Today is KayTar's last day of camp.
Next week is BubTar's last week of summer. He starts on the 18th. He's going to be a first grader!
The following Monday, my semester starts. I'm taking evening classes once again, because after that hospital trip I realized she will probably be spending a good chunk of time under the weather, and if I take day classes no one will be able to watch her so I don't miss classes. At least if I take classes in the evening, he can handle all minor illnesses and I won't miss so much. 4 nights a week I'll be in class from 6-10.
On Tuesday of that week, KayTar starts school. My little baby girl, in SCHOOL. I ordered her uniforms yesterday. Tiny toddler-sized uniforms!
She also has to restart therapy. PT 2-3 times per week, so says the script from orthopedics. We're going to restart OT at the same time, which means she will have therapy 4-5 afternoons per week, outside of school. Our ortho appointment was kind of a non-event. It went sort of like this:
Dr. Ortho: (after her exam) I think she needs to be referred to a neurologist.
Me: Oh. She has one. She sees Dr. Neuro over at the Blah Blah Clinic.
Dr. Ortho: It seems like her orthopedic problems are neurological in origin, I think we should order an MRI.
Me: Oh. She's had one. She has a sprinkling of small lesions in her brain. It presents like CMV, but she doesn't have calcifications on the CT and they didn't find the lesions early enough to do an accurate CMV test, so we don't know.
Dr. Ortho: Ahhh, that explains that. I'll write her a prescription for PT and we'll just keep an eye on it as she grows.
The End.
The one time I really, really wish she had some sort of one word diagnosis is when I'm trying to explain her to new doctors. It can be exhausting. I have to say LOTS OF WORDS, and then sum it up with, "Well, we don't really know." I'm thinking of putting all her symptoms on a little laminated card so I can just hand it to them when they ask about her history. Then I can just say, "Here, let me know if you have any questions." Although, I kind of doubt I can fit it all on to a tiny little card. The good news is, she doesn't need orthotics or braces! The bad news is, we're cramming A LOT of PT into our already bulging fall schedule.
KayTar is also going to continue her art/dance/music classes at her day camp facility on Saturdays this fall.
Our weekdays will be something like this:
7:55 Take KayTar to school.
8 am Take BubTar to school. (different schools)
8:30-10:30 Spend 2 hours studying. Or cleaning. Or blogging (let's be honest).
11am Pick KayTar up from school.
Between 11-2 Go to Therapy of the Day.
2:30 Pick BubTar up from school.
3-5pm Snack time, homework time, quality time.
5 pm Josh comes home.
6 pm Kyla goes to school.
10 pm Kyla gets home; shower, rinse, and repeat.
On the weekend, KayTar will have Saturday classes, and we've talked about church a lot recently, which will take up a good chunk of Sunday. I'm also kind of looking for an overnight weekend job, which, if found, will promptly take up the remainder of the weekend...those pesky empty hours reserved for sleep.
Toss in a few episodes, the inevitable illnesses KayTar will get from being in school for the first time, some specialist appointments, and the other general drama of the Tar household and you've got yourself QUITE an exciting semester on your hands. Or rather, on my hands.
Fall 2008, the semester that promises to swallow me whole.
19 comments:
Wow. First of all lookie at the response your 25 post got.
I gotta admit it was a good one.
Anyhow Kyla, that is some schedule. One foot in front of the other.
You=superhero! I hope I can be half the mom to two that you are!
You should just print on a card for the doctors,
"Go to http://khebert.blogspot.com. Then get back to me."
You are such a trooper, you're going to be so busy! It's admirable. Don't forget to schedule some time in for yourself, too, though.
Sometimes having a one-word diagnosis isn't any better. When we tell "first timers" that Ben has PKS we still have to go through all of the same explanations so we know how you feel.
Look for something in your e-mail soon. Joan created an Excel spread sheet that we just hand to the docs on our first visit. It may have to wait until we get back from vacation.
In school? At her age? I'm confused. Miss M won't start kindergarten for 2 more years. Until then, it's day care.
Oh yes...the chaos of the school year, I know it well. But, yours is extra special :)
Wow...summer's over. Is the heat going with it? ;)
You guys have QUITE the schedule...and a weekend job???
My goodness!
It does look like you've got your hands full! My fall might swallow me whole, too--can summer be over?
It does look like you've got your hands full! My fall might swallow me whole, too--can summer be over?
wow, I know feel like it is almost Christmas. Hang in there. Hope you squeeze in the sleep and the quality time -and that the sick time is less and less and never.
Can I take a nap now? Wow, that sounds daunting.
Good luck.
goodness. That is a full schedule...and I thought I was running around a lot!
Isn't it amazing the medical things you can retain when needed? I mean, I read your discussion with the doctor and I was like, what?? Yet, I can remember reatining what I needed to when I was married (for my ex's problems) and I can for most anyone else...become a sort of mini-expert on what's going on. I suppose it's because you love them so much, and you want to help so badly in any way you can...
I don't know how you do it. Clue me in on whatever drug you're on. I could use some! :)
Wow!! You do have a busy schedule. One day at a time...only way to go!
Oh Kyla, you need to borrow KC's cape over at Where's My Cape! I don't know how you guys do it!
I don't know if this works yet or not because I've not had the chance/nerve to try it, but I have a number of disorders that are rare, adding up to medical histories being complicated. (One doctor suggested I may have some bizarre syndrome that is unnamed; all I know is I'm bipolar in a very severe and usual pattern; I have strabismus; I have a heart murmur; I have a kidney disease; I have hypothyroidism; I have a kidney cyst; I have a large and unusual birthmark; I've had weird orthopedic injuries; and I have multiple allergies, some dangerous.
I got a flash drive medical alert device. It lets me write as much as I want, essentially, and can be used on any computer without the program (it comes up in notepad).
I'm going to try this at my next gynecologist visit because they use a laptop in the office, but theoretically all I have to do is hand them my necklace and they have all my info at hand.
I bow down to your fortitude.
My left the building years ago.....
I've had some patients with complicated histories write up something that summarizes imaging, consults, etc that is VERY HELPFUL for the provider and saves you some vocal cord action.
You just update, print it out with new visits...
Oh, geez. And I think I'M stressed! If you can get through THAT, you can get through anything, lady.
Post a Comment