Today is our first day back at Duke for the second phase of the study. I haven't posted any updates in a long time but I guess the most important update that I've left out would be our last neurology appointment in November of 2012. Dr. Puri was REALLY impressed with Weston's progress. He had been pushing us to do constraint therapy (casting Weston's right arm to force him to use his left) for the past year but we never felt comfortable with it and ultimately decided it wasn't what we thought was best for Weston. Well, when Dr. Puri saw Weston's progress, he said it was the kind of progress that he hoped would have resulted from constraint therapy. Since Weston is doing so well on his own, he no longer thought the casting was necessary. That was music to my ears because we battled with ourselves over that decision! On top of that, Dr. Puri also wasn't convinced that Weston's delayed speech was stroke related. He thinks he may just be a late talker....again, music to my ears! Speaking of speech, Weston has been in a word explosion over the past few weeks so I'm feeling really good about where we are right now.
Today Weston will just have a physical and neuro exam. Tomorrow is MRI and infusion #2. Wednesday and Thursday are OT and PT days. It's crazy to think that after tomorrow, we will know for sure that Weston has received his stem cells. He's improved so much that I don't feel as excited about this year's trip. I guess deep down, I believe he already received the cells and that tomorrow is kind of a waste with regard to Weston receiving a helpful treatment. (I obviously know it's not a waste because we are contributing to the study) However, I try to keep reminding myself that it IS possible that he's improved this much on his own and what a huge bonus it would be if he receives the stem cells tomorrow! I guess I'm in the best possible position going into tomorrow. It's a nice feeling ;)
You guys are in our thoughts and prayers.
ReplyDeleteThanks for keeping us in the loop.
Weston is an awesome child-smart as a whip and we love him very much.
Best of luck this week!!
Love u guys