I have been thinking about Gabriel’s first seizure a lot the last couple weeks. Amazed, that it has been six months since Super Bowl Sunday. That day is forever etched in my mind. Gabriel was holding a purple dry erase marker and standing by his easel when he called out “Mommy”, fell on his bottom, tried to stand back up, then fell down again shaking. What I would give for the first prognosis of ” just a febrile seizure, nothing to worry about, may never happen again” to have been true.
The last couple days have proven, once again, that we are in the fact fighting, “The Beast” that is doose syndrome. G has been having tonic clonic seizures (grand mal) every morning around 6 for the last 4 nights, last night he had one of the worst we have seen in months at 3 a.m and it was 5 minutes long. Today he had tonic clonic, and small drops as well 2 seizures with small tremors during which he seemed to have some awareness. He also had a few seconds where his speech was gone (this is one the hardest things for us, especially his daddy) It is quite disheartening after a long good streak to be back to what feels like square one.
We have his 3 month diet follow up appointment on Wednesday. A month ago we were very optimistic that we would be totally seizure free by now and get to start pulling meds. Now we have no idea where things are going or what the next line of treatment will be. Gabriel continues to be a very reluctant eater this week. We had to syringe butter again a few days when he ate only the cheese portion of his meal.
When I wrote the title for this blog a song called “healing begins” popped into my head. So Looked up the lyrics:
This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark
Not that Chuck and I haven’t both been totally broken within 100 times during this process, but this particular set back is hitting us really hard. It is not just a physical healing I am praying for. I am praying for a healing of my broken heart, my husbands broken heart and my precious baby’s brain (being a child his heart still seems about perfect!).
Here is a youtube link to the song for anyone interested (thanks again for joining in this blog ride that functions as a form of therapy for me).
I’m praying for you, sweet Amy! I hope Wednesday’s appointment sheds a little light and hope.
Thank you friend! We are wanting some good solutions 🙂 Today has been better.
Oh, Amy, my friend! I’m praying for you guys. Hoping to make it up to see you sometime over the next month while I’m at my parents’ house.
I hope hope hope you get to come see us too! It will be great!
Susan Brown said:
Thank you for sharing your journey, Amy. You are so articulate and candid with what you are going through, which I imagine is as difficult as it is important for you. Thanks for being you – the mom, the wife, the caregiver, the friend and – to me – the inspiration. I feel privileged to follow your blog.
I am privileged to have you following our blog. Hope your sweet girl had a great 2nd birthday!