Thursday, May 29, 2014

Special Delivery: Sleep Safer Bed for a BIG boy!

Today was a very special day at our house! A much-needed piece of equipment arrived...a "SleepSafer Bed" for Mason! The main reason we needed a change is that Mason has slept in a standard crib until now but he is getting too heavy to safely lift over the rails to get him in and out. This new bed solves that problem by offering safety rails that drop down allowing us to wheel him right up to his bed and lay him down...much less lifting involved!!
Inside view of a "sleep safer bed" for special needs
The reason we couldn't just transition him to a toddler bed or regular bed with rails is that he needs high rails. The safety rails on standard twins are too short (first we tried him in a bunk bed with a safety rail all around it, placed on the floor instead of on top, but when Mason sits up he can flip right over those short rails. He often arches when excited or upset, and he also likes to try to roll over whatever is behind him, which is dangerous. He isn't tall enough to roll over the rails on his new bed...right now, we have just the bottom rail installed because it is high enough to protect him at his current height, since he is not yet able to get upright beyond sitting.
sleep safer bed with padding for seizure safety

But when he gets taller or can pull up to stand, a second provided rail can be added above it. It looks generally like this with the other rail attached...

Sleep safer bed with manual crank

His new bed has padding all around, which allows him to be safe no matter how much arching or thrashing around he does, or if he has seizures. It has an IV pole built in to hold his formula pump, and an access window in the headboard to allow for his tubing for overnight feeds. There are two cranks that allow the mattress to articulate so we can raise the head of his bed easily to help prevent reflux, or elevate his feet if he needs it. It is also a twin size so it has a LOT more room than he had before to move around!

I think he really likes it!!

He had his first nap in it today and was asleep in under 5 minutes, snug as a little bug!

Best of all, we did not have to pay for this amazing bed! Insurance picked up most of the tab, and Variety the Children's Charity took care of the copay. We do not know what we would do without the generosity of this wonderful organization so if you ever need ideas of great non-profits to support, we highly recommend Variety and we thank God for putting them in our lives!! They have helped significantly in providing Mason's most crucial pieces of equipment! :)

"In peace I will lie down and sleep, for you alone, Lord,
make me dwell in safety." Ps. 4:8

Wednesday, May 28, 2014

EEG Results

Well, the answer is clear on Mason's EEG. It came back abnormal :( It doesn't mean he is having seizures again, but it does mean that it still isn't normal. So, for now we stick with the Trileptal.

In other news, he also got a new pair of specs. They don't look much different than his previous pair but we think he is still as cute as ever! :) Enjoy!

Mason's Mix

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