Thursday, July 2, 2015

Summer fun!

Wow, it's been almost a month since I last updated - we have been having too much fun in the day for me to stay up late and attempt to blog at night.

Health wise - Will is still recovering from that stupid virus in his cerebellum. I would guess we're close, but not quite back to baseline. It's really the stamina piece that's going to be the longest one to achieve.

I am thankful that he's now back to being able to regulate his emotions and not be as angry. Probably helps that he's using his words better too. Time outs have been significantly reduced.

During this past month he has seen immunology, neurology and palliative care doctors; as well as weekly PT, OT and Speech therapists. All are happy with his progress. He will have an MRI and dental work done under anesthesia on July 16. This was actually pre-planned before the brain bug; we are definitely curious to see how his brain looks after all this.

In PT, he made some major progress. He can do a full sit up now with someone just holding his legs. We attribute this new trick to swim lessons and playing Zelda on the Wii. What's that you say? Playing a video game made his core stronger? That's right. He stands playing as the Swordsman and has to slay all these animals coming at you on the screen. It's actually a pretty intense core workout for a kid who has little core muscles.

Speech we are working on "rapid swallowing" - he seems to get choked up when he gulps or drinks without a straw. But from a language and articulation standpoint he's probably back to baseline.

So what have we been up to this past month???

Cousin time!

First time on the boat - she was not happy at first, then by the end was wanted to climb over the side.

Our crazy driver - he loved it!

Kindergarten graduate! 

When he went up to receive his diploma he puffed his chest out and stood tall. It was hilarious to watch his whole body change demeanor when he was called up. It was like, "that's right people, I did this and I'm pretty proud of myself" -- We are so proud of everything Will has achieved. It's an incredible gift to see him do all the "normal" kid things - like going to school and learning how to count and read. 

A little stress reliever for us! An adult long weekend escape to Austin! We ate, we slept and we lounged pool side. You could see the famous "Austin Bat Bridge" from our hotel room; we watched for the bats every night and they never came out. Instead we saw a wreck on the bridge, might have been more entertaining than the bats. Everyone was okay. 

Will's reaction to being at the med center for six hours. Did his blood draws like a champ though!

Will always wants to stop and see the "big guys" and so I finally figured, why not!? He was thrilled.

Cousin time - Carson and Will love wearing all their "gear" - lanyards, walkie talkies and ID badges to name a few. 

Rocking out with Carson

First swim of the season with the diva. She loves water play at school too. She will stand in the baby pool, lean over and put her entire face in the water and stand up smiling. She also likes the hose; she followed her teacher around who had the hose, and kept pointing at her head to be sprayed. 

She can barely stand with that life jacket on LOL

Swim lessons! At first Will wasn't a fan, but by the end he did great. We were focusing on not freaking out if your head goes under, how to hold your breath and kicking. 

He got his entire head and face under water by the end! 

Train rides

Helping me pack for the UMDF conference! More on that later... 

Lost his two front teeth; he looks like he just has little vampire fangs now. 
And had a sleep over with aunt Lisa while I was out of town. 

I have to admit, I have been pretty nervous about summer time and keeping Will occupied... So far I'm thankful to say he has been having some good fun with more to come. 

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