Miracle Monday

Parenting Grayson this summer has been really hard- emotionally. We celebrated when we hit August 1 because we had made it through a whole month without a hospital stay- our first hospital free month since December! So the past month Grayson has been stable- he’s had several seizures, still vomits a lot, but no real emergencies or scares. That part has been nice.

What’s been hard is that he never truly bounced back from his illness in late April. The seizure he had that day lasted 45+ minutes and his fever was really high. I don’t know what lasting impact that had on his body and brain, but he really hasn’t been the same since. I haven’t written about it much because it’s just so painful- it truly felt like my Grayson was slipping away. He wouldn’t make eye contact and wouldn’t respond to his name. My mom says she felt like he was totally in his own world and wasn’t even recognizing people he knows.

I know miracles happen every day, and I would never doubt that God could heal Grayson, either completely or in small ways. What I had started to doubt was that he would. It just seemed like Grayson was regressing quickly, and we were going to have to accept it.

Then we started Grayson on a new medication (the one that is super expensive and insurance has yet to approve). About two weeks ago and 30 days of the medication, he started coming back. He’s definitely engaging more, propping himself up in a semi-sitting position, and trying hard to communicate with us. I’ve said a million times how much music and singing connects with him; well, this weekend, he started singing along with one of his favorite songs, “Down by the Bay.” Watch the video and listen closely- you can definitely tell he’s mimicking and you may even be able to make out a few of the words.

I’m truly counting this as a miracle. Oh happy day!


8 thoughts on “Miracle Monday

  1. Oh my goodness, amazing! First off love his smile, I can't help but smile back, and that's awesome singing and mimicking. I totally heard some very specific word sounds. What great news that the new medication is helping him to come back to you!!

  2. Oh Elizabeth. That movie had my in tears (my drips were falling, as Isa would say). Happy tears. You can't totally hear what he's singing. What an amazing accomplishment. I'm so glad he's been better and is getting better. Yay!

  3. Oh gosh, right in the feels! LOL. Like everyone else, I'm sitting over here crying. That was absolutely beautiful! So glad that the new medicine is working so well. Now I just wish the insurance would pay for it…

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