Anyway, here we are, halfway through May. I get to soak in the fact that tomorrow Rylan will be done with 4th grade. 4th grade?!?!? What the hell???? Seriously. Thinking about him going into the 5th grade next year leads into a ton of spiraling thoughts.....
1. He will be in middle school soon. REAL soon.
2. He is going to start going through more "changes". How do you prepare yourself for that?
3. He is gonna be a MOTHER to lift.
Yes in regards to 3 we DO have a hoyer lift, and YES it is a pain in the butt to use.
I know I need to use it. I am stubborn. It will probably take a few more times of me throwing my back out, and possibly giving myself some bladder prolapse to get me to use it.
Most Special Moms know how it goes. You get a routine.....more like a pattern. I like to compare my day with Rylan like a song. It is the same beat and tempo everyday.
"bath, treatment, feed"
"Feed, brace, brace"
"weight bare feed"
"Brace, brace, feed"
"brace, brace, feed"
So adding a lift is just gonna mess everything up! lol
Earlier this year I decided that Rylan needed to be experiencing as much of life as possible. I wanted him to do everything he could do and be a part of.......
Last Saturday, we had the pleasure of watching Rylan get his trophy from completing his first season of the Challenger Little League,
I was super proud we got to take part in this, mainly because a year ago we saw the insides of hospitals more then we did our own home.
We had a lot of fun doing this. Seeing all the kids and how happy they were from being a part of a team was reward enough in itself.
There were times where Rylan made me feel like I was punishing him. In his pre-Pubescent stage of life, he would show some dramatics because we would hand over hand his batting and throwing a ball.
Most days he didn't like it at all! In fact we would laugh because some of the games he was either fussing or Trying to sleep!
But in the end he rolled away making some wonderful friends with great kids.
I think to date this was my favorite thing to do with Rylan, and I cannot wait till next year!
That leads us to today.
We of course see a Neuro Doc that specializes in Spasticity. Well not to long ago, Rylan got Botox in both his arms,
The Botox does seem to help for a little bit. But like most good things...it fades away after awhile,
Since then Rylan has had a LEAST one growth spurt. He went from fitting into size 12 shorts to size 16 in a matter of months.
Now this might not seem like a big deal to most. But to us CP parents its a damn nightmare! As the bones grow, the muscles do not, causing the tightness you see in most people with CP (Cerebral Palsy).
So as expected I heard the words "Baclofen Pump".
I know as he is getting bigger we are going to have to get more things to maintain his care. So now......I get to research what our next step in our journey will be. Thankfully I have yet to hear anything about said pump that is negative. SO that helps.
The surgery part leaves something to be desired, as I don't want to relive our pulmonary nightmares again.
So now I get to keep my nerves calm as Rylan's yearly eye exam is in a couple days. Remember last year? The doc tried to say he had a tumor on his optic nerve? Yeah I am still nervous. The main comfort is an ophthalmologist I know on a personal level reassured me that if there was something bad it would have been showing by now. Still, Im nervous.
Now I get to finish the night off watching The Sponge with my little guy.
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