It’s been a while since I’ve been on here but that seems to be the case with me. This blog is my therapy and I seem to post when stuff is happening. Here’s to my free therapy because life has thrown us yet another curve ball.
Looking back, my last post was the day Braeden had his G-tube removed… 12/12/12. A great day and I’m happy to report all is still good in the land of eating. Other stuff, not so much.
We have always known something just wasn’t quite right with our little man, but it’s always and I mean ALWAYS been deemed a “Global” delay. No one has ever added up all the variables to equate it out to a diagnosis of something. Very frustrating. When your child has “Something” you can look at here’s the problem… here are some solutions or things that work for that particular issue. With a Global delay, you handle stuff as it comes up. The latest issue to “come up” was B’s toe walking.
B had an IEP (Individualized Education Plan) meeting right at the end of the year where he was approved for Physical therapy offered through the school (for anything school related.) During this meeting it was strongly suggested that B see an Orthopedic doc and a Neurologist due to the toe walking and other issues like his high and low muscle tone (not new stuff here.)
We met with the Ortho doc yesterday and after taking a few x-rays it was determined that B doesn’t have any skeletal issues. Which is great but it also means it’s something else. In talking with the doc about other things going on… drooling, scar tissue, language delays, swallowing issues… All is pointing toward Cerebral Palsy. This is not an official diagnosis, as B still needs to meet with the Neurologist and go through testing there but, it is strongly suggesting this may be what B is dealing with.
As most of you know, B at birth was fine and things went bad and he ended up needing procedures early on. His first procedure he wasn’t even 6 weeks old and crashed five minutes in and needed to be intubated. He was very difficult to intubate and we are still not 100% sure how long he was without oxogen. I believe this may be what caused his possible diagnosis.
Right now, I am upset, scare, nervous, and exhausted. I want his Neuro appointment now but have to wait until the 29th. It’s torture not being able to talk with them and see what their perspective is and of course get testing. In the meantime, he will begin Physical therapy again outside of school and is being referred to get leg braces to help him walk flat.
The upside of this is we may actually start having some understanding of a lot of how our son is. The Ortho doc stated that the fact he is walking is a good sign, most with CP either don’t walk or need a lot of assistance in walking. So if this is in fact CP, he is high functioning.
So, for now we wait and hope.