Friday, May 8, 2015

Health update after the "brain bug"

It's been about a month since we were in the hospital dealing with a viral infection in Will's cerrebellum. They said to expect a slow recovery process, even slower since he has Leigh syndrome and his immune system doesn't work as well as others.

It's been slow.

Physically - he's much improved. Maybe at about 85 percent back to baseline when he's not tired. One of the PT goals was for him to walk 20 steps without loss of balance or "legs giving out on him" - he was able to do this unassisted but you could see him take weird steps to catch his balance.

Speech - again, much improved. Probably at 90 percent? He struggles the most when he is tired. His vocabulary is fine. His speech just sounds extremely labored or slow. The other thing I've noticed is that he either doesn't want to talk or he just blabbers on and mumbles out very elaborate stories that don't make sense by the time he's done getting it out. We were in the car today and it was like he couldn't even take a breath he just kept going and going and going. I finally told him to stop talking and take a break.

Emotionally - Wow. We have had "angry Will" with us for the past month. Angry Will likes to yell NO at me frequently as well as hit, kick and scream. The Sunday after Will's birthday (26th) Neil and I both agreed it was the first day we didn't feel exasperated with his attitude. He seems to keep making small improvements.

I had even emailed the doctor asking if he was having some sort of long lasting "roid rage" from having an IV steroid at the hospital for five days. Apparently not. More likely it's just a side effect of the bug in his brain.

I know he's been through a lot and is trying to establish some control in his life. He needs to feel safe and secure and that nothing else bad is going to happen. We are doing the best we can to help him feel that way, but it takes time to rebuild trust.

But wow, I thought I had patience. It has been tested about 1 million times since April 1. I mean to the point where I have to leave the room.

I know he misses school, his friends, teachers and a normal routine. Heck, I miss my friends and a normal routine too.

Time, love, compassion, patience and a good venting session will help build Will back up after being scared and worried for so long.

But it's not all doom and gloom around here. I can't sit here every day all day. We would both be going crazy.

So what the heck have we been doing for the past month???

The first week home we watched A LOT of Mickey Mouse. He finally started wanted to play the Wii on the second week home; which was a great sign.

My work assistant

The third week he went back to school for a couple of hours for a couple of days. He can't last much longer than 3, maybe 4 hours at school without it becoming a safety issue.

Goooo Zebras!

So, stamina and endurance continue to be our number one enemy. But on the days he goes to school he is so much happier. I am able to sit in the front office and use the wi-fi and work, he is able to socialize and work on stamina. It's a win win for about 3.5 hours :-)

Meeting dad for lunch during the day!

Going on the class field trip to the Aquarium 

Loving our friends

Planting and watering the herb garden

Visiting the dentist - apparently one of his new 6 yr molars is coming in and his gums do not like the invasion. We have to do a rinse for a few days to try and help his gums get less angry.

Celebrating Carson's birthday!At Chuy's and...

Visiting him at lunch at his school. First graders are loud! 

The Thursday before we were admitted to the hospital, Will had a prescheduled EEG done. This was to determine if there was any seizure activity going on since he had been struggling since January. We found out it was normal while in the hospital. Hey - look at that, we didn't have to have an appointment to find out the results! Multi-tasking :-)

Visited the boot place and happened to be in the Zebra / Jungle room - had to get a pic with the Zebra and send to his teacher :-) While he does need new leg braces, we decided to wait another month or two. They were able to splay out the top portion so his calves would fit better. We're doing this in the hopes that during the next month or two it will allow him to get stronger so when he does get new boots we can actually tell if they are working or working against him. Boots require a lot of fine tuning for him... 

And last but not least... our little sister keeps us all on our toes! 

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