Thursday, May 14, 2015

School, Summer, and Operation possibilities


So, right now Elena is having her Standard of Learning tests in school. For anyone not familiar with these test, this is a nationwide standardized test administered in public schools for grades 3 and up. the testing is controversial; the scores do not enter into the (elementary) student's record (they do in higher grades), but rather are used to assess how well the teachers/school are conveying material to students. In other words, it is a measure of the school, not the student. I have taken  few of these; the questions can be quite difficult, and some require more than one degree of inference. The tests are not mandatory, per se; parents can opt out their children--but what they may not know is when they do, the score for that student becomes a zero and lowers the school performance record.

These tests bring out the worst of anxieties in students, and Elena is a perfect example. I wrote about this during her third grade year; she was awash in nervousness and extremely disruptive. Tackling anxiety, quite simply, is going to be a problem for us (with Elena). While I don't look forward to testing, I do think it can be a way to measure if Elena is making progress dealing with her emotions.

Which…is debatable this year. Last night was the eve of her first (out of four) days of testing. She has accommodations in her IEP for extra testing time, but since the test is divided into two days (thursday and Friday) she cannot go over the weekend (or start early) if she needs even more extra time. Granted, she has the entire school day if she needs it (most kids are done in 3-4 hours, with breaks). She is, without a doubt, very articulate in her fears (once she calms down enough to discuss them) but she can be incredibly disruptive when given a lot of attention (our normal reaction is to disengage and let her calm down on her own--she doesn't like that b/c she feels we are ignoring her). After a huge meltdown the eve and morning of the test, I had low expectations for the day.

But, Elena surprised me. I received only positive feedback from her teachers regarding her test-taking. I'll call that a win.


I am trying to get plans in order for the summer. Currently I have spots reserved for both elena and Vivian and Camp Holiday Trails, but I haven't finished all the paperwork yet. I also applied for funding for Elena though the IFSP program (more on that later) an dI'm trying to wait to pay for certain summer things until I hear back regarding the funding. Dealing with heat, mobility, and size (vs. peers) are going to be issues for Elena this year I think. Heck, the heat is an issue for me right now--and I LOVE hot weather. I haven't been able to acclimate to the warm weather b/c I still have a difficult time navigating outdoor terrain. I'll get there.

In case anyone cares, here is a current picture of my "winky face" knee (almost 7 weeks post-op).

My left, your right. Still swollen and hates to bend.

New Op?

I'm currently researching epiphyseodesis (bilateral anterior distal femoral tethering) for Elena. Her main ortho recommends it, and E is scheduled for this at the end of September. In layman's terms, this is referred to as growth plate tethering. Basically they put some sort of splint/staple on either side of the distal femur (maybe proximal tibia?), kneecap side. This will temporarily halt Elena's bones from growing in the "front" of her legs (like mine, shown in the picture above), while allowing the back of her legs to continue to grow--essentially "growing out" of her crouch.

It's outpatient, quick recovery (comes home in some bandages only), slow changes, and temporary. The tethers come out in about a year or so and then she would continue growing as normal.

It seems like a perfect solution for a growing kids with CP. I'm sure it's not perfect, but it sure sounds good. I'll be digging up more information and posting what I find out.

SaHM experiment

My first attempt at making crutch covers! I'm not great with a sewing machine, but I am trying. These are a little snug--I'll probably perfect it with the next few attempts. Better than the hard plastic, and much cheaper than buying them (with no color choice).

Moi as hand model

Pink canvas and orange soft interior