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Rays Fight Against OMS
7/2/2016 Latest post:
Rays amazing journey of strength and courage began on November 28th 2014. This was the first day we noticed eye movements and absent-minded behavior. After meeting with his pediatrician, he confirmed our fears, something was wrong with Ray. So after a trip to Champaign, IL, a consult with St Jude Midwest Afilliate, 2 trips to Detroit Children's Hospital, several EEGs, over 75 blood draws, MRI and CT scans of his brain, 7 trips to Mayo Clinic in Rochester MN, 3 swallow studies, several different GI studies, 5 spinal taps, a sleep study, 3 endoscopes, a brochioscope, 3 wrong diagnosis, more MRI and CT scans, another consult with St Jude Midwest Affiliate and 11 months later we got the diagnosis of Opsonclonus Myoclonus Ataxia Syndrome.
What a journey we are on. Towards the end of the diagnosing phase Ray had gone down hill. He was turning two soon and I was starting to panic. I hadn't heard any words. Hadn't had a hug or a cuddle in months. Let alone never got that first kiss every parent dreams of. He was walking like a new walker when he had been walking for a year. Wasn't eating. Had to be on honey thick liquid because he lost the ability to swallow the right way. Seeing your child regress and not be able to fix it is one of the hardest things I have ever done. We prayed constantly for an angel, someone who could figure this out. We prayed for strength to be up all night with a child who had no clue who we were. We prayed for wisdom and knowledge of every doctor or student or nurse who was taking care of him. We prayed that our other children felt loved enough. We prayed for the finances to be able to continue. We prayed for all the brave souls we met on our journey! The saying "God will provide." rings true in our house. He provides strength in times of weakness, he provides comfort in times of distress. He provided us with an amazing pediatrician who encouraged us when we felt defeated, and researched doctors, tests and hospitals for us. Dr. S also called regularly to see how we were and was our biggest advocate. God also provided us with with right specialist! We had met Dr K for a sleep study at Mayo Clinc. He was the one specialist who never gave up, never settled for a diagnosis that didn't explain every thing, and he's the one who figured it out!
Since that Saturday morning Dr K called and explained what he had figured out and that the chance of him having a neuroblastoma is fairly high, things have been a whirl wind. We started Ray on high dose steroid pulses and IVIG infusions. Added 3 more therapies to the 2 we already had. That first week after treatment began we started to see glimpses of the Ray we knew was there all along. He would smile, eat and I finally got my first kiss! I will cherish that moment forever! He has started talking and understanding what we are saying. He has started playing with his sisters and other kids.
Ray will have OMS for the rest of his life. And there's a good chance that he will struggle with it for a long time. I was warned this isn't a 100m race it's more like a marathon. We are 8 months out from actual diagnosis. He is doing so much better than when we began, but he has such a long way to go. The disease is very much still active and the treatment we are on is like a band-aid. We have many ups and downs from day to day and even hour to hour. But we have the Lord on our side who has blessed us with an amazing team of doctors. And we are faithful that He will provide. Our pastor closes our Sunday services with this and it has proven to be a lullaby for a sick child and a calming technique for the rest of the family " Surely it is God who saves me. I will trust in him and not be afraid. For the lord is my stronghold and my sure defense, he will be my savior." These words have encouraged us and shown us that God is in control. Even when things get tough . We pray that we find the right treatment plan to try and stop the disease and preserve Ray's cognitive functions and his quality of life when he is older.