Mom, HOW do you DO that?

Usually if your child looks at you admiringly and asks how you do something you just feel like the best mom in the world. Not so much after this conversation...

I was sitting with Blondie and Cheesie on the couch reading one of their American Girl books out loud. I know T-Rex enjoyed these books when she was in 3rd grade, so in an effort to expose Blondie to experiences other girls her age might have, I'm reading them aloud (scroll down to see past posts about reading).
I'm reading right along, and we're learning how Molly is going to put together a tea party, when Blondie stops me and says, "How do you do that?"

Me: Do what?

Blondie: Keep track of who's talking and make their voice.

Me: Well, I read a lot and when I read I make it into a movie in my head, and when I read I can also remember what is going on in the movie.

Blondie: I can't.

Me: Can't what?

Blondie: I can't remember my movie and read, or read and remember my movie.

Me: We'll just have to practice.


And then I went back to reading aloud because honestly, Cheesie was sitting on the other side of me and her precocious little self was about to jump into the conversation with how she could do what I do, and we don't need to be reminded that our little sister can easily do things we can't.


So then I took Blondie to the bookstore and we bought Henry and Beezus (which cannot be read alone by her, but I don't care because she was interested)and we will find a place without Cheesie to practice reading that probably while we hang out at the lake.


The American Girl books aren't particularly difficult to read, but there is a lot of history in them that the little girls don't have any connection too, so we're using them as a way to start talking about those things. We've learned about bottle caps (and point out coke bottles every time we go to the store), and that people kept gardens like we do, and girls wore dresses pretty much everywhere, and that families had people in a war far away (like the soldiers we handed cookies to), and that kids were sent away from the war to stay safe, and that girls went to camp that looked a lot like Camp Congaree, etc. Then the little girls run go get the millions of dollars were of stuff that resides in our house from the American Girl store, and play tea party, or camping, or bomb shelter (it's in the book).


I like to read books a little above the girls, and while this one isn't tough, I want to pre-expose Blondie to things that other kids just have to hear once. I want it percolating in her head long before she needs it so she isn't playing catch up, and since I know that if I read it to her, or she experiences it she learns it MUCH faster than if I send her off to stumble over words in a text book - so I read aloud a LOT. She also reads books to me, but my goal there is purely word attack and fluency - I'm not even really working on comprehension.


So if you have a hemi kid in the early grades (or any kid having a tough time reading), I would suggest (as a mom, and as a teacher) that you check out your state's learning standards and find out what is going to be covered in science and social studies this year, and start gently offering your child a knowlege base from which to start. It seems to be working with our daughter, but it still hurts that she is starting to understand that she can't do something easily.

Waiting for the Saebo

For those of you who don't keep up with me on facebook, or on the yahoo group, Blondie is fine. What I thought looked like seizures was actually called clonus - muscle temors. I am so thankful I can't even begin to tell you. We were fortunate..... other families however are not so obviously lucky. My prayers right now are with the Hall familyat http://jessiekelley.blogspot.com/ . Their daughter is a few years from her hemi surgery but has been having facial tics with stomach aches and they are concerned about seizures. If you could add Jessie to your prayer list I know they would be grateful.

A few posts back I shared that we had gone to a Saebo class to see if it was even viable for Blondie to try. It was, so we started the process to purchase one. This is pricey, and of course, not covered by insurance. With the help of grandparents we are now waiting for our very own to come in. Our hope was that it would be here when I was off during the summer, but it isn't looking likely. In the meantime, Blondie's OT made this little brace - used only during OT.... to work on strenthening her thumb. She is able to hold onto the little ball, but always needs her thumb adjusted, so we're moving in that direction and working on her thumb.

I'm wanted to post a video of her exercise, but it isn't great, I'll try again Monday morning. Blondie talks through the whole thing and doesn't seem to be paying much attention. This happens a lot - they will have success with an exercise, show me, I'll run for the camera, and then her muscles fatigue.

What I love about the therapists around Blondie, and I'm sure this is true everywhere, they have a knack for knowing where we want to go, and how to move her there. If we can't have the Saebo right away they will engineer something to help strengthen her hand. We've really been moving toward this for about a year or so. The therapists took the class, and then started building similar equipment to practice on to see if we could get her to this point. I want the muscles in the arm to get stronger to minimize the difference in length between her arms - muscle growth helps bone growth. Everything we do in OT is moving toward that goal.

@*%@!

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.

Tie a show with one hand - faster

One of the ways people find our blog is the "Can you tie a shoe with one hand" search, and it sends them to my family site where I have some old therapy things. About two weeks ago I shot video of Blondie tying her shoe (better than the photos I published over at the other blog) and THEN HER NEW TRICK.... a double knot.

So here is the tying shoe part. Please notice how short a time it takes her to do it now - some days one shoe is way under a minutes - slower than a two handed kid, but faster than me with one hand.



Here is the double knot. It isn't the greatest video, and I don't know what she does with her fingers, but she can do it. This is new, so it is definitely something that takes some time on her part. Soon she'll do it faster, but now its still something she has to think about - BUT I don't have to do it for her now.



Enjoy. Next post soon - I have more pics of ideas for playgrounds.