Fantastic News and Other Tid Bits

We got a call late tonight with some of Nathan's blood test results that we have been anxiously awaiting since last Thursday.

For the first time in Nathan's life his white blood cell count is in the normal range! For those of you who don't know why we are so excited, here is the scoop...

(This is my own interpretation, not meant to be medical advice, or taken as scientific fact!) What I have learned, and have been told, is that an elevated white blood cell count means there is likely some kind of infection somewhere in the body, sometimes it can be a indicator of the big ugly "C" word...cancer. The twist with this particular problem is his medical team (which consists of several fabulous specialists) could never find what was causing the elevation. It was a mystery. Dr. Hematology even consulted with the RTS guru from another country... he was baffled as well. So we were left with a big unknown as to why the count remained so high.

This particular medical issue is one that has constantly been on the forefront of my mind since my sweet boy was an infant. I do not like not having answers as to what is causing Nathan's medical issues, especially when the "c" word is thrown around in the mix of possibilities (some medical journals state that he has a higher risk of cancer because of his syndrome). My mommy "gut" feeling, not medical fact, tells me that the elevation was due to his chronic lung problems during his first 18 months of his life. His lungs NEVER had a chance to heal because he was sick, intubated, and had so many sedations in such a short amount of time. Since we have been so over the top crazy about germs and sickness, he only had two colds during 2010, allowing his lungs to clear and get healthy. He also had ZERO hospitalizations, intubations, sedations, a far cry from his first 18 months of life. Yes, we have been over the top by avoiding public situations and anyone with a known sickness so I have to find some justification for our craziness. It makes me feel better to attribute his well being to our fight against germs even though it may actually have nothing to do with it at all. I hope that statement doesn't come back to haunt us with sickness just because I feel so good about his current state of health. So I am hear to say, I will take a deep breath and try to file this one away...yes, I just said it, so now I have to do it.

In the same breath, I just want to say that I am aware that there are several RTS babies right now that have been very sick and are currently hospitalized. As we experienced for a year and a half with Nathan, these times are very scary and filled with moment by moment uncertainty. These experiences tear families apart by miles and hours sitting in hospital rooms waiting and hoping for good news. My heart and thoughts are with these families in hopes for a speedy recovery for their children.

The other information we received is that Nathan indeed has low ferritin levels, which Dr. Pulmonology thought might be a problem after his last sleep study. Nathan moves around in his bed A LOT during the night. Sometimes he even wakes up and has a party in his bed for 2-3 hours during the middle of the night, or shall I say, early morning hours. He never complains or cries during the time that he is awake, but he sure does plenty of hooting (my RTS family knows the sound :) and keeps us awake! So it is confirmed that the low ferritin is likely causing the sleep problem and can easily be fixed with an iron supplement. We are hoping it helps!

In other news, we have started the potty training process. Around Christmas, Nathan started signing the word "potty" so we took advantage and started putting him on his little potty. He has had a lot of success, but I know it will take a long time. He has taught us that the second he signs "potty" we had better get him to the toilet or else it's too late. Much more to come on this adventure!