Day 1

Before I recap the day, I just want to say thank you sooooo much to all of you for reaching out to Weston, JD and I and offering your prayers. I published the blog the day before we left and we couldn't have asked for a better send off than we were given through all of your well wishes! It is much easier to get through this stressful time feeling the support of family, friends and even people we've never met! Today was a long day and we were told the hardest day, so we are glad it is behind us! We arrived this morning at Lenox Baker Children's Hospital, and the moment we walked through the doors, Weston's happy demeanor changed. He was obviously scared which bothered JD and I and got the morning off to a rough start. We met with Dr. Sun and Anne Fitzgerald (the RN that we've been corresponding with leading up to our arrival). They were wonderful. We spent the next 45 minutes or so just talking about the study, and asking questions while they got to know Weston and tried to make him more comfortable. I asked Dr. Sun about the study results thus far and you could tell that she didn't want to offer up anything too specific. I'm sure she didn't want to get our hopes up or crush our hopes! She basically just said that some of the kids have shown significant improvement but that they can't confirm whether or not the improvement was due to the infusion. Next we met with another Dr. who did a pyschological evaluation on Weston. This appointment was great because she just played with Weston for a couple hours and he had a good time! She played several different games and scored him on his cognition and speech. She was impressed with him and said his symptoms were obviously mild. (We love it when people say that.) At the end of her assessment, she said that Weston was within normal range cognitively but that he was behind on speech and pretending. She was happy to hear him jabbering and felt like he would probably start talking soon. She also said pretending starts to kick in more once kids start talking and she was also glad to see that Weston likes to pretend he's on the telephone. All in all, this appointment went well and JD and I felt like the results were positive. As you can imagine, we have been most concerned about his cognition and we love to hear that he is age appropriate in this area. His therapists at home have felt that way for months, but we can never hear it enough! After that meeting, Weston had several viles of blood drawn which was obviously terrible but the lady who drew it was super sweet and was giving JD a hard time. She was like "Dad, are you gonna let go of him? It's hard to tell this is your first child, Dad!" Those of you that know J.D. will appreciate that tidbit. Later in the afternoon, Weston had a physical and an evaluation by a wonderful neurologist. It went well for the most part. There was no pain for Weston, but he was still nervous and upset some of the time. You can just see the poor little guy anticipating something bad about to happen. Several people commented that he had obviously been to the Dr. too many times. The neurologist said he did well with the testing, and thought he would improve a lot with more therapy. He was very happy with his walking and felt like his hand was much more affected than his foot. We also love it when people say he walks well! He gave us some good advice. He said as his parents, we must research and weigh our options when it comes to different treatments for Weston. At the end of the day, we must go with our gut feeling. He said he is sure that no matter what decisions we make, they will be the right ones for our son because nobody knows and loves him like we do. Now how refreshing is that coming from a neurologist? That's it for day one. We took Weston for some ice cream for being so brave and now we are getting ready for infustion day tomorrow! Thanks again to all of you for praying for Weston! Please keep it up! We'll post again tomorrow!