Real challenge.......

Hi ALL,
It has been a while .Just getting use to new Sammy's schedule without much help.Family is it.
Many new questions came up during few month after our insurance plan changed. Sammy have not seeing his doctors for month since new insurance we are not able to use medicar to transport Sammy to his appointments. Unfortunately most of his specialists are in Children's or Children Memorial professional building in the city-which is nearly 30 mi away,even when we had extreme emergency we still was send to Children's-no one else will help .When I ask about our new plan coverage why we was denied home care-they pretty much told me to take him to hospice facility for good. This will never happen -not in our family .
Not too long ago our friends visited Sammy and concerned about Sammy's mobility and handicap access we finally recognized a real need of a car that will have wheelchair access and all the equipment to safely transport child that lost all cognitive and physical functions.
Facing possibility of urgent care or another extreme circumstances really got us thinking -how will we move or transport Sammy ? Anyway ,friends are thinking about a way to help.......
In the mean time ,Sammy is enjoying Family time. He have had many good days ,but some very tired days too when he sleeps all day long.Nights have been a challenge too. It seems he switched day with night,so we constantly visit him making sure he is comfortable.
Its hard to believe that Sammy have been with us almost 2 years after transplant and keep fighting with our prayers and his strength.
Stay warm,stay healthy,
Sincerely Sammy and Mom