Saturday, November 29, 2014

Home made Winter Wonderland, the indoor kind

While we were off looking for a Christmas tree to cut down, in the freezing cold.  Brayden opted to stay home (actually he did not have a choice; the snow was melting, making the ground very squishy, no way could we have pushed him through the farm...and it was freezing cold).

When we came home, the house was quite.  Brayden was in his closet.  Brayden's respite worker had created a special place in his closet.  His very own Winter Wonderland, which he was enjoying much more than he would getting a tree.

Lots of lights, lots of lights and music.  Brayden was loving it.  It would be nice if we could make it permanent...but he needs to where clothes (despite the no pants in these pictures) and we need to get to his medical supplies.  But we tried to keep it up.

Thursday, November 27, 2014

Brayden's Thanksgiving

 No food involved for his Thanksgiving, only lots of cuddles and more cuddles.

Wednesday, November 19, 2014

Class fun

Brayden's class has the sweetest volunteers (I think 4th graders).  They help Brayden and his classmates participate in all kinds of activities.
 Find the hidden feathers and acorns.  This boy with Brayden has the best way with Brayden, I just like to sit back and watch him interact with him.

Friday, November 14, 2014

The New Car Seat

After many months of waiting (since February), Brayden car seat arrived.  His current one did not offer him any support and we worried that is was actually harming him, after all he did break his femur getting his leg stuck in the car seat arms...thus needing a new car seat.

I looked over the car seat option online, after the equipment company gave us some recommendations.  We needed full support, good padding and ability to slide him in and out.

This beast arrived.  It is massive.  The equipment guy installed it behind the drivers side, which is where Brayden has always been in the car.  After he installed it, I realized that Jeremy and I could not drive the car very well because the driver's seat had to be moved quite a bit forward to accommodate the car seat and Brayden's long legs.

So we had to move the seat to the other side of the just might not wanna be the person in the front passenger seat if you have long legs and Brayden is along for the ride.

Brayden has been quite comfortable in it, not fighting it the way he always did with his previous seat.  Good thing because this one is intended to last a very long time.

Thursday, November 13, 2014

BiPAP sleep study

It was the night for another sleep study, this time with the BiPAP machine on.

Arrive at 7:00 p.m.  Jeremy and I running Carter and Luke back/forth; I get Brayden ready then Jeremy arrives with Luke for me to take the boys home for the night while Jeremy and Brayden hunker down at the sleep clinic.

I work on all of Brayden normal night routine while the tech is setting up (poor woman did not seem warned/prepared for how involved Brayden is).  Then comes time to put on all of the monitors.  Wires and monitors on the legs, arms, chest, neck, face and of course all over the head (and wrap his head really well so the monitors all stay in place)...and we haven't even put the BiPAP machine on yet.

Brayden "tolerated" the placement of all the monitors wires.  By the time we needed to put on the mask, he was exhausted from his effort and his nighttime medications were kicking in.

Oh how I hate to put him though these things.  We cannot explain things to him, we try but do not know how much he understands; other than he is being tortured and mommy and daddy are there.  How can we tell him that is to help understand what he needs to sleep, his sleep quality is so poor that he needs this...

He looks so pitful.
He did sleep relatively well.  The tech came in several times throughout the night to make necessary adjustments.
The study ended early in the morning and Jeremy brought him home...time for a shower to get all the junk out of his hair (the same stuff from EEGs) and all of the tape residue off his skin.
In a couple of weeks, we will find out the best BiPAP settings from this sleep study.  Then his machine at home will be set and he will start using it at night.