Friday, October 31, 2014

In the Village

There is nothing more Brayden loves than to be with friends and family, outside, being pushed around.  Could Halloween in the historic Waterford Village be any better?

Thursday, October 30, 2014

Fall Fun, Special Ed style

Parents were invited to the classroom for some activities.  I never quite know how this will go since Brayden can get upset that I am there, because he wants me to take him home.  Thankfully he was very content that morning.
Try to toss the bone in the basket.
Make a spider web.  How cute is this wrapped around all of the wheelchairs?!
After the fun was done, it was time for Brayden to go in the stander.  I cannot believe how well he does it in and how ridiculously tall he is.

Wednesday, October 29, 2014

Brayden does Trunk or Treat

and he will take candy, please.

We all headed out for a trunk or treat.  First, we had to take some pictures.  When I got home I realized Brayden's little cousin put his hand on Brayden's lap for all of the pictures...such sweetness!
Luke could only stay for a little bit since he had to leave for football practice (thus the football "costume").  Luke did not want to miss out on any candy so Brayden was happy to finish up for him.  He really did like to hold the candy and he did get quite a bit (too bad eating any of it is not in his future).

Sunday, October 26, 2014

His stay at Jill's House

As always, he loved it.  Especially the pool.
As we were picking him up, his Uncle Matt winding down from his run at the Marine Corp Marathon.  Jill's House raised a good bit!  Brayden and his buddy made his Uncle Matt a special card.
And of course big brothers were there to help.

Friday, October 24, 2014

Jill's House Marine Corp Marathon

My brother, Matthew, is running the Marine Corp Marathon (he has run other marathons in the past) as part of the Jill's House team.
A few weeks ago he was talking about the pre-race dinner at Jill's House.  I quickly realized that was the weekend Brayden was scheduled to be at Jill's House so we were able to join him for the dinner.  My brother, his wife, Brayden, Carter and I rolled into the Jill's House.  Race is Sunday!
After the dinner, I stayed to get Brayden ready for bed (he was so relaxed but ready to sleep) while the others waited in the lobby...apparently supervision is required because here is a text I got while working with Brayden and the Jill's House nurses...

Tuesday, October 21, 2014

So we have to make this happen...

The BIPAP machine was delivered.  The goal is to get him comfortable with the mask over the next couple of weeks; practice wearing it, so that when he has another sleep study in a couple of weeks he will not be to resistant to wearing the mask.

HA!  Our best bet is that he gets a lot of medication at bedtime so we will put the mask on once the meds start to kick in...I did not tell them that we have been working of brushing his teeth for 7 years...he is not a fan of things touching his face for any reason.

He will not wear the mask at night until we get the results of the next sleep study.  That study will find the necessary adjusts for air flow with his BIPAP.

Friday, October 17, 2014

Sleep Study Results - He runs a Marathon

Well, we knew Brayden's quality of sleep was poor but today we saw it on paper.
  • The sleep study showed, 29 awakenings.
  • Only 3.4% of his sleep was REM sleep (the good quality deep sleep).  It should be at least 30%.
  • 435 episodes of oxygen desaturation where his oxygen dropped by more than 3%.  Also, his oxygen rate varied from 68% - 98% during the study, it should really only be in the 90s.
  • Lots of other numbers that show he has poor sleep.
  • The doctor basically said that he runs a marathon every night, his body is working really hard trying to breathe properly when he is sleeping.
So technically during sleep, Brayden has:
  • SEVERE Obstructive Sleep Apnea.  Not obstructed by his tonsils and adenoids because he had them removed years ago.  He has very low muscle tone so his airway collapse when sleeping and he also has central sleep apnea where his brain is not telling him to breath all the time (just very brief episodes).
  • Hypoxemia - poor oxygen flow in his blood because of poor breathing while sleeping.
  • Sleep Related Hypoventilation - not quality breathing and getting rid of the CO2.
Brayden will be put on BiPAP for sleep.  We will introduce it to him for the next few weeks.  Then go in for another sleep study for them to properly adjust the best numbers/rate on the BiPAP.  The equipment company will be calling us soon to set up time to deliver the gear.
Regulating his sleep improve his seizure control, weight gain (minimize it please) and basically improve his quality of life because he has been quite tired for sometime.  It looks like it will take a couple of months to adjust and get to where he needs to be.

Tuesday, October 14, 2014

You will NOT take my picture

No matter, how many times you try to make me smile.
Thus the reason we have never purchased Brayden's school pictures.  But we do get to see the proof...for a nice laugh at his stubbornness.  I could just squeeze that face!

Friday, October 10, 2014

His face on a school morning

Even though he doesn't speak words, his face can say it all.
His nurse sent me this picture when he riding the bus to school.

Saturday, October 4, 2014

Does Brayden like the Fall?

Not sure he is a fan yet.  Trying it out with pile of leaves on a windy day.

At least he is not trying to tolerate fall at football...