Make a Wish

On Thursday I ran Evan to the doctor because he clearly had a sinus infection that wasn't going away.  While I was there I asked to speak to Oksana's doctor.  Her doctor has been with our family since Clayton was born, but now they boys go to a male doctor and the girls go to her.  We are very close to her and she has been an incredible support to us.  When I saw her she told me that she had gotten the genetics report but she was confused why they thought neurodegenerative.  I showed her the picture from Wednesday and she was shocked.  We talked for awhile.  She has a number of kids with in home health care so she said she could help us navigate that when it was time.  She also has a family who lost a child to a neurodegenerative disease.  That family never did get a name for the disease :(.  She said when I am ready she will try to connect me with the mom so I can talk to someone who understands.  I  mentioned to her that if I could find one teeny tiny blessing out of this horrible situation it is that she has always dreamed of going to Disney.  I told the doctor that when we get a diagnosis we are going to contact Make a Wish.  She told me I should not wait for a diagnosis.  She said that she clearly has a degenerative disease of some sort and if we wait too long she may not be able to enjoy the trip.  I sent an inquiry the same day.  I'll let you know when I hear back.

I will see Oksana on Thursday.  She will be seeing her psychiatrist and then I think we will meet up with the rest of our family for some ice cream or something.  I went from fearing her coming home to wanting her home ASAP.  Regional is doing everything they can to get care in our house as soon as possible so we can bring her home.  We also asked the seating and mobility company for a loaner wheelchair.  In the one she has now this is how she sits:

You can remind her to sit up but she can only maintain that position for a short period of time.  We want her to be able to enjoy what she experiences and  you can't do that if you can't even see what you are experiencing!  The loaner wheelchair will help until she has her own because it will have a harness to hold her up.  We are also looking into adapted vans and considering a fundraiser of some sort to help pay for it.  I'm not sure what that will look like, but it is being tossed around.  The van will be necessary though.  The wheelchair weighs 40 lbs and Oksana weighs 70.  I weigh 105.  I can't lift her into the van much longer and she really needs much better support than even her car seat can give her because she has no upper body strength.  One step at a time but there's a whole lot swirling around in my brain!