We have had quite a busy month since my last journal entry.
Jim resumed all areas of rehab and started vestibular therapy as well. 
PT - Jim was worried that he had regressed during the time away from rehab. Once re-evaluated, they determined that was not the case. :) They jumped right back in where they left off. Over the past month he has used the walker quite a bit, a cane and some free walking with only a spotter holding the gait belt for safety. Their focus has been walking and balance. His monthly eval showed improvement and his PT said he was really pleased. They will begin communicating with Jim's vestibular therapist also to incorporate some of the exercises he does with her into his PT sessions. 
OT - At re-evaluation there was a slight decline in coordination and strength in his arms, especially the right. That arm has more severe ataxia and a tremor. 
Jim has also been experiencing some shoulder pain in that arm. He and his OT incorporated some posture modifications into his therapy. He has shown improvement at his monthly evaluation in OT as well. Due to the combined PT and OT visits and the insurance company refusing to cover more than 40 combined visits he will be doing OT only  once a week from this week on. This will give him more PT visits as walking and balance is a priority. 
Speech - Vital - stim therapy seems to be going well. His speech therapist has him try to eat or drink during the sessions and that has been going good. Unfortunately, we are beyond the wear off time for Botox so Jim's jaw is a bit worse than normal. So food choices are limited. 
Vestibular therapy - Jim meets with his vestibular therapist once every 2-3 weeks. Since my last journal entry he has met with her 3 times. At the end of each session she emails me what they worked on and gives Jim a list of exercises to work on at home with me (or anyone else willing to assist). We try and incorporate these into our daily routine. The exercises are meant to re-train Jim's vestibular system to improve vision and balance. She has been so impressed with the improvements he's made in such a short amount of time. 
Also in the mix of all that rehab we have had ENT visits in Petoskey, labs and a visit with his Primary care Dr. 

Some more good news. After hours on the phone with insurance and Mayo clinic, appeals, letters from me and Jim's neurologist at Mayo and a review of his medical records, our insurance company overturned their denial of Jim's Mayo visits. In my appeal I requested a 90 day extension of our previous policy as a continuation of care. I expressed the need for Jim to have access to specialists in multiple areas and that that was in the works but was taking time to do. Jim's neurologist made a compelling argument that Jim was young and has shown improvement. They are pleased with his progress and cutting off this necessary treatment would hurt him long term, make his disability more severe and cost the insurance company more in the long run. They granted the 90 day extension, which expires March 1st. 
We got the letter Friday and I got right to work booking appts with the rest of his specialists for the last week of February. The decision brought huge relief to me and lifted a bit of anxiety I had. It must have shown because Jim asked me if I was happy all my hard work paid off. :) I definitely am. I am sure he is also. 
Jim's neurologist also submitted a referral to UofM. The plan is to start receiving care there, but also communicate back to Mayo as needed. We haven't heard from UofM yet, but our Care Manager at Priority Health inquired with them and was told they are booking into June for new patients. Ugh. 
If that is the case we won't be too far off from his normal 3-4 month rotation. I am going to try to be optimistic :)

Otherwise, everyone has been doing pretty well. Sophia went on a class trip to Italy and Greece. Jim and I booked this trip for her over 2 years ago when she was in 8th grade. The trip was delayed multiple times because of covid. Unfortunately, Sophia tested positive for covid the day before departure. She wasn't having any symptoms but they are required to test before boarding the plane. Her and another student were placed in a quarantine hotel for 7 days until they both were negative. Her teacher also stayed as they needed an adult with them. It was definitely an experience for her...and us! But she made it home safe and sound.