Sunday, April 27, 2014

Another time at Jill's House

This little boy loves his time at Jill's House.  Another time for him to be spoiled.  Lots of time outside in the nice weather.  Enjoyed some music and of course the pool.
We all went to pick him up.  He was relaxed and happy.

Tuesday, April 22, 2014

Saturday, April 19, 2014

Being thoughtful

Serious thoughtfulness by a friend I never get to see but do not live far from.  Volunteered many years with her at church.
A little box of joy arrived in the mailbox, just for me.

Thursday, April 17, 2014

The Birthday Boy's theme song this year...

It's my party and I'll cry if I want to.

The day of Brayden's birthday, he was not in the partying mood.  He was tired (perhaps from our zoo visit the day before).  He was not wanting to leave his bed much, so Carter and Luke brought the party to him.

They blew up balloons (from a left over tank I had) and decorate each one of them.  A big bunch and more to hang around Brayden's bed.
 Jeremy came home and we had our own little birthday party, just the five of us.

I wanted Brayden to sit up in his chair, like a big boy, to help open his presents and have tasting of his cupcake. 
However, Brayden was not having it.  No matter his age, he would rather curl up in daddy's lap.
Some how, the dog decided she needed to be in on the action and quickly found her place right next to Brayden.
Once everyone was settled, we opened gifts, sang Happy Birthday and had cupcakes.
Brayden had no problems with a little taste of icing.
Not quite the big birthday party we usually have but none the less, Brayden was not the mood for big hoopla, just a quiet birthday afternoon.
 Brayden had no problem letting us know when it was time to wrap up the festivities...
 Brayden is 7 seven years old.  WOW.

Friday, April 11, 2014

Possibly the best Field Day ever

A few weeks ago, I received a flyer about Brayden's first field trip.  Adapted PE Field Day.  Then I found out I was able to go with Brayden's class...and wow, I am glad I did.

The 3 buses for the five kids in Brayden's class (one kiddo could not make it), only two spaces for wheelchairs on accessible buses thus 3 buses, and we arrived at Heritage High School.  We unloaded the bus and entered the school with other special-ed classes from around Leesburg (elementary - high school special-ed).

The kids entered the school.  Immediately we could see this day was going to be something special.  The hallways were lined with the high school students who started to clap and cheer for the kids arriving.  High fives and cheers galore for the kids coming to the Adapted Field Day.  A true roar of excitement.

It was absolutely precious.  I burst into tears and knew that I was making that terrible ugly face when trying to hold in the tears.  I was just overwhelmed with it...this was for our kids.  I was overwhelmed with why it was for our kids.  I just wanted to high five and hug every single person there but not wanting to look to crazy I just stuck with Brayden.

The kids were each assigned coaches and were given Field Day t-shirts!  The coaches had their own shirts with "Coach" on the back.  We met Brayden's coaches and off we went to play games.

The coaches showed no fear or nervousness about any of the children.  In fact, they were completely at ease and ready to have a good time.  Willing to try just about anything to make their day special...even with those (Brayden) who did not speak or offer much feedback on their own.  Brayden played lots of games.  He was up for everything his coaches tried with him.
Luke asked if Brayden won the tennis match...he did because his opponent fell asleep in her wheelchair.
Lots of games that many types of abilities could still participate in.  All very well thought out games and opportunities for fun.  Carnival games, sports, even dancing.  And some (Brayden's class) needed a little stimulation break...or a power nap so we headed outside for some photo ops.
Game time finished and the dance party started.  Coaches and the kids showing their moves with the Cha Cha slide and more.  Those in wheels where pushed around for their dancing.  The Heritage High School Mascot even made an appearance.
Brayden with his coaches
But wait, the special day was still not done.  There was an award ceremony.  Each school was called up to the front for each child to get a medal.  Lots of clapping , cheering and Heritage HS staff to encourage them as well. 
And a pizza party for everyone (or time to attached those feeding pumps).
Absolutely wonderful experience for kids that may not have many opportunities for such fun.  The staff at Heritage staff and high school volunteers were thoughtful and intentional to make this day what it was...amazing.

Wednesday, April 9, 2014

Need I say more

The shirts expresses Brayden's thoughts and behavior towards school.
Some day (hopefully soon), his feelings towards school will be better. 
He does have some good days...

Monday, April 7, 2014

Those Seizures

Four seizure medications (plus other meds):
And the new addition, Klonopin

Brayden's seizures have increased since coming off the ketogenic diet.  We knew is would happen.  His neurologist knew it would happen.   Coming off the diet and he is growing...changes to medications need to be made.

At first we increased his Lamictal and Phenobarbital.  That took the edge of the seizures for a bit.  But then the last few weeks, he would have multiple seizures in the evening (4-6 seizures).  And then days with multiple seizures in the morning and evening.  And sometimes the seizures would look different than his typical ones.  Thankfully the seizures were short, not major trouble with breathing and he would recover quickly.

Ugh, I hate seizures.  I hate seeing him have seizures.  But the balance of a tolerable amount of seizures (as if any amount of seizures is tolerable) to being completely snowed by medication...hard to find the balance.