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.

Getting It All Out

It was a very long, frustrating day today at the hospital. Chaos rules when dealing with insurance companies. I got out my frustration by crying for a good couple of hours. Then I met up with Avery for swim lessons (after a 1 month break), and she was getting out all her energy in the pool, and then with the hula hoop.

I'm so frustrated with the red tape. I really just need someone who can help me get things done -- I've had enough hugs & "it's tough out there" to last a life time. You wouldn't think it would be asking too much from the people who do this as a career, but it seems like they're just as beat down as I'm feeling.

Jordan's still in the hospital, and probably will be for a few more days. Devon is in Anchorage for work. So, it's just "the best team" tonight -- me and Avery. It's nice to get to spend time together, just Avery & I.

A Family Affair

Okay, it’s a little late, but what can I say – 9 days in the hospital have been getting in the way.

The Pend Oreille county fair is like Christmas for the Driver family. Every August it’s a family affair. Kids showing their animals, sewing, cooking, & making crafts. Parents volunteering as 4-H leaders, and department superintendents in barns all across the fair. At one point my aunt Linda counted 34 Drivers on the fair grounds at one time – and there were probably more in other corners.

Avery fit right in! I hardly saw her. She was all over the fairgrounds, with cousins, aunts, uncles, and family friends. Almost everyone figured out who she was without an introduction, claiming that she looked just like me at that age. And I know what they mean -- I saw tons of kids I could ID by remembering their parents when we were kids.

Avery in her "kickers" during the rodeo warm-up. I thought she was SOOOOOO cute in her boots it was crazyUncle Jon Paul & his steer Jeff at the fat stock sale. Avery helping Randi & Jon Paul, pushing grandpa Gary's cow Pixie up the milking standAvery couldn't wait to give the animals a walk. Here she is with uncle Jon Paul & JeffGetting Jeff ready for the fat stock sale
Uncle Jon Paul's girlfriend Randi let Avery take her lamb for a walk before she went out to sell himAvery helped aunt Jessie bide the time waiting for her turn to in the arena at the fat stock saleAunt Jessie & Buddy at the fat stock saleHangin' out with uncle Jon Paul
Aunt Jessie showing her lamb, Buddy
Aunt Jessie & her pig during Fitting & ShowingI'm FREEEEEE!!!!! Jessie's pig went a little crazy, and was heading right back to the barn!Lots of fun things to do -- jumping, sliding, swinging, dancing, just to name a fewI loved these evening shots -- check out the shadowsBooty shakin'Grandpa Gary (farmer), Avery (pig), aunt Jessie (lamb), and grandma Kay (goat)
It's hard to tell that Avery was terrified of Smokey the Bear. She was looking over her shoulder all day on Saturday, and kept telling me that "Smokey the Bear is too big for her"
Jordan got to pet aunt Jessie's lamb, too. Of course, Buddy was more interested in eating part of the Kid Kart than getting petted.
Aunt Jessie in the pen with her lambs
Petting the sheep with her new friend Rachel (aunt Jessie's best friend)Avery's first attempt at "mutton bustin' "
Devon called these sheep the "Lance Armstrong" lambs
Getting royal treatment with grandpa Gary & his special cart, loaned to him for this year's fair. Sooooo sleepy after long days at the fair.

Holding Pattern

We're still waiting for our insurance company & the nursing agency to get sorted out, so Jordan is still in the hospital getting suctioned every 2 minutes (or less if she is sleeping or if the Robinul has kicked in). Her seizures were worsening, so we increased her Tranxene, and although the frequency is about the same (~5 an hour), they're much milder now. I really don't feel like we're gaining any real control, and we're going to have to come up with something else sooner rather than later (VNS? Ketogenic Diet -- still no dietician in town).

As for me, I need to go get a tetanus shot tomorrow morning, thanks to a couple of scrapes & stepping on a nail during demolition. I can't remember having one since the fall of 1995, when I nearly lost a finger opening a can of cat food for my cat Louie.

"Devon's Outhouse"

Here are the Before pictures (U-G-L-Y, and you can't smell the musty smell, but trust me, it was there): During demolition
We don't even want to know what that stuff was. It was under the wood below the pipes that burst almost two years ago during the upstairs bathroom remodel. Thank goodness it's gone now. Framing for the former blank space. I don't know why there was 1 foot of unused spaced drywalled away from use, but there won't be anymore!
Look out, shower! Devon's got the saws-all. The whimpiest hammer ever? After: All nice and clean. Now, I guess we need to find a plumber. . . .
This bathroom is next to Devon's office, so now it's known as "Devon's Outhouse"
The remnants