Thursday, December 15

LISD Transition, EEG, etc.

Yesterday was one long day! We started the day at the Leander ISD transition meeting, which lasted a solid two hours. It went about as expected, unfortunately. I was still holding on to a little bit of hope that they would see Bryce, read his history and realize that he needs summer services regardless of their asinine bureaucratic nonsense. No such luck.

Mostly she said that even if we could qualify him for services what he received would be pretty much worthless anyway. And the only way to qualify him would be to stop all therapy for six months and then assess him to show that he's regressed. WHO IN THEIR RIGHT MIND WOULD DO THAT TO THEIR CHILD IN ORDER TO RECEIVE 2-3 MONTHS OF SERVICES?? It's completely absurd and infuriating.

As it turns out we may have found a way to get him private therapy through Medicaid, which if it works out (fingers crossed) for all therapy disciplines would be an absolute saving grace! It would mean that I can get Bryce all of the therapy that he truly needs for the entire summer without having to have a meltdown at Leander's district offices.

You'd think this would make me not care so much about this ridiculous system to which we dutifully paid taxes to for 7 full years before Bryce was born. Nope. I can't get past how the whole system seems to be set up so that most people don't get the services they need and are entitled to. Unless you make a boatload of money, happen to be a lawyer or both you can pretty much guarantee you're not getting a fair shake.

So that's my rant for today. Sorry guys!

After just enough time for a nap and lunch I took Bryce for his EEG, which ended up being another two hour ordeal. He was so good though. Here are some pictures of him getting his probes attached:

Don't think for a second that I don't count my blessings EVERY SINGLE DAY! I may have to put up with a lot of crap when fighting for Bryce but good gosh, he's {SO} cute & sweet AND he smiles through it all. I don't know what I'd do if he wasn't so easy going!

That doesn't mean that he sat still for the 25 minute test. Here's a fun game to play on a rainy day. Get a two year old, stick a bunch of cords to their head and then see if you can get them to be still for 25 minutes and not pull any of them off. It was a challenge but we got it done!

I kept trying to watch the screen and see if I could see anything:

I saw a lot of things that looked really scary to someone who knows nothing (ME) but finally gave up on trying to make any real sense of it. We don't have any results yet but should this week since they wanted to get them before Bryce's botox on Monday morning. I'll be sure to let you all know as soon as I do.

After the EEG, Poppa picked up Bryce to deliver cookies to some of our North Austin clients. Which gave me a chance to finally stop in and visit a dear preemie mom friend of mine whose sweet little Harper had a hemispherectomy last week. Harper looked amazing - all pink and alert and .... so far seizure free! If you can, please take a second to include their sweet family in your prayers and/or blog reading activities: Twingate.

Thanks, as always, for keeping up with the Molines.

Tuesday, December 13

Enough with the Assesments Already

We're running on assessment overload in the Moline abode these days. Bryce has endured three in the last 10 days and though he smiles and charms, I smile and grimmace.

I've just about had enough of people telling me how far behind he is. I know it's their job and I know it's for a greater purpose (setting goals, developing therapy plans, etc, etc) but enough is enough already.

Believe it or not, I didn't come here today to rant, rave or complain though. I came to update. I thought our sweet and supportive family and friends would want to know what's in the pipes.

Tomorrow morning we begin our endeavor to get Bryce into Leander I.S.D.'s Early Learning Environment. I think I've explained before that this is a school district program for children with disabilites. It should provide a classroom environment of children who are 50% disabled and 50% normally developing for up to 4 hours, 5 days a week. The idea is that the kids get their therapy there as well as an opportunity to learn from and be motivated by the other 50%.

So tomorrow we'll start what I imagine to be a fight. While I'm (too?) sure that Bryce will qualify for the program and find it likely that he'll qualify for their "full time" schedule, I'm anticipating a show down over what services he'll receive this coming summer. Since he'll turn 3 after the end of the school year and ECI will not be allowed to provide therapy services after his 3rd birthday.

I'll attend the information meeting tomorrow. Likely schedule his assesment for early 2012 and prepare myself for battle. Wish me luck because from what I understand, I'll need it.

Other than stressing about Bryce going two to three months without therapy, I'm stressing about an EEG tomorrow. I called Bryce's neuro last week after Dr. Fasci, the developmental pedi who specializes in neurology, saw him do his little spacing out number the previous Friday and suggested we let his neurologist know. They called back and said that they wanted to do an EEG before his next scheduled botox injections - which just so happen to be bright and early on Monday morn.

I'm feeling confident that the EEG will show no signs of seizure and that we're all just erring on the side of caution. But stressing, none the less.

So we'll do both tomorrow and hope that Botox goes as scheduled on Monday because we're seeing increasing signs of the last dose wearing off. Bryce is a little wobblier when sitting due to the increasing tightness in his legs and hips. And his right hand is staying more and more fisted, more of the time. It's so hard to see how frustrating this is for him. It was one thing to watch him struggle with "righty" before he ever had real use of it but a whole other thing now that he's had a couple of months of decent use.

I'll do my best to keep you all posted as we receive the results and as I know more about what to expect from the school district.

Until next time, thanks for checking in!