Updates, Updates, and more Updates

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

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

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

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

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

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

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

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

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

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

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

God Bless you all!!

Thanks for checking in on our little man!!

God Bless Caleb!!