Just two quick updates from the last two days. Monday we had Cole's monthly appointment with Heather from Early Intervention. I have become a little worried about his posture recently and wanted to discuss it with her. Cole has tilted his hips and pushed out his belly since he started walking, but we have always chalked that up to low tone with the hope that it would become less pronounced as he became a more stable walker. I mentioned my concern to Heather and she agreed that it was more exaggerated than it should be at this point and recommended a PT consult. She is going to request an Early Intervention PT visit him next month and we will also see Reagan's PT on Tuesday to get her opinion. Heather said his hips are moving as one instead of separately causing him to stick out his belly and therefore throw his shoulders back to rebalance. The good news is that she doesn't think it's a skeletal problem but rather a muscular one. I will post an update next week.
We also had Reagan's first Botox injections at Children's National Medical Center Tuesday. We had an 8am appointment that required a 6am arrival so we were on the road by 5am. On a positive note that means traffic is lighter so we were happy! Given there were 15 deep tissue injections, she was anesthetized for the procedure. She got a really cool folder this time that had coloring pages and activities to do while she waited. Most helpful, however, were the pictures of all the equipment she was going to see and it gave us an opportunity to prepare her before we went back into the operating room. Although she sees some of the equipment at her other appointments, she doesn't see the oxygen mask very often and the bubblegum smell didn't make it any less traumatic. She was definitely anxious, but overall did very well. 
Botox injections are commonly used for kids with Cerebral Palsy. Botulinum Toxin type A, or Botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles. Reagan has spasticity in her left arm and leg because the nerves aren't communicating effectively with the muscles. The Botox will block the transmission between the nerves and the affected muscles, therefore relaxing the muscle and reducing stiffness to allow better stretches and increased range of motion.
She is at an age now that she asks a LOT of questions. To give you an idea, she has asked me three times this week why we live on Earth. Apparently not satisfied with the answer that other planets are hot and don't have water. She reminded me that we could just bring water with us. So when she asked why she had to go to the hospital it was hard to know how much to explain. We try not to talk about her weaknesses but rather focus on the things she does really well. She was persistent asking why we went to the hospital and being told that it will help her wasn't enough. So I asked her to put out her hands. As you can see in this picture, she is getting much better at opening the fingers on her left hand but she still can't get her fingers straight or isolate any of them (e.g., to point). I then asked her to turn her hands over with her palms up and as you can see in this picture she had to use her right hand to get her left hand turned over. Even then, with the restricted range of motion, she isn't able to rotate her wrist or extend her fingers. I tried to explain that we know it is hard for her so we went to the hospital to make it easier. She looked up with the saddest little eyes as if she had disappointed us. It truly broke my heart. I reminded her it was ok for things to be hard, but it was one of those moments as a mom that you wished you could take away all your child's pain. We will focus the next few months stretching and doing activities to optimize the effects of the Botox injections and will return to see the Physiatrist July 24th as a follow-up to the procedures. Although she said we may see some improvement in a few days, it may take up to two weeks for the new nerves to generate and start to show whether the injections will be effective or not. We are so blessed that she wants to please us, that she cares enough to try, stubborn enough to keep trying even though it's hard, and smart enough to understand why we need to work so hard.
What a courageous spirit!
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