Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Tuesday, June 24, 2008

Immune System

Hello all...

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

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

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

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

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

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

Love you all and God Bless!!

God Bless Caleb!!


Jen Straub said...

We are all still praying hard. Hope someone will be able to share some great tips with you to help you help Caleb with his eating! We love you and miss you all so much!! We will continue to pray that Caleb's immune system continues to produce T-Cells and that you can soon be less worried about exposure and that his skin and stools will improve. We so loved seeing his beautiful smiling face and can't wait to do it again!! Love you all!!

God Bless Caleb!!

Aunt Jen

Chelsea said...

Hey, Caleb, Sarah, Brian, and Grandma!! I am so sorry that I have not been keeping up with you like I have in the past... my life has been kind of crazy recently (the kind of life that you were used to when Caleb was at CHP, basically). It is SO WONDERFUL to see your family in your home, FINALLY!! He is getting so big and you all look so happy! So, today is a big day, I pray that it all goes well for you. I know you are busy, I would love to catch up, I will keep checking his blog!! You do such a great job of updating everyone with it! Hopefully I'll talk to you soon, but I of course do not want you to be at CHP for anything but outpatient appointments!

God Bless you all,

Chelsea (Carnahan) Kearns