Equipment

So, again part of the reason I'm writing this blog is so that people in similar  situations can have some detailed accounts about our process and possibly use it as a guide of somethings to expect.  I will take any info can when it comes to things like this!

I am super concerned about Paul's sleeping situation and having safe comfortable place for him to sit after surgery. We have affectionately referred to Paul as "the sleepless wonder" for years… There's

Versa Form Pillow (half mattr

no chance on God's beautiful green earth that that boy would sleep on his back. Guess how  he's going to have to sleep  after surgery while in his cast… uh huh, on his back.

He has some problems with vestibular system and he basically panics on his back… His hands fly open and he starts crying like he is afraid.  Occasionally, he will fall sleep sitting up and I think that's going to be our best way to tackle the sleep problem. Of course, he has very little trunk control and can't hold himself  up when sitting… He will just slumped over.  So upon the advice of his physical therapist I  purchased a VersaForm pillow ... It was majorly over-priced pillow (like $350.00 with accessories) that you pump with air and will mold to his body.  I purchased the largest one they make… 32 x 40… In hopes that it will hold him up as he falls asleep in and inclined position. He has a sleep safe bed which the inclines … I think medical Craftmatic bed and I am hoping this works.

We've also trialed a Peapod seat for him. I'm totally in love. He NEEDS this seat ... I won't have to worry about him rolling off the couch or bend down to the ground pick him up ... he is safe, comfortable and secure ...  only problem is the price.  If I told you, would would not even believe me.  Ok, twist my arm ... it like $4200.00.

So,  we have to submit it to insurance

The super expensive seat that you NEED to send up a prayer for Paul
to get in time for it to benefit him after  surgery!!!   Look!  He actually
fell asleep in it!! 😍😴

and wait to see what happens.  I have a backup plan but not much time.  It would take a miracle (which I am not ruling out) to get it anywhere close to his surgery date (April 10).  We have been waiting for probably 9 months for children's to get a demo of the P-Pod chair and got the appointment to evaluate P in it as soon as we could ... I just hope it we can get the paperwork pushed through ASAP.  I am searching for a grant (as a back up to my back up) that might work to purchase it bc I am desperate.

And finally, Paul is sick and on an antibiotic for an ear infection and sinus infection.  His doctor thinks he will be OK for surgery as long as this doesn't develop into anything worse.  So, as much as I don't want to do it, I am anxious to get on the other side of the procedure and not have it looming over us anymore.  Prayers welcomed.