Thursday, January 22, 2009

Today was our first day back to Bible study since Christmas and we woke up nearly 30 minutes late. It was tempting to just skip but I didn't. I woke the kids up, quickly fed them breakfast, got them dressed and we were out the door. As soon as I had a minute to actually think I realized I really didn't feel very good. I actually thought about turning around. I'm so glad I didn't though. We started another Beth Moore study called, "A woman's heart, God's dwelling place" and it's about the Tabernacle. Already I loved it! We did a study last year from Beth Moore on Daniel that was also great. I love Beth Moore! She makes something, like the Tabernacle that doesn't sound all that appealing to discuss honestly, very, very interesting and insightful. You realize how there's something to learn from everything in the Bible even if we don't think it pertains to us.

I have the opportunity to start another study by her on Esther which I would love to do but I'm not sure I'd keep up with all the homework! Not to mention it's hard to find a babysitter. We'll see though! :)

Tomorrow Emeric has an appt. in Fargo with a Pulminologist to discuss the Aspiration issues. I'm not sure our gameplan will change but we'll see. It's more to get to know someone and see if we like them so if another issue does arise we have someone. And the closer the better!

I've been thinking a lot about energy consumption in relation to Mitochondrial Disease and I've talked to quite a few people after hearing comments from people that they don't see how Emeric could possibly have a problem with making and using energy because he's typically so hyperactive!

A woman whose son also has Mitochondrial Disease told me they've been told that hyperactivity or even just general busyness can be a way to mask fatigue. It's as if they can't slow down because they'll get too tired. You know how kids are when they're overly tired and it seems like they're just bouncing off walls? Emeric has always gotten tired more quickly than other kids his age. He recently stopped taking 2 naps a day and I've noticed a big difference in his energy level. He'll be playing normally, running around like his wild man self and then I'll stop him to change his diaper. As soon as you lie him down a lot of the time he'll close his eyes and you can tell he's tired. More recently he's been stopping a lot throughout the day, asking for his "nigh nigh" and laying down.

Last week his PT was here and she hadn't seen him look so good in a long time. She said his eyes looked differently and he just looked good. And then 10 minutes later he was asking for his blanket, wanting to sit on my lap and sucking his bottle lip. Kristin his PT said, "Wow, I can't believe how tired he looks now. His eyes even look different!" In a way I was glad she could see it because sometimes I feel like I see things that other people don't but at the same time it's sad because it has gotten more noticeable.

Here's a video I took of him yesterday. He just sort of spaces out and rests and then he'll get down. I guess it's just sad to me because I've seen a noticeable difference in his energy, even just subtlely, and it always has me wondering what's in store. He's only 2 after all. I know all kids get tired and if he were just getting tired before nap time that's one thing but this is within less than an hour of waking up.


A day in the Life... said...

I hope you appt goes well today! Let us know how it goes.

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