The support from everyone here at The Club has
been so amazing! I wanted to share the latest Elliott update written by Sue,
last night 9/20/22.
Steve and Ell made the trip to Helen DeVos Children's Hospital today for some follow-up appointments. It was all GOOD, GREAT actually! His eye surgery in early July has produced some really astounding results. His pediatric ophthalmologist is so thrilled with his progress. That muscle strengthening/correcting surgery did its job and then some. His eye alignment looks nearly perfect, and she is really happy with his ability to track in sync with both eyes. His double vision is nearly nonexistent which is so much easier for him. The pressure and swelling around the left optic nerve has decreased (still from surgery on 12/30/21), but his eyesight has not improved.
He has vision loss in both eyes, which of course has been such a heartbreaking pill to swallow. But he has accommodated so well, and is learning to live his life to the fullest even with the discrepancies with his eyesight.
Elliott also saw the endocrinologist today for a medication review, several blood tests, growth analysis, etc. The team is happy with his growth and assured him there’s a lot more to come. The combination of growth hormone and other prescriptions to aid in his pituitary function has transformed his body. He has strong, healthy body mass and he’s growing taller each day. He’s gained much needed weight, 2 1/2 shoe sizes, and 3-4 inches in height. Elliott has started PT at POMH to teach his body how to deal with this rapid growth, and he loves it. It’s another step to healing. To say that we are proud of him is the absolute biggest understatement in the world. His determination, courage, strength, patience, flexibility, grit, tenacity, and HEART…god, his heart….everything he is and everything he does has brought us to our knees in deep, humbling gratitude. For his soul being assigned to us, for his ability to keep all of us afloat, for his every waking moment.
It’s not always easy…the injections, the meds, the appointments, the travel, and of course HS woes, missing sports, navigating schoolwork, and going solo to Homecoming, ugh. But there’s always those silver linings that keep us hanging on…our family, friends, medical teams, his supporters, the one friend that insisted he got to HOCO with her, her date, and all the gang. It is ALL a part of his journey and we get to watch it all unfold.
The worries, the sleepless nights, the tears, AND the wins, the good test results, the positive MRIs, the friends who know when we need a hug, and when he needs an invite. Here we are, doing this. And here he is, kicking butt and pushing forward with heart and soul. Love ya, El!!! #ElliottStrong #BeElliottStrong @BeElliottStrong
