Friday, June 13, 2014

Hot, happy and healthy

It's hot. Hot as hell. I hate the heat because it means Will has to wear his cooling vest to attempt to help him regulate his body temperature. I feel like a caged animal on the weekend - it's too hot to go anywhere and the places we could go (eg. play gym) are just beyond his physical abilities. So we improvise...  water play, trips to "fun" stores, swimming and playing every sport imaginable inside the house. Shockingly, nothing has been broken... but the summer is young.

Will seems to be doing okay with the heat. We had a routine check up with the neurologist this morning. All is good on that front.

Top Two Things I Hate Doing With Will:
-Getting him to pee in a cup (it simply doesn't happen)
-Taking him to the dentist (dreading that appointment in July)

Just about everything else is manageable. These two items SUCK. I laughed this morning when they handed me the pee cup. It was all I could do. He had just sucked down a juice box and I thought for sure, this time it will work. Nope. 15 minutes of trying / screaming / crying / laughing / sighing / resting his head on my shoulder and no pee. This kid pees non stop. He's like a dog constantly marking his territory, but today, no pee. Of course, we got to school and he peed a ton. Looks like the urine capture bag is once again in his future.

Beating the heat AND playing sports at Academy. 

I was having a conversation the other day with a fellow mighty mito mom. We were discussing how much we hate Leigh syndrome and how it robs our children of so much. I feel so guilty that Will can do so much, while her son struggles to roll over. While each level of abilities has its challenges, she commented that it would seem much harder to parent and have the abilities Will does, but missing some crucial ones like balance and mobility. Will can appear so normal, that it's easy to forget he has limitations.

He asks how many more years till he is 21 (clearly takes after his dad on that), or that he wants to be a fireman when he grows up. It's a weird place to be - I don't want to lie, but I actually don't know the truth. He might just do all that. I pray and hope every day that he does.

I picked Will up from school the other day and one of his teachers was telling me about his day. She said they were jumping on the trampoline (a small indoor one / one kid at a time) and Will said he couldn't do it because he can't jump.

Of course that broke my heart, but then she said she told him, "Oh yes you can!" She pulled him up on there and started helping him jump. I had to breath deeply so I wouldn't fall apart crying.

It's people like that who make Will's life so full of happiness and fun times. We modify so many things so he hopefully feels "part of the group" - a group that is now on soccer teams, participating in swim meets and experiencing a level of independence that he may never know.

Will has started getting his clothes on in the morning by himself and doing his hair. He pretty much only gets the front part combed down and looks like Jim Carrey on Dumb and Dumber.

Working on "self-entertainment" 

First swim of the summer!

I can't leave out our little Quinny or Quinn Bear as Will likes to call her...  She is now 5 months old, eating solids and started at a part-time Mother's Day out program. She is cutting her bottom teeth in, hello drool.

Look mom, I'm drooling. Constantly. 

Not happy. She hasn't quite figured out how to sleep at school; so we usually get a grumpy bear in the afternoon.

Post bath. Not much hair to wash yet. She has a top fuzz, then a bald ring and finally a little mullet.

True to form for a second child - Quinn's first day of school photo. 
Kind of forgot to get one at school or even with play clothes on. 

1 comment:

  1. OK, you probably already thought of this but did you turn the faucet on to inspire pee? That was always my trick. Of course, it made sleepovers at my best friend in middle school's house who had a gurgling fish tank a pee fest but it is what it is ;). I feel for you and Will because I'm always to the point of floating eyeballs before I can pee in the ocean or tubing down the river. Peeing on demand or in weird situations is no bueno. That last picture is breathtaking. You have beautiful babies. Hug both those little longhorns for me.