Therasuit 2020

Cousin sleepover!

No siblings at therapy, which I have been pulling off with our evening sessions. However, now we are starting therasuit which is from 8-11 for three weeks. We had insurance issues the first day so we couldn't go back anyway. Side note: now that Everett is five his insurance thinks he only needs 60 days of therapy A YEAR, yea, this is a problem. I've avoided dealing with it, but need to start trying to figure out what the heck we are going to do. The therapists allowed me to bring Clara back if the front door cops let her by, which they did. But Friday, in our first week they told me she had to go. So I called Kristin in a pinch and took her there, although she had two classes to take that day. I planned out the following week for others to care for Clara. Andre would have to take her in the AM and I'd have to hurry and get her since Everett is starving and so tired needing a nap. All our free help is ALL over the county, no on is close to us or therapy. Mimi is the closest and so we lined her up for Monday. Clara gets so mad when I get there because she is in heaven with Mimi. They go on adventure walks, have tea parties, picnics, and do whatever Clara wants. Thankfully Monday night I got word siblings could come and we were in the clear for the remainder of our time. Clara likes going with us and Everett works SO much harder with her, she motivates him and paves the way. She is the BEST big sissy and without her there for two days it made a huge impact on his efforts. He was so happy to have her back! This is us going to get sissy after she got the boot at Kristin's.


Of course he grabs books to read!


Thanks for the PJ's Porcello's!!!! Everett LOVES them!


This "therasuit" outfit forces him to use patterns he doesn't naturally use. It's tight and just wearing it is work and takes a lot of energy, even without moving and working. Many kids need to slowly ease into the suit, Everett is a champ and doesn't mind it at all. Sometimes it pinches his skin and leaves marks. I have that he cannot tell me where it hurts when it hurts. His therapists do a good job at making sure he is comfortable.




Everett's new wheels!!! I'm so excited about this!


They finally get to be together!

Practicing Money



Before counting we had a little experiment.



Best big sis at therapy. When she isn't getting him to do his job, when he is busy and content, we sneak away to play games.


Engineering a Mars Rover






Monster masks - perfect for practicing cutting, gluing and then make believe!







We busted out the glow in the dark track. This was fun for days until we needed our carpet back!

We had a big cardboard box and Clara made it into a car. She then filled it with everything Everett would want and pulled him all around the house, for at least two hours. it was HEAVY, she got quite a workout. 

She's got her bubby all dressed up and ready to go! Quick break for a book!


Going through stuff!


Who are these cuties?










pooped - this is Everett after he wakes up, therasuit is kicking his butt

He starts the day off with his OT, heated packs and a massage to loosen his muscles. This cage he is in allows him to lift weights and isolate certain muscles. He is surrounded by sand bags for support and he has all sorts of "casts" that are wrapped around him to help him use certain muscles and not use his entire body.

After an hour in the cage building muscle, he has OT/PT overlap where he works on some fine motor while working his core and snacking. and then he gets his suite on and finishes the last hour with PT and gross motor practice. He needs our help 90% of the time to motivate him and keep him going in a positive way, it's very redundant and exhausting. Everything for his body is 8 times harder than it is for the average person. I will never understand how he accomplishes what he does and with his fun loving attitude. He has his therapists laughing and smiling, always. Well, minus two days where he hit a wall and was sore and tired and cried. :( Which is typical. I remember it from the last time we did this two years ago. Overall, he is a rockstar.


Everett. Hates. Obstacle. Courses!!!!!!!!!!!!!!!!!!!!!!!!! Thank goodness for the best sissy motivating him the entire way!


Jumping


Rover, complete!










Someone misses Grandpa! He spends time every day looking at and pointing to Grandpa!