Friday, October 5, 2012

Trying to stay focused on the positive

So it has been an incredibly busy and stressful week since we have been home. I have anxiously been checking on line for the results of Preston's blood work in relation to his immune system. It finally came in last night. I don't know all of the particulars about where we go from here, as we haven't actually spoken with our immunologist yet. We followed up with GI yesterday and his biopsies looked good, we are going to start weaning him off medications and prayerfully he will do well. He has also gained a WHOLE POUND in the week we have been home!!! 20lb 9oz I don't remember doing a Cell flow cytometry report with Sam, so unfortunately I don't know if Sam's was the same or not. But essentialy Preston has low specific T cells, and B cells, and NK cells. When I called our PCP last night she explained that the specific cells that he has that are low, are the ones that have to do with viral infections, which really makes sense, since most of his illnesses, although he has been pretty sick with them have been viral. When he gets sick he seems to be sick for quite a while each time, and that would make sense being that he has low numbers of cells to fight of viral infections. He is different from Sam in this aspect because Sam as an infant had lots of illnesses that were bacterial. And then I also found out that his body did not create antibodies to all the vaccines that he has been given. He had little to no response to them. I know Sam had this testing done, and his numbers were low, but I believe they were higher than Preston's. So I am just trying to wrap my brain around this latest information. Again I haven't spoken with our immunologist yet, but I am suspecting that we may be looking at IVIG or something along that line, which then leads to another issue, IV access! That is something that we just struggled with at MGH and to think that we will have to do it over and over again is rough.... But for now I am focusing on the fact that God HAS ALWAYS brought us through all that is before us. I am standing in Him today, knowing that His strength is perfect, and that He is in control:-) Preston already knows that.....
Sam has also had a follow up with his GI doctor. He was very happy with how Sam is doing. We are actually going to start a dairy trial. Sam is so happy about it. It is going to be a long attempt, but in about 4-6wks we may allow him to have a small amount of milk to drink, but first we will be doing products that have milk and then are baked for two weeks, and then we will move onto yogurt and cheese for two weeks, and then on to milk! Sam weighed 45.8 lbs and was 46 inches tall! He is growing so big. And man oh man is it hard to get a good picture of him these days. This was the best I could get with like 20 attempts. He is doing fabulously in first grade and I am so proud of him!
And my sweet Sophia is doing very well. She has adjusted well to her new school and is making lots of new friends. She had a little bit of fear when she first started her gymnastics class but she is now doing very well and enjoying it so much. She is fantastically healthy which I am so happy about!!!
2 Samuel 7:18 "Who am I, Soveign Lord, and what is my family, that You have brought me this far?

No comments:

Post a Comment