Jared got fitted for his wheelchair on Monday, much like the wheelchair he is using here currently at BIR, it's called a tilt and space. We are told the process for ordering a custom wheelchair fit to his needs and body usually takes a couple months, so we are hopeful and praying come that time, that Jared will not need this kind of wheelchair and will be able to use something that is able to be loaded in any kind of vehicle where he can ride in a seat like before or even better, not need a wheelchair at all.
The chair he is needing now requires a wheelchair van with a lift where he would remain in his wheelchair. When he can get to something more low profile, we can look at something that collapses and can go in the trunk of a vehicle. I joke with Jared that I would hate to have to sell HIS jeep to get a van for him! So continued prayers for that strengthening of his trunk and neck to be able to sit up on his own.
He did more walking using the exoskeleton this week (sorry I don't have any new videos of it). He has been wearing his AFOs more throughout the day during his therapy sessions and still working on swallowing with ice chips and water. We are seeing more movement in his right hand, thank you to the botox, casting and the splint. These are all things along with the stretching and therapy he has been getting from his OT, Natalie that are making a difference. We also saw a change in his energy levels this week, his doctor changed some of his medications and we are seeing it as positive changes for Jared.
We have hit that point where insurance is saying that Jared has "plateaued" and they are fighting us to not continue his coverage at Baylor. On Friday we found out that insurance was not going to cover him from Tuesday, May 24th, we prayed for a solution and for a path for more time, after a peer to peer consult between his doctor and the insurance company, he did receive coverage through Tuesday May 31st. So we will need those continued prayers to make it to our discharge date of June 6th. From here we are praying that insurance approves for him to go to the next step of his rehab journey at a transitional rehab for the next 3-6 months or depending on how long Jared needs.
Now all of us that are with Jared know that he is not at all plateaued, he is still making progress, though they may be small steps they are still progressions. So per our usual throughout this journey we are aways fighting for Jared for more time, coverage and resources to be available to him. Small things to doctors and insurance such as helping getting dressed or undressed, standing on his own when he is being transferred to the bed or his wheelchair, brushing his teeth and combing his beard, putting his hat and glasses on himself, looking down at his watch when we ask him what time it is... these are all amazing things to us! These small things are leading to much bigger things, he just needs time which has been our battle cry since day 1!
Prayer Requests for this next week:
Insurance coverage for here at BIR until 6/6
Insurance coverage for transitional post acute rehab at PATE
Jared will continue to progress with WALKING and TALKING
We will be able to make the needed modifications to our home in order to get him home when the timing is appropriate.
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