It’s been a couple weeks since I’ve written on the blog. We recently had our neurology appointment on August 2nd at the Hospital for Sick Children. Nothing really transpired from the appointment. We did wait there for a few hours while several doctors discussed Pipers situation and went over her various tests. Their conclusion was that the hypotonia was being causes in her brain. It wasn’t it her muscles or her spine. They also thought that what she has was there from conception, meaning that they think this is a genetic condition causing the hypotonia. It was nothing that I did or could have changed because she has always been this way. They said she is going to have developmental delays and other problems throughout her life but doctors never really know. I mean they can guess and assume what Piper will be like but they just have no idea. I’m trying to maintain my hope and prove those doctors wrong.
Next steps? We are waiting for an appointment for another MRI and we are going back to genetics. I was really surprised about how quickly we got back into genetics. After the coordinator phoned me and said she had an appointment for November I protested stating that I couldn’t wait that long to know what is wrong with my child! She called back a couple of days later and we are going in to see them tomorrow morning. We are also scheduled to see cardiology tomorrow at noon, so this should be interesting.
As far as Pipers development its been going well. She is getting stronger with her head control and the PT and OT are now working on her abdominal muscles to help her sit. The PT that we have is quite amazing with Piper and very knowledgeable about programs and services in the city. On request of the PT I am filling out a registration for the Easter Seals of Canada. I’m hoping to get some funding to be able to get Piper a car seat soon. The car seats can run about $4000 to $5000 so it would be great to get it paid for by Easter Seals! She is outgrowing her infant car seat and I don’t know if a store bought car seat will give her enough support. I have a representative coming in in the next two weeks to show me the seats and I can even try them in my car to see if they would be a good fit. In the meantime I think I might try Piper in Fynch’s car seat to see if it would work for her. Of course I’d have to turn it around and recline it, but you never know.
For now the neurologists have said that I am doing everything I can do for Piper. They suggest keeping up with all of her therapies and waiting to see how she progresses. Although they are time consuming I know they are the best thing for Piper. I really do rely on other people to tell me how she is improving though. Since I am around her every day it’s hard to judge how she is doing. The various therapists, family and friends are the ones that give me supportive words letting me know that she is doing better. I’m hoping for more progress within the next month!