Erin had an appointment with Rehab Medicine at Children’s Hospital on Wednesday. While she was there the OT stopped by with her helmet. Of course Erin didn’t want the helmet on but it also didn’t help that she had not taken a nap before the appointment. This morning I made her put it on right away. She tried to push me away, cried, and screamed but I still got it on her. She wore it a good part of the day until she got tired. She was moving into her “I am going to sleep” position on the couch and the chin strap was bothering her. So I took it off thinking she was about to go to sleep. The nap never happened and the helmet stayed off. I’ll just be consistent with her wearing it every day. She’ll eventually get used to it.
According to Alan the appointment with Rehab Medicine was a waste of time. This is the doctor who prescribed Baclofen in the hopes that her neck muscles will loosen. The doctor told Alan that if Baclofen was to work we would only see a slight change in motion. He did examine her neck but basically told Alan that we would know more about FOP than he does. I told Alan that we are not seeing any more specialists until we see Dr. Kaplan. Erin’s appointment with Dr. Kaplan is October 10th at the University of Pennsylvania Medical Center. We are feeling beat down b/c we’re giving her medicine everyday and we don’t know which meds are working and which isn’t. I think I am done giving her Baclofen for now. It makes her sleepy and with this last flare-up, she lost even more movement with her left arm/shoulder. I seriously doubt she’ll regain any movement in the neck. I had hoped this would be the doctor that would help us complete our application for a service dog, and I had hoped he would be the one to help us get additional assisted daily living items. The doctor pretty much said that whatever we need him to do, the genetic counselor assigned to us can do as well. Thank goodness we have Kate.
Erin now has a fairly large plate of new bone on her left side. I can feel it when I go to lift her out of her car seat or when I lift her up to sit her on my lap. Yesterday the kids had popcorn and I put the bowl on the table. I walked by and saw popcorn all over the floor. Immediately I blamed Larkin and told him to sweep it up (he likes to throw the popcorn in the air and tries to catch it in his mouth). As Larkin was telling me that it wasn’t him, I saw Erin try to grab the bowl and couldn’t quite reach it. She would hit it with her hands until she was able to tip the bowl over (which is why the popcorn was all over the floor). I stood there thinking, “Why haven’t I woken up from this nightmare yet.” She was able to reach the table not that long ago. At lunch today she had a difficult time getting the fork to her mouth. I ended up feeding her b/c the food would fall off the fork. As a parent, it’s so hard for me to watch her slowly lose her ability to do things for herself. I had just placed an order with Sammons-Preston to make her a custom neoprene helmet. I took out the catalog again today to look for special forks/spoons to help her eat.