Monday, January 25, 2016

Will health update Q4 2015

2015 was a medically challenging year for us. Probably the worst it's been so far. Two very long, emotionally overwhelming hospital stays along with some concerns about seizure activity. 

After the "brain bug" in April 2015, Will recovered slowly but steadily and by the end of summer he was back to himself. He had a sleep study done in August and it showed abnormal discharge from the frontal lobe. Not a seizure, but not normal. 

Sleep study - as if you can actually sleep with all that garbage on. 

So, we then had to do a 23 hour EEG. This is where you stay in the hospital for 23 hours hooked up with 20+ leads on your head and body and they video tape your entire stay. When we got bored we made funny faces at the camera, so I'm guessing 50 percent of the film had funny faces and the other 50 percent was us playing the Wii. 

You're not allowed to leave the room, but the weirdest part was that no one ever bothered us. Normally at the hospital it's nonstop people. I think we saw maybe 3 people total, excluding food service. 

All that same garbage from the sleep study is on his head, and more. They really wrap you up and then all the cords go into a backpack you wear (resting on the couch). He is basically tethered to a very long cord so he can move around and use the rest room. Cord management is clutch. 

Thankfully the EEG results showed NOTHING. Not even frontal lobe discharging. Apparently the sleep study results can occasionally offer bad information - that, or he wasn't having any discharges during the 23 hours we were there. Either way I have crossed this off my list of worries for right now.

In September Will ended up back in the hospital because of a reaction to amoxicillian. Quinn tested positive for strep throat. Will did as well, but he was symptom free, however, we started him on an antibiotic just in case. What really sucked about that hospital visit was Neil was on the other side of the world and for about 24 - 36 hours we thought he was heading towards liver failure. 

We are sick of this place... 

He ended the year slowly and steadily getting back to baseline. He was able to go back to school for half days and after the Christmas break he has stayed a few days till afternoon carpool! A huge win as he hasn't been able to make it till carpool since August. 


He is growing like a weed so a few weeks ago he was fitted for new leg braces. We should get those sometime in early February. He selected Power Rangers and Flash (one style for each brace). 

During the past few months we have noticed his feet have been proning in - he looks like he is walking on the inside of his feet or on his ankles. Small changes like that can be very difficult for him when he walks without his leg braces on. We noticed a few red spots and a callus forming on his feet so we had to make some adjustments to his leg braces and that seems to help. 



He used to enjoy coming home from school and being "boot free" all afternoon, but now he has been choosing to leave his boots on till bath. Even when we ask him if he'd like to take a break from them he chooses not to take them off. I'm guessing he feels more sturdy in them and more confident walking. It's heart breaking, but I'm really proud of him for realizing what his body needs. 

First pair of leg braces to the current pair. 

We are praying for a healthy 2016 for Will and Quinn. 

Speaking of, little miss Quinn will be getting ear tubes put in sometime in the next few months. She's had back to back ear infections. I would love to go just one month without a visit to any doctors or hospitals :-) 


1 comment:

  1. I'm so glad the EEG showed the sleep study was wrong on the frontal lobe discharge. I'm mad for your guys that you keep getting these scares. Its great that it ends up nothing, but dang the anxiety must be awful in the in between. Sending all best wishes to you guys for a healthy 2016.

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