@*%@!

This morning I was helping Blondie put her shoe on over her leg braces, when I thought I saw her left leg (we call it the "affected leg" in hemi lingo) shake. I barely saw it when it ended. After I put the shoe on she said, "here it goes again." Sure enough, it was shaking - the whole leg -it lasted about 20 - 30 seconds. Folks, my heart SANK. Was this a seizure? Were we joining the ranks of those debating a redo.... so many negative images ran through my head. Let's face it - as far as crummy diseases go, we have been absolutely blessed. Blondie has been the poster child for everything going right (for the most part).

I sent her to school, and talked to the office on the phone to give them a heads up, and tried to go through the day. Why in the world did I send her to school? Well.... if the leg shake is a seizure again it is something to LIVE with, not HIDE IN THE HOUSE with. Kids have seizures - she wasn't falling on the floor, her leg was shaking.... so go to school. Of course I also posted to the yahoo group for someone who may go through this periodically, and got a lot of reassurances that it could just be clonus.

Around 11 I got a call from school saying she had told them several times that it happened again. Now, I had already called the pediatrician and had an appt. for 3:00, but I called back and moved it up. I had also called two different neuro offices, but her current neuro office left me on hold for 30 minutes, and the former one hadn't seen her in 5 years, and getting past the chick at the desk was impossible. Thankfully our pediatrician called the local neuro, got us in, of course he would see us when he knew who was calling (kept trying to tell the chick on the phone that, but she was having no part of it), and so Wednesday we'll go in for an EEG. At some point next week we'll have an MRI. The words thrown around today were "Focal Motor Seizure" meaning one limb involved, and "Jacksonian Seizure" meaning it is possible to have a seizure and stay totally aware (as Blondie was this morning) which is really something I didn't want to know, as that was my secret weapon in deciding if something was a seizure or a weird twitch. It was also pointed out that since we've never seen clonus in 5.5 years then it might not be clonus. Crud.

So still firmly on this roller coaster ride, only now it stinks again. 5.5 years out Rasmussen's still smacks you in the face and reminds you that it thoroughly sucks! I'll let you know what we find out.

**Sorry for no pics - not feeling it tonight.**

Saebo

Two years ago, Blondie's OT and PT went to a training session for Saebo (http://www.saebo.com/). They thought it had a lot of potential for her, but she was big enough at that time, so they used the last two years to develop other muscle groups to support her shoulder and upper arm better, and we actually started to see the thumb move, and some finger movement.

This past week her PT asked if we were interested in being a volunteer for the class so other therapists could learn to use it with patients. I was interested, but OT wasn't sure she was big enough yet, so after some back and forth, we ended up there today. Thankfully both OT and PT went to make sure it was done well so as not to hurt any progress, and I was thankful they gave up their Saturday to be with us.

The first thing the group of OT's did was to fit one to her, and modify it to fit her hand. They used the Saebo reach, and the pediatric digi caps - which were still big, so they lined them with a pad to take some space. After everything was adjusted and she started working, the camera died (wouldn't you know) but thankfully Kathy (PT) was taking video, and my SAINT of an "aunt" brought me batteries AND another camera (then she posted 7 videos to youtube for me).

They gave Blondie a break, and then the second round started. Her hand was a little tired, but I caught some good video. She was able to hold the balls, but only after we switched to foam balls, or slightly smaller ones.

I was pleased overall, but still have many questions. Does the movement stay with her as she grows, or do we eventually lose it? How am I supposed to manage two 45 minute sessions a day with a kid who will get tired of it? There was a lot of refitting done the second time she put it on, how am I supposed to do it, and how will I know if its wrong? There are some real possibilities in the use of this device, but it really is for specific kind of people. It was developed for stroke patients, and it has really taken 5 years of therapy for Blondie to be prepared for it, so not just every hemi kid can use it, so I can't recommend it as the coolest thing to use. I think we'll move forward with it and be a guinea pig for awhile. The next step is to order her own, and see how much insurance will cover (not much, I've been told), but I'm leaning toward making it happen anyway. Brian was very impressed with today's video, and Blondie was very excited about the possibilities, I just hope the enthusiasm lasts.

Then other days, the sun is blinding

I promised that I would be back in the land of positive outlook within a day ---- it actually took two. Today, Blondie brought home the final report of MAP scores.




Here's the low- down: MAP is based on percentiles, not percentages. This essentially means that it shows a ranking out of 100 people performing at the same level on the test. The test is one in which as a person answers a question correctly it bumps them up to more difficult levels, and if incorrect lowers the level. If you read the yellow worksheet on the left it shows that she started the year at 1 percentile in reading - meaning that 99 were better, and then ended the year at 7th percentile (now 93 are better). Yes, I'm still hurting, wishing I knew how to help her brain wire the reading skills. The right hand side HOWEVER, shows she started the year at 14th percentile in math (86 better) and ended the year at 97th percentile (3 better).


I was of course elated, but again shocked. I expected her to perform around the 50th percentile, as that is average, and since she is usually on grade level and not above 50th makes sense. So, I'm thrilled, but the analytical teacher in me is left pondering how this works for her.



Yes, her teacher is truly one of the best I've ever seen - she immediately "got it" when it came to our attitude about dealing with keeping things normal, and not helping. She understood MUCH quicker than others that we want a fiercely independent kid in as many areas as possible. One of my colleagues mentioned that her husband saw Blondie in the cafeteria the other day trying to balance her tray at lunch w ith one hand, and still some how scoop out what she wanted. He wanted so badly to jump in, but knew through the grapevine that she had to work it out. He was impressed with her figuring out how to do it with one hand, and when relating it to his wife she reminded him that this was my kid, so she didn't have a choice.

BUT, is it truly a left brain (logical mathematical)/right brain (creativity, reading) "thing" at work, I'm doubting it. With that logic she wouldn't be singing constantly, or painting everything (hemi friends know the table story). I really think she just has stronger connections in her brain, for whatever reason, at this period in time. I don't know that this will hold forever, but who knows - I was hoping for 50th percentile and look what she did.

Repercussions: Well, I need a plan for summer. I'm going to start in on multiplication early because she is already talking about it constantly (must be starting it in math, but I know 3rd grade is the real starting point). As for reading, we're going to do it constantly, and I think I'm going to make it science based because that is her interest, and use a lot of drawing, and art to help her express herself visually to use as a reminder what she wants to write and communicate. Then we'll read some more, and continue to work on a few contextual strategies to help her gain meaning. Any other ideas?



This is one big roller coaster ride.

It isn't always sunny

Some days, being Blondie's mom is like being steam rolled. Definitely not her fault, don't get me wrong, but I automatically move into protection mode and it isn't always pretty.

Today, two different Blondie related things happened. First was MAP testing. This is essentially a standardized test on the computer. Last fall I was crushed. I sat in a meeting to decide if she should be tested for resource and I saw that her MAP score was in the 1 percentile for reading. Folks, this isn't easy to share - it really isn't. I was deeply shocked.... Here I am a teacher, and I have a kid that I think is relatively on track - just got A's and B's with her report card, so how was this possible? Then I looked at the big picture - she was doing grade level work, although distracted/impulsive"ish"/lacking long time focus and scoring well in class despite it. So today's reading test score put her in the whopping 7th percentile. 7th. That means that out of 100 kids 93 are stronger in reading. So I'm trying to wrap my mind around this.

Yes, she can read, and is getting better. Yes, she can do regular second grade work without resource help. So, at the moment I'm just going to think that her testing skills aren't up to speed, and compartmentalize that way - because any other way is too painful to think about tonight.

After this "news" and now in a "don't mess with my kid" mood, we went to PT. Understand that we (OT, PT, and us) have wanted to try Blondie in a Saeboflex for a long time. Blondie wants it badly - she told me tonight that she wants it so her hand can work again - ouch - that isn't necessarily her reality---- ever. PT is going to the Saebo class again, and had asked if Blondie could be a volunteer. It will be tough, she'll have to miss some time with her grandparents from TX this weekend, but I thought it was a good opportunity to see if it would work. Then PT called OT, and OT later called me....not really happy. She has concerns that Blondie's hand still hasn't grown to meet the measurement requirements, that her fingers still hyperflex a lot, and while she can open her hand and let go of things she is concerned that the spring action of the Saebo, may exaserbate the hyperextension she has. She further thinks that we shouldn't use her in a class, but that if we want to be evaluated go on up to Charlotte. Um.... good point.... didn't think about those things....okay, we'll pass. So now I have two viewpoints and I'm leaning toward the OT (better safe than sorry), but understanding the PT (opportunity to try) and weighing the options.

Left hand holding bubble wand and moving around (gross motor skills).

Sometimes being the mom of a hemi kid is like blowing bubbles. You blow to make something beautiful happen, but it stretches a tad to far and POP! Today, we popped, and I have to restart my "beautiful" outlook again. Don't worry, it will be firmly in place tomorrow. Five years out, and there are still things that hit you in the face.