So I’ve been debating the creation of a blog…to keep everyone in the loop, to bring awareness to Grant’s conditions, and to share my experience as a mom of a medical mystery to help others. I will also chronicle the struggles of frustration, guilt, second guessing, over-analyzing, and the balance of being a mom, a wife, working, and making sure the house doesn’t look like a complete disaster. So here we are…day 1. It will be short and sweet because Baby Grant could use prayers and I will use future posts to explain his history.
He is 16 months old today. Tomorrow he goes for his 4th and 5th brain MRI, his 2nd lumbar puncture (spinal tap), and his 1st lower spine MRI. That alone is enough to make anyone, parent or not, flinch. Luckily it will all be done under one anesthesia procedure, but that also means he will be under for longer, and our anxiety ridden wait for him to get to the recovery room is that much longer.
The strangest feeling is the internal battle of hoping for answers, and simultaneously not wanting abnormal results.
Thankfully he isn’t sick, he doesn’t have any limb paralysis as he has had in the past (to be covered in another post), but we simply noticed that on Friday, he woke up and couldn’t keep his balance. Yes, he’s a toddler, and with low tone and as a fairly new walker, his balance isn’t perfect…but this was different. He was falling over as if he was dizzy shortly after taking a few steps. He was wobbly when walking without falling. He was just different.
With his history, we know different. We know when something is off, and sometimes it’s nothing, and other times it adds to his list of mysterious symptoms with no etiology. We were told by our neurologist to head to the ER, it could be nothing…but better safe than sorry. After the team consulted, they decided to admit us and keep us until Monday to observe over the weekend and schedule scans for his sudden dyspraxia. He has gotten a bit better periodically, but still isn’t himself.
As much as we would love to avoid additional tests, we realize it’s all part of the process at this point. With our experience, all will come back with a normal result, and we’ll be left with yet another mystery symptom. There is a chance of the cause being inflammation resulting from an infection which would clear on its own, so we’re holding onto hope that it resolves soon. Given his history, however, they want to make sure they don’t miss anything more rare. The strangest feeling is the internal battle of hoping for answers, and simultaneously not wanting abnormal results. Each day my mind and heart battle between which would be better, and there honestly is no right answer.
So for now, we ask for prayers and good vibes. Not necessarily for an answer, but for understanding, regardless of the outcome. For continued hope that he will progress instead of regress, and for the doctors and nurses involved in tomorrow’s events.
Let your faith be bigger than your fear.