Bottoms Up!

So Caleb has been doing great with drinking. He has been drinking around 30 oz of fluids a day! CRAZY huh?!? We are so excited! He is doing so well that we have stopped all feeds by his feeding tube at night. Our little boy is getting all his fluid intake right now by mouth! We are praying hard this continues! We would love to get his mic-key button out! The next step will be to figure out what to do with his meds as he still gets all of those via g-tube, and some are through the night too! So this will be tricky, but he can do it! We have faith!

Also another tidbit of great news...he is kicking that nasty cold on his own! Once again he did better with the cold than I did! He is closer to getting rid of it than I am and he required no medicines to help! WOOOOOHOOO Caleb! I am so proud of my lil' man! He is so awesome!

We have a busy month coming up of clinic appointments coming up so I will update everyone on the appointments as they happen.

We also may potentially be going to Duke in the middle of March. We were contacted by wonderful Dr. Markert (the amazing Dr. that did his Thymus Transplant for Caleb's immune system) and they have received grant money to do more research work in regards to the Thymus Transplant. This phase of research would be to see if and when the body stops making T-cells after Transplant. It is a non-evasive phase of research. It consists of a 24 hr admission at Duke where Caleb will drink certain amounts of 'heavy' water (certain water that bonds to t-cells) every couple of hours. Then he will get doses of this water twice a day at home for the next month or so. Then blood work will be performed and analyzed. When Dr. Markert called me to ask if we will be interested there was not hesitation in my response once I heard it was non-evasive. She is an amazing woman, who has saved numerous kids, and how can you say no to such a remarkable woman. We love you Dr. Markert. I will be going over the consent with Dr. Markerts wonderful head RN, Stephanie on Monday. So I will update on this too once we learn more!

Also, Bri and I went to the high risk doctor yesterday that we saw when we were pregnant with Caleb. Right away on ultrasound they noticed the smaller of the twins didn't make it. I wondered if it was going to make it as in previous ultrasounds it looks so tiny compared to the other. Dr. Thomas was great! He sat in the room with us and looked at everything on the other baby: the brain, heart, spine, face, fingers, arms, ears, eyes, nose, lips, etc. And so far everything looks great! They did ask us if we wanted to know the sex of the baby...We wanted to keep it a surprise when pregnant with Caleb, but with all the complications we found out Caleb was a boy. With this pregnancy, we felt like we have had enough 'surprises' in our life. We also were worried that if it was a girl and we didn't find out the sex we would be dressing her in a lot of boy clothes! So they were able to look at the sex plate and let us know that.......IT's A GIRL! Caleb is going to have a little sister. Personally, that is a great scenario as I had two older brothers looking over me when I grew up (and they still do!) and now Caleb can watch over his lil' sister!

God Bless you all!!

God Bless Caleb!!

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!!