Update on Kaydee

Just before school started, I got Kaydee back into her neuro for a medication change. The Keppra she was on turned her into a starving, raging beast. She was putting on weight like crazy from always eating, and turning this house upside down with her constant tantrums and hairtrigger temper.  I didn't realize it was a side effect of the medication until I was doing a little research about her increased appetite. The tantrums, I thought, were just part of her personality. So I called up for the appointment and told them I couldn't take the side effects anymore.

Because of her usual uncooperative nature in the morning, we were late getting out the door and we had to go all the way up to Salt Lake for her appointment at Primary's. I received my very first speeding ticket that morning. That's a dirty trick, setting up a speed trap at the bottom of a hill. And it made us so late for our appointment, we couldn't get in to see the doctor. But they had compassion on me, knowing where I was coming from and the whole ticket incident and they told me I could wait and they could squeeze us in if there was a cancellation. I was willing to give it an hour or two, and a very nice nurse updated me regularly on the progress. Then, an appointment was a no show - for another PA, so we jumped on it. We got the meds changed, and the one she prescribed only came in capsules, but we took our chances. Kaydee is so awesome about taking them. We haven't had to extract the meds into a liquid at all. And at her follow up appointment yesterday, the PA was very impressed that a 7 year old could swallow pills.

One cool think I have to say about Primary Children's Medical Center (soon to be Primary Children's Hospital) is all the things they have to entertain kids. I don't know if they do this in other departments, but you can often be waiting quite a while in Neurology, so they have lots of things for kids to do: video games, TV, books, toys, a play kitchen and a craft corner. And a volunteer comes in to do crafts with the kids. Lena was with us for the first appointment and she made a beaded keychain and decorated a small purse. Both girls decorated puppets and masks. Yesterday, Kaydee painted a pumpkin that now graces our coffee table for our fall decor.

Soon after that first appointment, I took our little charmer (all the medical staff are enchanted by Kaydee) to her pediatrician to talk about ADHD. Sal and I had come to the conclusion (separately) that maybe medication was the answer for her. She has so much to fight from within that directing her behavior is overwhelming (I think). I think we have found the answer. It's toned her down just a notch to where she can still bounce off the walls, but she is able to focus enough to be getting most to all of her schoolwork done. These last two weeks have just been excellent for her. It was not an immediate improvement, but she seems to be better able to reshape her classroom behavior and learn what is appropriate and what is not. She still has bad days, but they are becoming less frequent. That first week on the Ritalin was pretty rough for us both. The second day, I ended up staying with her for the first hour while she cried and cried. It was so unlike her and so heartbreaking. But her awesome teacher told me it was a normal reaction when beginning and it would pass. For a couple of weeks after that, she had a hard time with separation anxiety, which was not normal for her, but we've worked through it.

Also, in only the second week of school, her teacher approached me with the option to put her in a different specialized class. If you'll remember, she started 1st grade in a mainstream class, but it got to be so overwhelming for her and her behavior deteriorated to the point I was picking her up early  because she was so out of control. We all hated to move her to a different school - we became very attached to her teacher and therapists, and they were quite attached to her. But it was very clear she needed something they could not give her, so in the spring she moved to a school with an accommodated core class. She seemed to make a small improvement, but by the end of the year, I was picking her up early several times a week. Nothing changed much over the summer and she started this school year running, just like last year. When she didn't get what she wanted, she ran. And someone would have to follow her or chase after. So by the end of the first week, she was missing a third of the day of instruction because of the running and it was becoming a big problem because they just didn't have the staff to devote to her. The principal was the one following her through the halls most of the time.

During the second week of school she moved to yet another new school (her 7th since preschool) to an Academic Behavioral Support class. There are about 8 kids in the class and they all have behavioral issues. I have to hand it to the teacher. She has 8 different personalities with all their issues to teach and reshape, and I've spent some time in there and seen what she puts up with and I don't know how she stays so patient. I think I'm the parent that has spent the most time in there and half the kids talk to me like I'm just another classroom fixture. They're all cute kids. One of them seems to get just as excited as Kaydee when she has a good day and he excitedly tells me when I pick her up.

In this class, they earn points throughout the day - up to 100. Last week, she had 4 straight days of 100. We were so proud of her, but most of all, she was proud of herself. Her self-esteem has been boosted to where she has continued her good streak into this week. I was considering anything over 80 a really good day and her scores would vary so much - typically from 40-70, that this good streak has me elated. She is learning how to function in a classroom, but also, we are finally able to pinpoint what works for her and be consistent with it. I fully expect her to have some setback days. Just before her perfect week, she had some of her most horrible days, and I think I'm smart enough to know that things like this can't change so drastically in the blink of an eye. But it's ok. She is making progress and that is the whole point.

Yesterday was her follow-up appointment with neuro. I decided to treat her with a ride on TRAX (our light rail). I just wasn't looking forward to that drive all the way up there in rush hour and I wanted to avoid another speed trap. Plus, I thought Kaydee would really like it. And she did. Most of the hour long trip up there was full of her questions: "does he like trains? why did she get on the train? why he get off the train? why, why, why..." I think she was too worn out on the ride home to ask too many more.  I brought up Kaydee's staring spells with the PA. She'd had them before the big seizure (Kaydee calls it her "see-jury"), but we never thought much of it because they were so brief. After her change to the Zonisamide, I noticed they were becoming more frequent. But I never thought they were seizures because they only lasted 5-10 seconds and you can always pull her out of them with a tap on the shoulder or calling out to her. When she does this, her eyes half close with a blank stare and she looks like she's really tired and she stops what she's doing. They only happen a few times a week. The PA said they were seizures and we decided to up the dosage of her meds. And then it happened. I think everyone who goes to a doctor for a condition hopes the said condition manifests itself during the appointment so we don't look like fools for one, but also so the doctor can get a more accurate picture of what is going on. Kaydee had one of those seizures, and the PA saw it. And she saw how Kaydee snapped right out of it when I asked Kaydee what was going on. Then we upped the dosage a little more. So she's now taking  5 pills, but that is Kaydee's choice. She was given the option to take bigger and fewer pills, but she'd rather stick with the small ones and we are ok with letting her choose since she can swallow them so well. She certainly didn't get that from her mother (I still gag on pills. Thank goodness mine are tiny). Also, she has lost a couple of pounds since stopping the Keppra. Her clothes are now fitting again.

So that is how Kaydee is progressing.

As for me, I realized soon after quitting my job last May that I had pretty much been working since we moved to Utah. I have delivered newspapers, worked at a grocery store and a copy shop, was a leasing agent for an apartment complex and the big 9 year one - managed a storage facility. So I guess it was natural that I was taking an interest every time I saw a help wanted sign, then I would have to remind myself there was a reason I had quit the copy shop. I still have quite a bit of guilt for not being home when Kaydee had the seizure and that the other kids had to take care of her.  I hate that they were going through such a scary thing without a parent with them. On the train ride home yesterday, while Kaydee was quiet, I had some time to reflect and ponder. And I would look down at the little girl with her arms wrapped around mine, resting her head on me and know that staying home was exactly the right thing to do. Even though all the kids are at school full time, there is still much to take care of and appointments and activities to take children to and I'm glad I can do that for them. I'm glad that I had no other obligations to keep me from having that little adventure with Kaydee yesterday, and that I can be the one she gives a big hug and "I love you" to when I drop her off at her classroom. And to see her happy little face when she comes out of school and tells me how great her day was. And that I can talk to her teacher everyday.

And I thought about the interesting relationship that little girl and I have. We had quite a rough start. I don't think anyone really knows that I didn't want her. Deep down, I wasn't thrilled about being pregnant, and was horribly depressed the whole time. And I didn't bond with her like I did with the other kids. But I needed her and she needed me. And though bringing her into this world set me on a very dark path, I learned that it was one that had to be traveled to teach me what I needed to know about taking care of myself and preparing me to raise this special little spirit. I have learned forgiveness, acceptance, endurance and compassion. And I think I can say that I have successfully moved down that dark path and made it back to the light.