Well we did not go to clinic today. As I was packing lastnight I went out to the car to clean the rain cover that we put on Caleb's stroller. We put this on the stroller to protect him from germs. However, it was in the trunk of our car and antifreeze had gotten all over it. YUCK! So I drove around lastnight and couldn't find one. So we thought it wasn't worth the risk of taking him to clinic without the cover. We ordered one online lastnight and hopefully it should be here sometime next week.
Caleb continues to hold saliva in his mouth we aren't sure why he is doing this. But loves to walk supported. He is so darn cute - hey I'm partial though!
Couple special prayers:
A good friend of the family passed away last week, Ed Shaw. His daugher, Lynn, has now lost both her mother and father within the past couple of months so please keep Lynn and both Ed and Dolores's families in your prayers.
My good friend Jenny (Jebbia) O'Dell's pastor was recently murdered and this has devestated her, her family (Darin and Keira), and the congregation. Please keep them all in your prayers as they deal with this senseless act.
A good friend of ours that we met at Duke sent me an email this morning stating the following: 'Most of you are aware of the young state trooper that was killed in Haywood County Tuesday. Trooper Shawn Blanton left behind a wife and son. His son, Tye, was born 7 weeks premature and has been in serious condition since his birth May 31st. I just spoke with my friend, Mark, who is also a NC State Trooper and worked with Shawn. He informed me that Tye was placed on life support this afternoon and is now very critical. The NC Highway Patrol is asking everyone they can possibly reach to please remember Shawn's son in your thoughts and prayers. If you feel led to do so, please pass this prayer request along. For the service, dedication and commitment that Shawn displayed and these folks show us every day, this I can do.'
So please keep all these families in your prayers.
God Bless you all!!
God Bless Caleb!!
Thursday, June 26, 2008
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!!
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!!
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