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!

Make video montages at www.OneTrueMedia.com

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!!