Perfectly Ordinary

So much is going on with us these days but is for the most part very routine and ordinary. And I don't mind ordinary, especially in comparison to last month's drama, but it doesn't make for very riveting writing.

But that's all I've got to work with, so here goes:

The boys had swim lessons earlier this month. Did I tell you that already? Surely I've at least mentioned it. I thought Cooper hated the first day, judging by the screaming, kicking, punching, etc. But as soon as we got out of the water, kid you not, he said, "That so fun, Mom." He continued to have a good time the rest of the week, sans further fits even, and I was able to recover from all my bruises :). Jackson really made strides (strokes?) in his ability to dog paddle during his lessons; more than once, he was able to swim a short distance with only his swim buoy (and no adults). He really enjoyed the kickboard portion of the lessons, and, after a (re)introduction to it, he told me, "I want to do it by myself." And do it he did. So proud of that boy!

This week, the boys are going to vacation Bible school at my parents' church. The best part is that my mom is one of the VBS helpers, so it makes it easy for (especially) Cooper to go in since his 'Eenda (Linda) is there. We've enjoyed our quieter evenings at home with the big boys gone, but I'm always ready for them to come home. I love seeing them participate in the songs at the end of the night. It looks like they're really having fun.

One of the really great things going on right now: my mom's sister Leslie has been in town (drove all the way from Michigan) for the last week in order to help with childcare and otherwise neglected odd jobs around the house while we manage Ella's rather busy schedule of appointments and screenings. It has been a huge blessing!

Today, while Leslie sat with the boys, I spent all afternoon getting Jackson enrolled in a Pre-K program through the local public school. Though quite a lengthy process (with enough waiting around time that I was even able to breastfeed Ellie uninterrupted at one point), it was well worth it. I wasn't sure we would qualify, but it turns out that we do (it is based on annual income).

I now have a little less than a month to prepare my mommy heart for my oldest to be gone five full days a week. *sigh* I really thought I'd have another year yet, but the program is free (well, we pay for it in taxes, I'm sure) and a really good foundation for school, so it's great that he has this opportunity.

In the interim, I also need to figure out how in the world to get him there on time. Like, every day. Apparently this is something they expect of us. Who woulda thought? :)

In Ella news: seizure freedom continues--more than three weeks now! (And if you follow me on Twitter, you'll realize that I said it was 4 weeks earlier, but that's because I apparently can't count.) She has her six-month well check-up at the pediatrician tomorrow, and other than a home health visit that is our only appointment this week (a nice departure from last week's glut of appointments). Ella seems to be doing really well, and I continue to enjoy seeing her activity and personality. She is a very happy baby who rarely cries and who is usually consoled easily. On top of that, she's very charming. We couldn't be more smitten.

We've been getting a lot of mail this week in regards to Ella's hospitalization(s). Not too many bills that we owe on yet, but we have seen the total owed for Arkansas Children's, and I don't think it would be an exaggeration to call it "staggering." Since it is very likely that Ella will qualify for TEFRA medicaid, which will cover a lot of it, I'm not really stressing about it yet. We will owe money (we are required to pay a yearly premium), sure, but hopefully not THAT kind of money.

Another thing we got in the mail, just today, was a letter of acceptance to the NORD infantile spasms copayment assistance program. NORD is the organization I have mentioned previously that has supplied the three vials of ACTH that we've used since coming home from the hospital. Up until this point, they have supplied them under "emergency" status, but going forward we are now officially approved for a year's worth of support. It is unclear how this would work considering our insurance never approved "their portion" of the tab, but fortunately it is a moot point since we already have all the medicine we need to get us through the remaining weaning schedule that Ella is on. Even so, it is good to know we are covered anyway. I cannot say enough nice things about this organization; I have no idea what we would have done without their assistance. As I've mentioned previously, ACTH is kinda expensive (gross understatement).

Wanna see what all the fuss is about? One vial contains only five milliliters of ACTH, and it is no bigger than my thumb.


Here it is in its natural habitat.

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