Colleen’s IEP meeting with the school was earlier this week, and one of the comments they made was that we brought a different child with us back from Boston. I had to think about that statement for a while. Colleen was exploring more. One of her favorite things to do currently is to throw a ball and chase after it. She’s more vocal, which by that I mean she is making different sounds; ones she hasn’t made before, like a “y” sound. And she is showing far more spunky personality. Doesn’t want to be held? She will grunt and try to shove you away. She might not be able to tell us what she wants, but she can certainly express her displeasure!
The most noticeable progress I’ve seen is standing from sitting. On Wednesday night, I was going to put dinner in the oven. She had a disc toy that plays music, and she likes to sit and spin it around because of its shape. Well, she was sitting one second, and then the next, she was standing there! Maternal instinct kicked in as I ran over, praying she didn’t fall over. She can be a bit wobbly, but she spent the next few hours before bed standing up. There were some falls on her butt and some getting down on her own. But she did it over and over. Then she slept for 14 hours!
I’m so incredibly proud of her and the progress she’s making.
Hey there! How’s it going. Life has been busy, but I have some updates to share.
First and foremost, my little girl is 5.. 5!! The days are long but the years are short. Happy birthday to my sweet, sassy and strong little girl. You give the best hugs and have an infectious laugh. Your strength is far beyond your years and I am so blessed to be able to watch the wonder in your eyes as you learn and grow. ❤
It’s Epilepsy Awareness Month! I have had a campaign planned for a while, but my designer brain hasn’t been able to come up with an idea for it yet. I’m hoping that I can have something ready for Purple Day coming up in March, so stay tuned for that!
A few years ago, I heard about the Embrace epilepsy watch. At that point, it was at it’s funding stage but I was very intrigued. As funding progressed, I knew I had to get one for Colleen. So, last year she was approved to receive a watch donated from the Epilepsy Foundation. And a few weeks ago, we finally received it! It was well worth the wait. Bar some charging issues that I’m currently trying to resolve, I am extremely happy with it. I wasn’t sure, at first, if it would be able to detect Colleen’s seizures. Up until that point, she was having silent ones so it was almost impossible to tell. But since March this year, she’s had seizures where her arms jerk. My only consolation in this is that the Embrace can and has caught this type.
Last week we were in Boston for a followup. Her EEG really hasn’t changed. She had a seizure before her appointment that morning and another when we got home late Friday. It’s a challenge to wonder if there were triggers or if it’s just happening. If there was a trigger, I think lack of sleep is high on the list. Otherwise, I don’t know and it makes me so sad. She was fully weaned off of keppra and is now only on depakote sprinkles. She only has room to go up 1 more pill a day on this. Beyond this, I don’t know what we’ll do. This year has not only seen a dramatic increase on seizures, but the type as I mentioned before. I can only hope that maybe as she gets bigger, they’ll eventually cease. But, one day at a time.