Sunday, September 25, 2011

long overdue update

It's been a while since I posted, but not a whole lot has been going on. Aidan started Kindergarten at the end of August. He is in an EC class with 3 other children of various ages. I believe he's the only kindergartner. So far, I guess he enjoys it. He's been sleeping a lot during the day so it's hard to tell.

Over the past few months, we've noticed Aidan's heart rate dropping very low for brief periods of time during his sleep. Since it has been going on for some time now, we decided to take him to see a cardiologist this past Friday. This initial EKG that they did there in the office showed nothing out of the ordinary, but the doctor had a portable monitor placed on Aidan to be worn for 24 hours so that he might be able to see what is going on during the times that we're seeing his heart rate drop.

I'm hoping that it's nothing more than us needing to taper back the dosage of the Clonidine that he's on to control the storming symptoms. We'll know more after the data is reviewed.

Other than that, we took Aidan off of the Ketogenic diet because we didn't think it was having much impact on his seizures and he'd lost way too much weight. He now weighs 37 pounds and he's 42.5 inches long. We're trying to get him back up to 45 pounds so that his surgeon feels comfortable enough placing the baclofen pump that we've been waiting so long for.

In a few weeks, I am supposed to be going to Seattle some other mothers of near-drown children. If you recall, I went last year in November. It was such an amazing trip and I met some of the most wonderful and inspiring women ever. I am still trying to raise the money so that I can buy my plane ticket, but I'm hopeful that I'll be able to buy it in the next week or so with the amount of orders I've had come in for my crochet items.

I'm so sorry I've been so slack about posting new blog updates. Since we have a Facebook page for Aidan, we tend to update that more because it's just a quick blurb and so many people use it. We're so glad that so many people read this blog and have been touched or inspired by Aidan and our story.

Thank you for your continued prayers and support!
God Bless!

~Erin


1 comment:

Leslie said...

Thank you for posting, Erin! It was good to read, in paragraph form, what's going on with him. I saw his smile photos on Facebook this week, they're amazing. Keep trusting Christ with your precious boy. We'll all keep on praying.