I may have been told more than once that I talk too much. So to spare my family and friends much turmoil, this blog was created. Tales of Wonder. Tales of Woe. Often of heartache and love. Stories about my special needs son and my spunky daughter. Moments of Joy and Hope and stories about what I would do differently if given the chance. Stories that only I can tell. Here you find a little of everything. And you will want to return for more.
Friday, July 20, 2018
More Than Anything-Josh's 19 Week Update
A brief update about Josh. Josh has been struggling with an extreme equilibrium imbalance for 19 weeks. Unable to drive a car, unable to work, Josh spends his days working on Vestibular Rehabilitation Therapy. He moves from couch to dining room chair to floor to bed and back again. He rests when he needs to and tries to keep his brain engaged by putting a few Legos together when he can. In the past two weeks, Josh has lost a crown and had to sit through having it cemented back in. It was quite challenging for him but he did it. Then the following weekend, he developed even more pressure in his head and was diagnosed with a sinus infection, put on heavy duty antibiotics and is struggling with the harshness on his stomach. He also sat through challenging renal scans to check his kidney blood flow. This was very hard and uncomfortable as he had to hold his breath and doing so makes him feel as if he is going to pass out.
Yesterday and today he spent the mornings at the U of M meeting with specialists for testing additional Vestibular and Neurological functions. These tests were endless, horribly uncomfortable with noise, sound and motion and made Josh feel terrible. Josh received some very unexpected and difficult news today. After completing two days of extensive testing, it has been discovered that Josh has extensive Vestibular Weakness and Impairment on both sides. We originally were told only one. There is no known cause at this time. It could have been present all along on the left side and Josh may not have been completely aware of it because he has always been deaf in that ear. His body has always compensated for that hearing loss. When Vestibular Neuritis settled in the right side, it threw his entire Vestibular system off track. There is additional Vestibular Therapy that Josh can do and will do, but there is no guarantee that Josh will ever get back to where he once was. (From what we understand, if only one Vestibular Nerve was damaged or impaired he would have better chances of recuperating. Because the impairment is bilateral and his condition continues to deteriorate, recovery is even more challenging.
Next Tuesday, Josh will undergo additional Audiological Testing at the U of M and then see the Neurologist who is the best of best. She will review all original and additional findings, discuss options, methods of possible treatments and help us get a better idea of what life looks like for Josh going forward. The goal is to get him to the point where he can eventually drive a car and possibly return to work. But the immediate goal is to find him some relief from the constant dizziness, the overwhelming reaction he has to light and sound, and to get the anxiety under control. (92% of VN patients struggle with extreme anxiety due to not being able to function at even the basic of levels on a daily basis.)
Thank you to each of you that have continued uplifting Josh and our family in your prayers. Thank you for the help that has been helping around the house and in the yard. Thank you for toting my daughter around town and for enabling me to take a step away once in awhile. Thank you to those who have helped drive Josh to and from appointments so that I can take care of the kids and get kids to and from school. Thank you for meals and thank you for praying with us. Thank you for helping us as we know we have asked for a lot. These days are long and difficult and we feel loved by the community that continues to encourage us and serve us. Thank you.
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