Tuesday, July 24, 2018

Josh's 20 Week Update And A Challenging Diagnosis Confirmation

Today was a hard day. To be honest every day is hard. Josh had his final audiology appointment this morning and then met with the Neurotologist. He had two additional appointments last Thursday and Friday also at the U of M doing additional dizzy and balance testing and neurological assessments. Josh's neurological function is fully intact and only one abnormality was found with his eyes tracking. (brain is still resetting while trying to learn to function during equilibrium loss.)  It was confirmed today, that Josh has Bilateral Vestibular Dysfunction. It was stated that he has a complete failure of Vestibular Function. They believe Josh never had Vestibular Function on the left side (deaf in left ear his entire life). Then, when his right side was attacked in March with Vestibular Neuritis, (virus that causes swelling in the ear canal that puts pressure on the Vestibular Nerve) he had a complete equilibrium loss. Unfortunately, because it is bilateral and so severe, there is a possibility that Josh will never fully recover from this. He has been doing Vestibular Rehabilitation Therapy for I believe 9 weeks, and will continue doing so with additional modifications and therapy through the U of M.  He will learn how to modify his physical movements, (arms, legs, neck, head, body) so that the extreme dizziness can be kept at bay. They will try to get Josh to a point where he can someday drive a car and work again. As of right now, the outlook isn't very good for Josh to return to his physically active job at Lund's & Byerly's where he has been for 24 years. Either modifications will need to be made or a new job needs to be found.

This is a lot to take in. It is a lot to process, a lot to plan out and a lot to explain.  Simple answers to common questions.  Yes, please lower your voice when talking with Josh. Loud noises, voices and bright lights set him off.  Yes, he is constantly doing his exercises. No, he isn't up all night, he sleeps quite well.  No, there aren't any meds that he can take to make this better or go away. Thank you, but referrals to other docs are not needed. We have seen the best of the best doctors and specialists.  All 14 of them.   Please do not ask him if the abutment for his vibrational hearing aide caused this or if it should be removed. Specialists know for certain that abutments do not cause Vestibular Dysfunction and complete Vestibular Failure. Yes, he loves text messages and emails.  Phone calls can be challenging. But please continue to text him and let him know that you are praying for him and love him.  Please just give him a bit of time to respond as some days are much worse than others.

What does our family need right now? Continued prayer and love and encouragement. That is what we need the most.  Other things that are super helpful?  Someone to mow our grass or weed wack. Also, if someone can occasionally vacuum out our pool. (I thank you to all the men that come and fix screen doors and locks on the deck door, and mow and weed wack and fill holes in our yard and kill weeds. These are things that I would never get to or even know where to begin!)  Also, if you are ever at Costco, (I am able to get there about 2x a month)  APPLES and honey nut cherrios!  My family , especially Zach, eats a lot of apples and other fruit.  We are constantly running out.  Zach eats about 3 day, and the most common conversation that we have is ... Where are the apples? Didn't I just buy apples?

I thank you for your continued support and prayers. Much love to you all from The Gavin's.


2 comments:

Bags

I was thrilled when I realized I didn't have to race off anywhere this morning. I got the kids up and off to school and then had one ear...