Chloe's Days

Chloe's New Wheels

Chloe has a new tricyle, and as you can see, it's a very special one. It has a seatbelt, support for her waist, straps for her feet, and a cushioned bar to help her steer. It can be used with or without the bar to pull her, but as she learns to use the pedals herself, that will be really helpful. Look how good her posture is -- her seat is at the lowest level, so she'll be able to ride it for many years. Here's a one-minute video showing her first ride:

Chloe Lost Her First Tooth!

Yes, Chloe lost her first tooth -- and she REALLY lost it. It came out while she was at home with a therapist, who noticed that her mouth was bleeding a little. Chloe didn't seem to be in any pain, and we noticed that one of her front bottom teeth was gone. We looked for it -- either for a souvenir or the tooth fairy -- but it was nowhere to be found. I've been trying to get a photo of the new gap, but the best I could do was this video of her laughing. She even seems to be pointing to the spot where her tooth used to be.

Tricking and Treating

We got an early start trick-or-treating with some of Chloe's 5-year-old friends. Chloe, Amy, and I all wore hockey jerseys as an easy costume, and Simba came along. It was fun going as a big group, and then we came home early for Chloe's dinner and bed.

The group

Pre-Halloween

Today Chloe had a Halloween party and parade at school. Unlike her small preschool, this was a full-blown dance party with a dj. One by one, each grade marched around the basketball court with their teachers, and I was disappointed that the school- and community-based children like Chloe were identified separately. So instead of marching with the other kindergarten students, Chloe marched with the other special-ed students. They did get a nice round of applause from the other students and teachers, so that was nice to see. But if the goal is inclusion, it seems contrary to single out the special-ed students like that.

Chloe's "costume" was an Asian outfit that someone gave us a long time ago. It was very practical and soft, unlike many traditional costumes.

Working on coloring, with "block" crayons that are easier for her to hold. She still has very little interest.

Chloe's favorite costume? This little boy who dressed as the Fruit of the Loom grape guy, with balloon grapes.

Chloe's on the Go

We love watching Chloe run. The people who own this big yard share it for the neighborhood's Octoberfest -- and it's the best spot for sledding when it snows.

Walking Simba

This week is the first time Chloe has ever held the leash to walk Simba. To be honest, it has a lot to do with her interest in the leash itself, but it's still great to see her walk her dog.

Octoberfest

Chloe had a good weekend, including spending part of Sunday at the annual Octoberfest in our neighborhood.

Starting the day in a great mood.

Walking the dog.

Simba joined the rest of the family on the hayride around the neighborhood.

The Corn Maze

At first this 52-second video clip may seem pretty boring -- following Chloe as she walks through part of the corn maze at Butler's Orchard -- but pay attention to a few things. First, Chloe has been so healthy lately that we felt comfortable letting her walk (a few times) on her own -- without using her backpack, helmet, or holding her hand. Second, her stability is excellent. She was navigating uneven terrain and following the winding path perfectly.

This video is self-explanatory -- Chloe laughing while playing in the hay. She's playing with the "tail" of her doggie backpack.

Sorry about the quality -- I took these with the camera, not the camcorder.

A Great Fall Day

If you wonder what Chloe's best days are like, today is a good example. She woke up, ate her breakfast, and was in a good mood. She went to Sunday school and participated in all the activities, including quietly sitting on the floor for circle time and at the table for an arts project. She came home and had lunch, then took a LONG nap. Then we went to Butler's Orchard, a pumpkin patch with a Halloween festival that's become a family tradition. She rode a pony, played with hay in the barn, walked through the corn maze, and happily posed for a lot of photos (see below). Then home, dinner, bath, and bed.

In a good mood before we even pulled out of the driveway:

Exploring the hay:

In the corn maze:

Getting a drink after conquering the corn maze:

In the barn:

Fingers Crossed

Chloe continues to do very well -- just two seizures in the past nine days, and even happier and more energetic and playful. Today poses a challenge to this streak. Chloe got her seasonal flu shot, and she's had bad reactions to her past few vaccinations. She was very brave getting her shot -- not even a whimper, compared with a boy before her who kept yelling "I DON'T WANT TO DO IT! I DON'T WANT TO DO IT! I DON'T WANT TO DO IT!"

Things Are Looking Up

What do Chloe's mood, Amy's mood, Mark's mood, and Chloe's school performance have in common? They're all more positive when Chloe's seizures are under control. We (and our doctors) can't explain it, but Chloe had a bad September but is now off to a good October.

She had 66 seizures in September, her worst month since May. But since Sept. 30, she's had only two, and both of them were while she was asleep. She's full of energy, she's laughing and smiling, and her teachers and therapists all report she's doing well. The last time we made a change to her medicine was Sept. 17 -- maybe it took a few weeks for her to adjust to the change. Or maybe it was something else. I wish we could explain it so we could keep things the way they are, but at least now things are much better.

An Update

By popular demand, here's a brief update on Chloe. We haven't written in a while, because Chloe hasn't been doing very well. She's having several seizures every day, and we don't know why. It's not uncommon for her to have them in the morning, at school, and in the early evening. She's not sick -- no fever or anything else that would reduce her seizure threshold -- and her blood work from her last visit to the doctor in August looked fine.

Her mood and energy are improving, so that's good, but we're feeling kind of helpless because we can't figure out what to do, and our doctors don't really know either.

Next week we have an appointment with Chloe's teachers and our advocate. While a 4-to-2 student-teacher ratio would sound great to most parents, we think Chloe needs one-on-one instruction to be safe and to learn. Her teachers are still trying to determine how to connect with her, and her therapists think she's feeling stress.

More photos and updates soon. Sorry for the delay.

First Week of School -- Happy It's Over

School did not begin on the same happy note that camp did this summer. Chloe had seizures all four days she went to school -- and the other day she stayed home because she had two strong seizures in the morning. On Wednesday, she had a seizure while eating lunch and hit her cheekbone on the table. The next day, she had a full-fledged black eye.

The beginning of the black eye:

At least we've "initiated" her teachers and the school nurse about Chloe's seizures. Even when she's doing well, they have to know to be on guard at all times. We've talked to our doctor about why Chloe's having daily seizures again. Her temperature is a degree or two higher than usual, so we think she probably has some kind of mild illness without other symptoms. Of course, things got worse after she had a DTap vaccine, so we're suspicious about that too. (Particularly because she also got sick after her MMR vaccine back in April.)

Our doctors strongly recommend getting the swine flu vaccine (which is actually two vaccines in one) as well as the regular flu vaccine, because they say someone like Chloe would get hit harder than other kids if she did get the flu. And there's a new report from the CDC that kids with existing medical conditions should be the first to get the vaccine. (I wrote about that on my special needs blog and added some other interesting articles.)

Here's Chloe waiting for the bus on her first day of kindergarten:

Video Flashback: Chloe Meets Simba

Technology has come a long way since I started this blog in December 2003. One feature that was added to Blogger in the past year is the ability to upload videos directly (instead of the cumbersome process of uploading to YouTube first). So expect more video here, starting with this flashback from almost exactly two years ago, when Chloe and Simba first met.