Thursday, May 28, 2009
What's Next For You
Last night and the night before you did really well. You really had no reaction to the re-infusion after you got past that first hour post infusion, and you being so out-of-sorts from the meds and the 7 people in your room all contributing to making it too warm in there (not to mention that you created your own heat trying to get up and away from all 7 of us).
Today & yesterday you were in an amazingly good mood. You are usually in happy spirits, but yesterday you seemed to be in a great mood and were very happy and playful. Today you were a bit more tired and finally took a good nap -- something you had not done since we have been here. You are also really cuddly and want to sit in my lap a lot of the time.
Yesterday we had a 3:00 appointment with the neurologist that Dr. Kurtzberg refers her patients to. Since it was at the end of the day, we didn't do any 'playing' other than going to the pool in the morning. It was nice outside all day.
We had today off -- no doctor appts and it rained most of the day (real rain -- with thunderstorms). We drove around through Duke University campus & also North Carolina University campus. I took lots of pictures of you in the car. We had bought a 'noodle' at the dollar store yesterday, so we could play in the pool with it. Since we couldn't play in the pool with it, we played in the car with it!! and then you finally dozed off and slept until we got back to the room. You still seemed tired after we got back here and that is when you took about a long nap here in the room. You needed that and are now awake and in another great mood.
So, now the wait begins. Dr. Kurtzberg said that we really wouldn't see anything for about 6 months. They had done studies that tell them it takes about 6 months for these cells to be seen in the brain.
We had a great surprise on Tuesday, when June told us that they had held back about 20% of your stem cells. That means they are holding over 100 million that you could have at a later date, if needed. We also learned that you were given over 600 Million cells. Wow -- that was a lot more than we expected. We left Duke Children's Hospital feeling very positive and excited for you.
So, we begin our waiting and our continued prayers for a miracle in your little body. Your father and I are very thankful to Dr. Kurtzberg for providing this opportunity for you. She is doing an amazing thing for little ones like you and we are blessed we found out about this through ViaCord (the place where we banked your cord blood).
As I mentioned in my previous letter to you, the clinic where we saw Dr. Kurtzberg, seems to also take care of many children that seem to be fighting for their lives. It is pretty sobering to see all these children fighting for their lives and then there are a few of us, re-infusion patients, hoping to give you, our child, a much better life. I guess, Dylan, in the end we are all striving for the same thing -- a better life for our children, but the reality of just how fortunate we are that you made it through your difficult birth, and are still working hard to recover from a tough start, seems to really hit home in this environment.
We feel very blessed and are proud to be your parents.
Mom & Dad