Madisen and I attended the MDA Walk in our community yesterday and it was amazing! I had the opportunity to make some very important connections with local vendors of speech, mobility and respiratory products that Keith will be needing in the future. It was a wonderful event and we are so very thankful we could attend and meet other families and PALS that are struggling with ALS and other types of muscle disease.
Unfortunately, Keith was not able to join us as he has been struggling with severe muscle pain in his neck and his upper arms and he has been a bit nauseated, which is making it very difficult for him to get comfortable at night to sleep. These symptoms have been going on for about a week now and we called his Neurologist on Friday to see what she thought could be happening as we are wondering if this is the start of him progressing into the middle stages of ALS. His Neurologist recommended that we go to the ER to ensure his symptoms were not being caused by something else. Our visit to the ER really did not help as they wanted to do an MRI or CT however, Keith cannot lay flat without his ventilator so they were not able to do any tests. They prescribed some pain meds and sent us on our way. He still has not been able to sleep very much so we will be going to the ALS Clinic tomorrow so we can get an idea of what's happening.
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All Our Love,
Keith, Heather & Madisen