Friday, March 16, 2018

Meet My Sweet Zebras

Today, Jamie from My Sweet Zebras is guest posting on Sunshine and Spoons! Jamie is an supermom taking care of her two little zebras, and I'm excited to share her family's story with you.

With no further ado, here's Jamie!

Meet My Sweet Zebras

Hi there! I’m Jamie from My Sweet Zebras. Before 2016, I thought Zebras were just black and white striped animals at the zoo. I had no idea that medically speaking being ‘a zebra’ was even a thing. Zebras are similar to one another but unique; each with their own set of stripes. I like to think our story is like that, similar but unique.
I have two boys, wild and rambunctious! Seth is 9, he is on the Autism spectrum and he’s a sensory seeker! Sebastian is 6, and he is a lover of life! They keep me on my toes for sure, but I wouldn’t trade it for the world. When Sebastian was 4, he kept having what we thought were growing pains. Initially starting in his legs, the pain spread to his back and neck. After about 6 months of tests, x-rays, warm baths, and doctor visits we landed in the ER. Sebastian woke up unable to get out of bed. He said his legs hurt, his neck hurt and the pain was going down his arms. Our pediatrician wanted a CT Scan of his neck. While not much was done at that visit, this is what got the ball rolling. This was our first look into the world of Ehlers-Danlos Syndrome. From that moment our lives changed forever. In the next 3 months we saw rheumatology, neurology, genetics, cardiology and started Physical and occupational therapy. Genetics found my husband and both sons had a clinical diagnosis of Ehlers Danlos Syndrome, as well as markers for Classical type EDS. Seth has a variant on the gene associated with cEDS and we are awaiting results from the rest of us.

Cardiology cleared them of vascular EDS but when screening Seth, they found a hidden congenital heart defect called AAOCA (Anomalous Origin of the Coronary Artery.) This is the second leading cause in child and adolescent sudden cardiac death. Looking back there were things that make sense now. Sebastian was a really floppy baby, he reached milestones late, and he had a leg length difference that was caused by overly tight muscles around his hip. Seth is extremely hypermobile and he is always looking for deep pressure sensations, cue the sensory seeking! Remember those unique zebra stripes? EDS affects the boys in completely different ways. Seth is very toned, his knees have subluxed but for the most part his joints are stable, he is very flexible and this includes his stretchy skin which scars funny. Sebastian lacks muscle tone, despite being as active as he can be, he has chronic pain in his joints, nerves and muscles, and his skin is velvety soft.
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Who would have thought growing pains would have brought us here, to a diagnosis of Ehlers Danlos Syndrome? Our lives have been crazy since, our calendars are filled with therapies and doctor appointments, our home is filled with medicines, creams and equipment trying to prevent pain. Seth recently had open heart surgery to correct the defect that was found. He is healing great and we are hopeful that the EDS won’t have any impact on his healing and moving forward.

Sebastian is in therapy, and we have been told he will need to be in some sort of physical therapy for the rest of his life. Recently with Seth's surgery, we took a break from therapy and we have seen the impact of stopping. Sebastian works really hard, and some days are better than others. Some days, he has trouble sitting up in bed and other days he is full of smiles instead of pain. A recent visit to his pain management Dr has him scheduled for another MRI, this one to check for Tethered Cord. We aren’t sure where EDS will lead us next, but we’ll go there together. I’m thankful we found out what it was early enough to make a difference in my boys’ lives. Sebastian is able to get the help he needs, and Seth’s heart condition was caught before it caused any damage. I tell Sebastian he saved his brother’s life.

Our lives have changed so much and our normal is way different than normal, but it’s ours. And we will get through it one day at a time. If you’d like to follow our story you can find us on Facebook at My Sweet Zebras.

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