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 :-) 

Merry Christmas 2015

Christmas was really great this year. A good mix of fun stuff, low key activities and celebrating with family and friends. For whatever reason, this Christmas break really "felt good" - it just seemed like everyone was happy and healthy and we had a lot of good quality time just the four of us. So thankful for our time together.

Getting ready for Christmas the Texas way, in shorts of course.

The icicle men - Will and Neil love tossing on as much tinsel as possible. 
We decorated most of the tree while Quinn was napping. She woke up in shock and amazement which was so fun to see. She of course got right in on all the action and helped put on a few ornaments we saved for her. 

"Donuts with Dad" at The Parish School - at some breakfast together then made and flew paper airplanes on the porch and over the bridge outside.

Carson and Will (and me) on our way to the North Pole courtesy of United Airlines Fantasy Flight program. Will and Carson were both overwhelmed with all the sights to see, per the jaw open photo of Will. They got to meet Captain America which was pretty cool because Will's leg braces are Captain America right now. 

Annual hayride in the Heights to see all the Christmas lights. Will was so funny to watch. He didn't want to sit with me or Neil - and enjoyed being independent during the trip. Quinn at first was a little like "whoa" and then quickly got into the spirit. 

Gingerbread house making with Aunt Lisa

Visit with Santa - Will stood tall and proud and asked for a GPS necklace. Quinn stuck her tongue out most of the time and didn't make a huge fuss. 

Christmas presents!

The kids Christmas present from us.. an accessible play structure. Each platform has a bench for Will to stop and rest on and he can, for the most part, get up with no assistance. Going down is pretty steep, but there's the slide too :-) He loves his swing and we spent nearly every home day since Christmas playing outside. Major credit to Nick from Imagination Woodworks for helping create and keep this a secret for three weeks! We had black tarps hanging up over our backyard windows so the kids couldn't see it. A huge success!

And yes, Will did get a GPS necklace for Christmas. Thankfully he has the language to describe what that is... a blue lanyard, a blue whistle and a blue flashlight. Thank goodness for Amazon Prime.

A visit to Santa's Wonderland in College Station. Over a million lights and a mile of trail riding in a horse drawn carriage. Everyone had fun. 
Special "mommy, daddy, Will" night - we made S'mores in our backyard. Will hasn't stopped asking to do it again. 

So many other wonderful times during December... Quinn's holiday presentation at school, Will's class holiday party, special outings and times with friends and family. 

Happy Halloween & Thanksgiving

I have been on a blogging hiatus for no reason other than I've been busy enjoying our life! I have a terrible memory so I am catching myself up for one day when I want to go back and see what the heck the kids were for Halloween 2015 :-) Here goes a long, photo post...

Happy Halloween!
Our motley crew trick or treating. 
Quinn was Elmo and enjoyed her first ever Reeces Peanut Butter cup. She seemed to really get the hang of trick or treating pretty quickly and had a lot of fun. (age: almost 2)

Will decided on being an American Ninja Warrior. Complete with wristbands, an official shirt and hat and work out shorts. If he could be Lance Peekus the Cowboy Ninja Warrior life would be complete. haha

Happy Thanksgiving!
Playing on the swing set I had as a girl, but with update swings. 

Cousins turkey picture 
Yummy, mashed potatoes! 

A few pictures I love from October and November...
My heart just melts seeing this picture

Dress up at school

School pics

School pics

Mito Fighter / Ninja turtle

Will and his buddy "S" going to see a play together