mouth he will not swallow. We know he has an oral aversion, and know there is not a quick fix. Here is our dilema...we cannot bring early intervention yet into the home, as it is not worth the risk of what we could be exposing Caleb to (i.e. cold, flu, etc.), so we are turning to our fellow bloggers for any advice on therapy that may have worked for them in any of these areas. Please post any ideas that you may have, we would definitely appreciate it.

Clinic Update, Immune Bloodwork, Pics, and Prayers

Hello all. . . we are trying to get more updates on the blog more frequent. Brian got over his sickness so it is me and him again working as a team again to take care of our little man along with a nurse that comes for 8 hours 5 days a week (however-we still should have nursing care more often). But Brian and I do pretty well as long as both of us are healthy.

So Caleb went to cleft-craniofacial clinic last week for a checkup. Unfortunately, do to us being stuck in traffic for a very long time we missed Dr. Losee, but another surgeon saw him and said the healing process looks good. Just keep up the care we are doing. We also talked about speech therapy and audiology therapy with our friend Matt at cleft-craniofacial and Caleb will probably need some therapy but we will have to wait until we get more immune function before Brian and I feel comfortable brining therapists into the home.

Which brings me on to the next topic. We did have blood drawn for immune studies. So pray hard that his T-cells (Immune System) is continuing to grow. As soon as we know anything we will post.

As promised pics.

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On a final note, please keep our little friend Jacob Rice (Buddy) and his parents, Nick and Jessica in your prayers. As Jessica's mom said: 'little Buddy hatched his wings and flew to heaven to be with God' on May 9th. We met this wonderful family during our stay at Duke. Please keep them in your prayers. We love you all!!

God Bless you all!!

God Bless Caleb!!

As Promised-Pictures!!

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Cleft Surgery is Done

Hello all...

The cleft surgery was last week and so far so good. It was about a seven hour surgery. Dr. Losee was not happy with the nose but was happy with the lip. He is a bit of a perfectionist...we love him and his group. We knew that this would not be the optimal repair as Caleb couldn't wear his mouthpiece after he coded at Duke and was on the ventilator for so long. He looks cute and very different!! We were actually only in the hospital for three days which is very odd for us. Usually we are there for the long stays. Hopefully those long stays will become a thing of the past. So he is still pretty swollen so as soon as the swelling goes down along with the black eyes I will post some pics.

So we still only have 1 nurse for five days a week, she is awesome. Not to happy with the nursing company still as we are qualified for 16 hours of nursing care a day for 7 days a week and they have had 3 months now to staff this case. We have had two nurses not even show up for their shift, one nurse who did not tell the truth about her qualifications, and another nurse who made a med error. So needless to say I would not recommend this nursing company. I would totally drop them and switch to another company but I don't want Caleb to lose the nurse he has now.

There are many of you who continually send wipes, diapers, etc. to our home. I wanted to give a little tidbit of information as I know many moms who read this are big into which companies help those who have children with special needs. I had posted that a certain company was going to donate hand sanitizer to Caleb. . .well they pulled there donation off the table. However, I did find another company that is willing to send something. If you ever need hand sanitizer and can buy Avant please do so. They were very willing to help out. Yes it may be a one time shipment but they still sent something, which is more than I can say for other companies. It is very disappointing when you call many well-known companies who would probably not be financially burdened by a donation that are not willing to donate to such a case. It seems to me, from our experience (i.e. Windcore, Panhandle Restoration and Cleaning, Jamison Carpeting, Cavi-Wipes, and you all) that the littler companies and individuals, who will bear a financial burden, are more willing to donate. Excuse my rant, but it just seems like something is wrong with that picture.

So it was a year ago we were arriving in Durham, NC to get Caleb a thymus transplant. It was not too long after we got there, May 10th 2007, that Caleb got sick and coded and was placed in the PICU on ventilator. I remember mothers day last year. . .my first mothers day and I was praying that Caleb would make it and we would have many more mothers days together. I remember all the other moms in the PICU waiting room that were spending their first mothers day the same way I was. I think of you all and your little ones often and you continue to be in my prayers. May this mothers day be a better one for us all!

In case I cannot get another opportunity to get back on in awhile. . . I wish everyone a Happy Mothers Day.

God Bless you all!!

God Bless Caleb!!

Immune Testing Bloodwork

Hello all.....READY FOR THE NEWS.....

CALEB HAS 6% T CELLS!!!

We are absolutely ecstatic here in the Hlebiczki household!!! wooohooo yeehawww

The percentage definitely has to increase but we finally have something!!! WOW!

I am crying typing this...I am still very nervous as I am every day as it is very scary to try to keep him from getting sick...but to know that there is something there is just amazing. I was so fortunate to talk to Dr. Markert today and she said she was smiling when the bloodwork came back and she actually saw T cells in his blood. HOW AWESOME!!! I could hear her excitement over the phone and new the news must have been good. I cannot thank that woman and her group enough for doing this transplant for Caleb. She and her group are truly amazing people. Thank you all and God Bless you!!

You all are amazing too....we continually get wipes, diaper genie refills, diapers,etc. on our porch daily. WE have been blessed to have you all in our lives. I cannot wait until the day when myself, Brian, and Caleb can personally thank you all face-to-face. God Bless you all. You are our angels. We love you and thank you.

God Bless you all!!

God Bless Caleb and his T cells!!

Liver seems to be producing Protein

So the liver seems to be producing protein...so where is he losing the protein is the question.

Well . . . I did not get to post about something they found before we left Duke. About two weeks before we left Duke they found a questionable mass in Caleb's chest. They tested for different types of Cancer and do not believe it is a cancerous type of mass. They are wondering if it is a lymph fluid build up. Possibly due to a lymph vessel getting nicked during one of his surgeries and leaking out into his body. So. . . when we left Duke they suggested we keep an eye on this mass to see what happens. Well now that he is losing protein, Dr. Markert is wondering if he is dumping the protein into his mass. Dr. Markert suggested that they do another x-ray to see what his mass looks like. I haven't heard back from any of the docs at Pittsburgh yet so. . . we will see. His Albumin gets checked again on Monday so we will so how that level is. I hope and pray that it stabilizes and starts going back up.

God Bless you all!!

God Bless Caleb!!

P.S. I will be adding pictures to this post hopefully later on today.

Albumin level is low

So his Albumin level, protein level, is low. This level continues to drop and we are not sure where he is losing his protein. So far it doesn't seem to be that he is losing it in his urine or stool so the last thing to check is to see if his liver is making enough protein. I hope and pray that it is and that maybe we just have to re-run the urine and stool tests and find something there. We should get the results regarding the liver sometime this afternoon. A big concern with this level dropping is that he could third-space (send the fluid that should be going to his vessels out to his tissues, lungs, etc.). So we are keeping a close eye on him making sure he doesn't start to swell. I have been talking to Dr. Markert (the Dr. that did his tranplant-love that woman) to see what she thinks. We are communicating via email regarding his labs so maybe she will be able to provide some insight also.

God Bless you all!!

God Bless Caleb!!

New part for the Camera on its way

Hey all just a quick update. I found out what is wrong with the camera and a new part is in the mail. YEAH it is so exciting...I will be inundating you all with pictures very soon!! You will be shocked.

No UTI but some abnormal labs

So we are still trying to get settled in here at home. We finally had Christmas this past weekend. It was so nice. Caleb got more toys-imagine that. His grandparents and all his aunts and uncles love to spoil him. Thanks everyone.

I wish I could send thank you cards out to all of you for your generous gifts, cards, emails, etc. I am just so very busy and that is no excuse. Thank you also to all of our friends at Xerox (where Aunt Jen works). They sent Caleb so many wonderful gifts: clothes, diapers, stuff for his crib, etc. That we really needed! Thank you all. It amazes me how many wonderful people we have been blessed by that have come into our lives in the past 18 months. Thank you all.

Caleb did not have a UTI, but is having some abnormal labs. Some of his levels are not within the norm and hopefully we can get some of them stabilized with his new TPN. We will have to wait and see. We have clinic appointments next week so maybe we will learn more then. They are also planning on doing his next set of lab work for Duke while we are there so PRAY HARD FOR TCELLS.

On to nursing care. I think we were spoiled by the wonderful nurses at Duke and Childrens. We do have 1 nurse, who comes 8 hours a day monday through friday, and she is very good. However, I hang his IV medicines at night, do his dressing changes, change his cap on his IV etc. It has been very hectic. The company who does his IV meds is pretty much worthless, they keep messing up his drugs and if it wasn't for Brian and I double checking what they send we could have had some big issues. We do qualify for 16 hours a day of nursing care, but at this time we are only getting 8 hours a day Monday through Friday. So needless to say, I have not been really impressed with that so far either. But Brian and I have gotten in to a routine and have been working hard to get a routine down together. It is a shame what we were lead to believe didn't happen. But what can you do-

Well Caleb is only down for a nap for a short time and I have to get his IV meds out of the frig, get some laundry done, and do some chores around the house.

Special prayers:
Friends of the family lost their baby girl Victoria this past weekend. Please keep the parents, the brothers, and the extended family in your prayers.
Another friend of the family's son was in a car accident a couple months ago and was paralyzed. He is slowly regaining some movement in his limbs. Please pray for his family that he will continue to make progress in his rehabilitation.

We love you all and thank you for continuing to check on our little man.

God Bless you all!!

God Bless Caleb!!

A Much Needed Update

Hello all....so sorry for the delay. . . we have been very busy to say the least.

Well we arrived back in Pittsburgh on November 27th. Caleb did have his palate repaired and the recovery was difficult. While he was recovering from that surgery the poor guy tore his Nissan wrap (the tightening of the tummy to help with his reflux). So needless to say we had to have the wrap redone. Then we finally went home after New Years-thanks to all who send cookies, presents, etc. to us while we were in the hospital for the holidays, once again you all are awesome.

We were home for about two days, 40 hours, and Caleb got really sick and was life-flighted to Children's he was hypoglycemic (low sugar), hypovolemic (low fluid volume), and septic (had an infection. He was fluid resuscitated twice and almost went into cardiac arrest he spent two weeks in the PICU and step down ICU. He fought back and recovered well and was able to come back home. He is now back on TPN (IV nutrition) and low volume feeds (just enough to keep his gut active). I have learned how to take care of the IV line-very nervewracking. We have visited the ER three times since we have been home in the last week and a half. Brian and I woke up this morning and we think he now has a UTI so I just put a urine specimen bag on him and we will send that to the hospital to see what that shows--poor guy.

So needless to say I am sure you can see why I haven't updated in awhile. I miss you all so much and cannot thank you enough for all the prayers.

Now that I hope we are somewhat settled (knock on wood) I will try to update more regularly.

God Bless you all!!

God Bless Caleb!!

Hi everyone, this is Jen Straub, Sarah's friend. Sarah has asked me to post a quick blog to bring everyone up to speed because she is unable to get a connection at the hospital (they are behind double doors) and she is not able to leave the room.

I am honored to be able to share some wonderful news with everyone!! They just got the results of the Biopsy Caleb had at Duke in NC and he is producing T-Cells!!!!! They have not yet left his Thymus, but in time they should get trained and go out into his body to fight infection. Dr. Markert had told them that it would not be uncommon to not be able to see any T-Cells at this early stage, but not this special boy!! He is ahead of the pack!! This is fabulous news and means, so far, the fight for the transplant was worth every ounce of effort.

Caleb also had his cleft palette repaired last Wednesday. He is recovering well, but they have to keep everything out of his mouth for 3 weeks, and with a teething toddler, well you know. His lip adhesion surgery is scheduled for January 3rd. They will basically fuse the two parts of his lip together to help create more tissue for future surgeries.

They are also working to get Caleb off of the TPN drug (nutrition drug) before he heads home. Some of his liver levels were still off so they are monitoring that. At this point, if they are able to regulate those levels, the Drs are hopeful that Sarah and Caleb will be able to make their journey home on Friday!!! That is right. There is a strong likelihood that they will be in the comfort of their own home Friday!! Now we must continue our prayers because you can't count on it until it happens, but it would surely be wonderful for them all!!!

Once they are home they will still have to stay in isolation and Sarah and Brian will not be able to have any direct contact with anyone. They will have to stay in very isolated environments and will have to be protective of anything entering the home. This includes sterilizing everything, clothes included, before they enter the door. But it will be good to have them together and in the comfort of their own home instead of stuck in one room in the hospital without Brian being able to be with them everyday!!

The last comment Sarah wanted me to share is a request for prayers for the family of Samantha Welch. She is an amazing 17-year old girl who battled AML and just recently (December 1st I believe) lost her battle. She is now pain-free and in God's grace I am sure, but please pray for her parents, Eugene and Faith, two special people who touched Sarah and her mom's (Linda) hearts as they grieve and remember the joy their daughter brought to those who met her. God Bless you all!!

God Bless all of you!!!!!

For anyone looking for ways to contact Sarah directly, feel free to send an email to me and I will be happy to help as Sarah gets transitioned and doesn't have a strong connection to the internet. My email is jstrauby@comcast.net.

God Bless all of you and your families during this magical season. I know Caleb has certainly blessed us and helped to remind me and my family of what the true meaning of this season is. May you and yours be blessed as well.

God Bless Caleb and God Bless his parents for their relentless fight for their boy. I have never known more loving and determined people and I am even more blessed to be able to call them friends. I thank them for allowing me to share in their story and I thank all of you for continuing to pray for Caleb and to follow his journey. You have all helped so much by telling Caleb's story and helping to find companies generous enough to donate things to this special family. The latest was the donation to cover the costs of Caleb's hearing aids until he turns 18!! This is from a company that wants to remain anonymous, but was through the WTOV9 Season of Miracles program. Thank you WTOV9!!!! There are so many different ways to help this special family and I thank all of you on behalf of Sarah and Brian for all that you have done and all the kindness and generosity you have shown them. I know that when they can they will spend months making up with all the hugs they wish they could give out now!!

God Bless!! Merry Christmas!!! Happy Holidays!!!

Biopsy is Done

Well all again sorry for the delay...we are still waiting on our fixed computer.

Caleb had his biopsy this past Friday. We won't know anything for at least a week. We are praying hard that the Thymus has grafted and they see some T-cell function. They have also mentioned that we MAY be heading back to Pittsburgh Children's around the 26th. However, this is only if Caleb stays healthy. So we are praying hard that he continues to stay healthy and infections stay away. We are hoping once we get back to Pittsburgh we can get Caleb home shortly after that to get him out of the hospital and decrease the chances of him being exposed to something. He has learned to wave and blow kisses-I have to say it is too cute!! He amazes us more and more and what a flirt.

My brother Ben worked miracles and got a company, Windcor, to donate windows for our home. Thank you so much to Windcor and Ben. Our friends and family worked tireously all day yesterday and got them all in for us. Thanks to Ben, Dad, Chad, Gary, Shani, Justin, Jimmy, Russ, Brian and more on getting those in for us. We have also found out that Pandhandle Restoration and Cleaning is going to clean our house for us thoroughly with the full gear for us at no charge. In addition, Sean Jamison, is going to put new flooring in Caleb's room at no charge. Thank you to all of you for such unbelievable generosity to our family. Again, we will not be able to thank you all enough.

Well all, I will let you know what is going on as soon as we know.

A couple prayers for a couple people who I know are going through some rough times right now: Josephine Wilson-who fell last week and broke her ankle and finger. I love you gram; The Welch family whose daughter is fighting AML (typer of cancer); Keep fighting Sam. Christi's family- who lost their house in the San Diego fires. I love you all and are praying for you all.

God Bless everyone!!

God Bless Caleb!!

Sorry for the Delay

Hi all, Sorry for the delay in updates. Our computer broke so it is hard to get to the Ronald McDonald Room to use the computer.

Caleb is playing tons. We have a couple issues. His LFTs, liver function tests, are up so they are doing some tests to see what is causing it. Hopefully, if anything it is his TPN. We are working on his feeds to hopefully get him up to a high level. Slowly but surely we are working towards it. His biopsy on his Thymus can't even happen until EARLIEST November 12th. So hopefully we continue to keep Caleb healthy. As soon as we get our computer back I will post some pics.

I will update more soon.

God Bless everyone.

God Bless Caleb!!

Updates

Well all here are a couple updates. . .

Feeding
Caleb is still having issues regarding gagging after getting a feed because he is trying to figure out how to burp, but can't due to the Nissan wrap. The docs said it can take up to 4 months for his stomach to get used to the wrap. They are doing a couple 'rule-out' tests (shunt series x-rays, GI swallow, Gastric Emptying Study) to make sure nothing else is causing the gagging. Once I vent the Mic-key he gets rid of some gas and feels much better. It is just tough to see him so uncomfortable. AND yes....Caleb got his Mic-key button (replaces the G-tube). The Mic-key is so much better as it is a lot less cumbersome than the G-tube and doesn't tug on his belly as much. It is also a lot easier to dress the little one.

Teeth
Caleb has two teeth!! His bottom two front teeth came in and they are so cute. I think he may be trying to cut more teeth as his body temp is a little warmer (hopefully it is nothing else) than normal.

UTI
Caleb has a UTI so he is on some tough IV antibiotics to hopefully get rid of the infection.

Hearing Aid
Caleb has been wearing his hearing aid more, which he doesn't like it when I put it in but is happy after it is in. We had to get a new mold done here about a month ago, because he has grown. However, he wasn't able to wear it a lot lately due to a lot of stuff going on here. The hearing aid seems to be whistling a lot so I am going to ask if Audiology can come and look at it and make sure it fits okay...doesn't seem like it sits down far enough into his ear canal.

Development
I ordered a play pen for Caleb online. We are hoping this will help him with crawling and more developmental milestones as it is hard and dangerous to do so in a metal crib. In addition, the floors here are not the cleanest so I am not willing to put him on the floor. Hopefully, he will like the play pen!

Well there are more updates but my man is waking up from a nap and wants to play. I will write more later.

God Bless you all!!

God Bless Caleb!!

Pictures before and After Transplant

Well the poor guy is trying to cut a whole bunch of teeth at once right now...Man oh man. But despite the teeth, he entertains. Everyone who has come in today says how good he looks. Our man has some big bruises on his legs from the Transplant but he seems to be in good spirits. They are trying to feed him again through his G-tube. We will have to wait and see how that works, as he was retching a lot when we tried feeds before his transplant. Retching (gagging) is the last thing you want right now as it would tear his Nissan wrap out and that would be bad as he could reflux again if the wrap comes out. So we have started at a VERY small rate, 2ml/hour (approximately 13cc less than a half ounce)-small huh?!?

Brian, Dad, Jean, and Ron left today to go back to WV. We already miss them so much. They were here for a week and it was very nice to have them here. It is so hard to be away from Brian for so long. We are trying to find a way to get him back down here in approximately two weeks. I love you babe and miss you very much already.

We know we will be here for at least a couple months, but there is the concern of what needs to be done to the house before we could bring Caleb home. Man the list of things that need to be done is overwhelming to say the least. The biggest priority is getting it 'clean' in every way to have it be a safe environment for Caleb. We are looking into ripping up his carpet in his room to have a more allergen free type of flooring, new windows in the house (as ours are very old and most do not have storm windows anymore), and a very thorough clean (especially-the basement and duct work) as we were flooded a couple years ago and I want to make sure no remnants are left. The list is overwhelming and with me not working and the market in regards to Brian's job (loan officer) isn't at its best right now....I will be trying to talk to several companies to see if they can help us out with this items and more as I am sure the list will grow. If anyone has any suggestions please let me know. I had considered writing Extreme Home Makeover in the past, but not sure if there is time and if honestly we would get picked. I guess it is something to think about and how would you know if you don't try. But seriously, if anyone has any suggestions on who I could contact please let me know. I will be writing Lysol later today, as we use about 120 of their wipes in two days...CRAZY huh. Who knows if they would donate some, but it is worth a shot right?!?!?

Well again, I wanted to give you all a short update and let you know what is going on here. I have included some pictures below too and I should have some videos later in the week!! Enjoy.

God Bless Caleb!!

Photo and video editing at www.OneTrueMedia.com

Yeahhhhhhhhhhhhhh Thymus

Thank God we have a Thymus and it is in Caleb's legs!! Wooo hooo.

He went to the PICU after surgery and was getting ready to go to the floor when he started having some pain management issues. They got that under control and he was able to come back to the floor the next morning. The bonus to it all was the nurses on Caleb's floor fought so hard to keep Caleb's room for us (it is one of three big rooms) so we wouldn't have to moved to a small room. They are a good group of girls here, just like the nurses in Pittsburgh.

He has been playing like crazy today and is resting well right now. He was a little fussy earlier today, but we attribute that to teething and the soreness in his little legs. Dr. Markert let us know that the Thymus was a really good match. Now we have to pray for T cell function. We should know how that is in about five months. So, we still have to watch him pretty closely and keep him healthy for at least the five months while we wait to see if the transplant worked.

I will write more later...but I wanted to give a short update as I know a lot of you are anxiously awaiting an update.

Also, a couple of prayers. Our little buddy PJ (one of Caleb's Duke PICU buddies) was re-admitted and is intibated again. He is not able to keep his oxygen levels up, so, his family could use some extra prayers. Please visit his website, the link is on the left side of this screen (PJAngelChild). Also, we would like to welcome home baby Zoe. Our friends John and Lee Roberts just got home from Vietnam with their baby girl Zoe. Pleas visit their website also and see the adorable pictures of little Zoe. The link to her website is at the left also.

I also want to thank all of you for your continual comments and prayers for our family. You all mean so much to us!! We are blessed to have each and every one of you in our lives. Thank you so much, from the bottom of our hearts. God Bless you all, you are truly amazing.

God Bless Caleb!!

Surgery is Started

Well, Caleb went into surgery earlier than planned. The first case cancelled so Caleb went in at 8:45 and they are planning on a two hour surgery. They have also planned for him to go to the PICU after the surgery to closely monitor him due to his extabation issues and pain. As soon as we hear any more I will update. Thank you all for your prayers. We love you all. We are so happy that this day has come. We pray that he recovers well and that this thymus works and gives him a full-functioning immune system.

Thank you all again. I will update as soon as I can.

God Bless Caleb!!

Transplant at 10:00 a.m.

Hey all!!! Caleb's transplant is scheduled for 10:00 a.m. tomorrow morning. Just wanted to let you all know when he was suppossed to go in. They will do some final tests tomorrow morning on the Thymus before the transplant!!! PRAY HARD!!!

Thanks to all!!

God Bless Caleb!!

Third Dose of ATG

First off, I have to appologize for the delay in updates. I have to admit I was a little more emotionally distraught after the cancellation of the transplant two weeks ago than I let on in my last post. BUT. . . Caleb has been in the ICU for the past couple days getting ATG (the medicine infusion they give before transplant). He is getting his last infusion tonight and we have a potential transplant date on WEDNESDAY!!! So PLEASE say TONS of prayers. I will post more with pics later, but we are very tired and just got back to the hotel and will have a couple long days in front of us.

Again, thank you all of you for your phone calls, cards, emails, prayers, etc. You all are a wonderful support system for our family. Again, I appologize for the delay in updates. But hopefully things will continue to 'stay the course'.

God bless you all.

God Bless Caleb!!

Still Waiting For a Thymus

Sorry all for the delay. We have been busy moving rooms, as wonderful Aunt Jen said in the comments section (she is so sweet to us). Caleb ended up having his G-tube put in as well as a Nissan wrap (wrapped his stomach to prevent severe reflux), repair of his broviac tube (his central IV tube that split the morning of the surgery), and to remove his gall bladder (as it was causing problems since he was initially in the PICU). He is still healing from that surgery and that was about two weeks ago. His G-tube is still leaking, YUCK!!! But, we are trying to keep it clean and infection free. He is now up to 18 mls an hour on feeds, I think the goal is 48 mls. They are only increasing it 2 mls a day, if all is okay, to not overwhelm his GI tract.

Well, on to the Thymus. Once again we were VERY close to a Thymus. We thought number 8 was it. Caleb was even in the PICU getting his first of three ATG infusions (the infusion they get pre-transplant to prevent their body from rejecting the Thymus). He was actually scheduled for transplant for this Friday. Brian was here also and was planning on staying through Sunday. However, one of the last tests was on the virge of passing and the docs decided that night that they weren't comfortable with the results. The transplant was cancelled on Sunday night. Brian had to fly back early to get back to work, so he can come back when they find a healthier Thymus. Needless to say, we were definitely upset, but didn't want to take that risk. We were close again, but we are praying for a healthy Thymus to come soon. We are back out on the floor waiting for a Thymus. We are screening Thymus 10 with a possible 11 and 12 later this week. Crazy huh?!?! Emotionally we are better, just nervous as the wait for a Thymus keeps get longer and longer.

Well on a wonderful side note, Caleb rolled over onto his tummy yesterday for the first time ever, despite having the G-tube. Of course, there has been some developmental delay due to being in a hospital for about 12 months, but Caleb continues to strive developmentally. THe PT and OT therapists are so happy with thes progress that he has made despite all his surgeries he has had here. He is such a sweetheart and an amazing little boy.

Again all, sorry for the delay it has been very busy with the moving back and forth to the PICU for different surgeries and then to have the last upset regarding the Thymus. They will find him one.

Please continue to keep Caleb in your prayers and pray they find him a Thymus!! We love and miss you all!!

God Bless Caleb!!

Levels are Better

So Caleb's levels are better. We are hoping they will stay that way. He got more blood today, so that will help his hemoglobin level. I just really pray that they can get a GREAT Thymus this week!!

So . . . I have to admit I have been a bit emotional lately. It is so hard to see your child go through all of this. It is also hard to be away from home and to be away from Brian. By no means do I want to go home until Caleb is healthy, but I am homesick. I miss my husband, dog, dad, brothers and their families, friends, and the 'sense and feeling' of being home. I know it will come soon. I pray for the day Caleb, Brian, and I will walk in the back door and I know in the back of my mind that Caleb's T-cells are starting to function. That he can sleep in his own room that he has barely spent any time in. That we can all wake up in the morning, have breakfast, and have a 'normal' day of hanging out in the house. Just the thought of all that makes me tear up.

I appreciate everyone's continual support and prayers for our family. Thank you all so much. God Bless you all.

God Bless Caleb!!

Happy Birthday Brian

Happy 32nd Birthday Brian. We love you soooooo much and miss you unbelievably. We hope you have a blast today. Caleb wanted me to tell you that he is glad you like the balloons and that he loves you very much!! I love you babe!!

As far as Caleb's labs, they improved a little bit in regards to his electrolytes. However, his DIC panel (clotting factors) have dropped and they are not sure why. They gave him some FFP (fresh frozen plasma) to help him with the clotting factors and are starting him back on Vitamin K to help him with this also. Again, they are puzzled as to why his labs look like they do.

God Bless Caleb!!

It's not Teething-Prayers Needed

So the docs just came in and Caleb's labs for