And The Time Just Keeps On Ticking

On the way home from swimming lessons tonight Avery announced that she was glad I left Jordan in the hospital, because Jordan always cries when I'm supposed to be doing something with her (Avery). I tried to talk about it with her, but she's decided that she doesn't need a sister anymore, and she's fine with Jordan staying in the hospital forever.

Who can blame her? After 19.5 months of playing second fiddle to a complete needs kids, she is finally ruling the roost. Total attention from all directions. It did make me a little sad, but I understand the context -- she's 3.5 after all, and does consider herself to be the center of the universe. And she'll get over it when Jordan finally does come home -- next week, perhaps.

I don't even fully believe her, either. It must seem like the greatest thing in the world to be the one-and-only for awhile, but the balance of the family is off, and she can tell, too. She's really become quite dramatic. Tonight she was "crying" for ice cream on the way home from swim lessons, then exploded with glee mid-cry when she remembered there were cookies at home on the counter (note: she didn't get any, because she hardly ate her dinner before swim lessons). It was pure drama. I suggested she try out for one of neighbor Jaynie's plays, but she said she's too little for that right now.

Amazingly, Avery's comment wasn't even the worst part of my day. The worst was a visit to the Providence Child Center for 2 hours this morning. The PCC is a long-term pediatric care facility for severely disabled kiddos. They also have a small number of beds for short-term treatments (13 to 90 days), like starting the Ketogenic Diet. We have no intention of sending her there, but in case we're ever run over by a bus or something we do need to have a backup plan for her. So, I am filling out 20 pages of forms to send in so she can be in their files, just in case we ever have to call on their services.

So, that was the worst part of my day. The best part of my day was eating a sit-down dinner with Devon & Avery, then taking Avery to swim lessons. And sneaking an hour-long nap at the hospital with Jordan sleeping on my tummy -- just like we do whenever we get a chance (which isn't often these days).

We're still waiting for authorization from the insurance company for the home nursing visits we need in order to get Jordan out. Apparently there was a corporate merger recently, and they are having difficulties getting the systems to work together, so that's why the insurance case manager thinks it's taking so long to get approval.

I guess we should be thankful that she's getting such great care for the time being, especially since she's having more and more seizures every day. Today she had one where she screamed and grimaced at the end, and it kinda freaked me out. I ran into her neurologist on the floor today and told him about it, and he's all gung ho to get her onto Felbatol for seizure control. Now that's a scary drug; it's major side effects are Aplastic Anemia and Hepatic Failure. Yikes!! People used to die on Felbatol -- but he assures me they monitor it very closely these days. I can see that adding daily trips to the hospital lab for blood and even urine draws. Fun fun. Damn seizures.

On the not-so-medical front I'm going to give Acai a chance. There are many anecdotal stories about it stopping seizures. A friend in North Carolina gave her almost-exactly-like-Jordan daughter Acai juice one day months ago, and she's never had a seizure since. I bought a can directly from her! I'd rather do that than Felbatol! I've also started giving her CoQ10, which also made a big difference in Sarah's development, but with this hospitalization in the way, she only had a few doses and in that short time we hadn't seen any improvement. Her last supplement is Mucolyxir -- to try to stop the snot. Still not sure if that worked of not. It seemed to for awhile. I'll pretty much try anything with her now, especially when I hear success stories from kids who are actually somewhat "like" Jordan -- and there aren't that many that I know out there.

Now, for the best part of my day tomorrow: Avery/mommy day at the hospital, and my sister Jill day at the hospital -- she's flying in from Palmer, Alaska for a week to help us out. It should be a good day, even though Jordan won't be coming home at the end of it. We'll make the most of it there with her.