Yesterday was Ryan's corrected Birthday. That means, he's officially 1-year old. This 'birthday' is the one that therapists and doctors use to assess his development. Obviously given the number of setbacks Ryan has had to overcome, he's got many delays. However, we had his one year follow up appointment at Mt Sinai yesterday and he blew them away. Last time we were there was May and he was just approaching 8 months. At that time he was sitting unassisted for about a minute. Both kids have colds so I wasn't sure if I was even going to go to the appointment but Ryan's cold seems to be on the way out and I didn't want to delay the appointment if I didn't really have to. We had the doctor who was on duty the day Ryan was born. She's the first doctor we spoke to in the 'quiet' room where they tell you everything that is going on with your baby. She introduced us to all the scary medical terms, particularly Intraventricular Brain Hemorrhage. Ryan's IVH was a grade 4. That's the most severe. Ryan's IVH was on the front left part of his brain. We were told that it could effect his right side muscle functioning. This is true. His right side is stiffer than his left and his right hand is less coordinated than his left. However, one major outcome of a severe IVH is Cerebral Palsy. We were told that sometimes it can be diagnosed at 1 year corrected, so this appointment was a biggie because I've spent the last year preparing myself and doing research about CP.
The morning started out with a black cloud - literally and figuratively. It was dreary and rainy, and I was feeling a little lack lustre about the whole 'birthday'. I'd originally wanted to have a big celebration because back in April when we celebrated his actual birthday things were still tense with feeding, oxygen, and infection control. I had high hopes for bouncy castles, friends, and fun. But - Ryan got a cold, reality about how expensive bouncy castles really are set in, and we've taken the leap to take a vacation to Nova Scotia in September (more on that later) so we're on a tight budget for the next little while. Anyway - we dragged ourselves downtown for the dreaded appointment and then things started to brighten. Ryan blew them away. He was sitting like a champ, making great eye contact, using both hands nicely, and after he became more comfortable in the room, he showed them how he's almost crawling. The doctor and OT were very impressed. When I asked about CP the doctor said that at this point, she doesn't want to give him the label. He's showing a couple of signs of mild CP, but the things he's showing (increased muscle tone on the right) can start to decrease over time and since we're doing so much therapy, there's a good chance he won't get worse. This was a very pleasant surprise. We were ready to hear the diagnosis because a) we don't want to find out too late and b) there is funding for kids with CP and c) there are looooong wait lists for services and we want to get on them ASAP. The doctor understood that, but she said she doesn't see the need to diagnose yet. There is an in-depth assessment coming up in February for his 18 month follow up, so things could be different then - but I plan on looking at what is required by then and we're going to start working on those skills now. I cannot imagine if I had to be working right now. Everything Ryan has accomplished is because of the hard work we've all been doing. This is really long. I have to wrap up.
In conclusion, the day that started with a black cloud ended with this:
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| It was worth pulling Sadie out of bed to see it. |
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| Happy 1-year old |
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| Happy Doctor. Right after this picture Ryan started smiling and laughing with her. |
Good job Ryan!! Keep wowing those doctors!
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