Today I took Ali to the rehabilitation hospital where my mom used to work for the first time.
My mom worked there for years. She even worked with the doctor that Ali saw today. Last week my mom contacted one of her old Social Work colleagues and thankfully she agreed to come and sit in on my appointment which was great. All those years that my mom worked there with children and families just like ours and I never once contemplated having a child that needed to be there. I think I went there a couple of times to get a ride home with my mom when I was going to college nearby. I know that one time one of my friends and I went there to borrow the car when we had an afternoon off of school but I never stopped to think about the people who take their children there. Now, after my mom is gone, it still brought me comfort to know that she used to be there every day working with families like ours. I guess it was because knowing how much my mom cared about her clients made me realize that the people there would care about us too. So thanks mom!
We met with a physiatrist today that specializes in working with children with neuromotor and neurodevelopmental issues. He has decided to see us in his regular clinic which means that Ali will have the benefit of seeing him, an orthopedic surgeon, a physical therapist, an occupational therapist, a speech therapist and an audiologist. He also did x-rays of Ali’s entire little body to make sure that everything is okay. This clinic sees three other children with Costello Syndrome which will be very beneficial for us.
After his exam today, the doctor didn’t think that Ali had any severe physical issues other than the ones we were already aware of (severe hypotonia and being visually impaired). He said that she is very strong which was news to me and that she shouldn’t have any physical barriers to sitting, standing and walking, she just needs to get there developmentally. He also felt that she is surprisingly healthy all things considered! We firmly believe that although Ali is severely delayed, cognitively she is doing well. Our OT feels that she functions at about 11-12 months cognitively but only 6 months physically. She’s so young that it’s hard to know but we’ll take what we can get!!!!
As for right now, Ali has another cold. The poor little thing really suffers when she has a cold so we’re not getting much sleep and she’s spitting up a lot. Our little pooch Bailey is having major surgery on Thursday so it may be one of those weeks when I don’t get any sleep! Lovely!!!!