One of the big challenges we had this last couple of weeks was working with the school district on setting up Aimee's IEP. After I last posted, Ed and I sat down and wrote out detailed emails to the school on why we needed them to work with us to provide Aimee with full one-on-one therapy with certified therapists in order for her to be academically successful. Shockingly, after a few exchanges and disagreements, it worked! Once we firmly declared our position and were able to back it up, it was almost like the therapists, teachers, ect suddenly respected us. Each one emailed me back a different response, but they all said how impressed they were with our advocacy and how right we were. Odd.
Last Friday, 7 different professionals came to our house (and 1 via skype) to write out goals and settle the final wording of her plan. It was amazing and so much better than I could have envisioned. In fact, the one therapist that was most intimidating at the last meeting, had jumped on board with our plan. She was so energetic and excited with the long term goals for Aimee. She has high hopes, things that I never pictured Aimee being able to do. She is such an experienced therapist that I am tempted to believe in the hopes too. One of them being that in several years, Aimee will be able to use a motorized wheelchair that is controlled by head motions. Of course, this will depend on so many things, yet, just knowing that there are possibilities like that available to her has gotten me excited again.
The main goal we set for her to reach by her 4th birthday, is to be able to use a switch (like her 'more' button) that is laid in front of her from a prone position (on her belly). The goal is for her to be able to be up on her elbows, lean over to one and extend the other hand to the switch. This is a HUGE GOAL. Somehow a year doesn't seem like enough time with all that would be involved in getting Aimee there, but she has really made big steps this past year in her desire and ability to hold her head up...
All that to say, in the last few weeks, my whole perspective has changed on the school working with Aimee. They are now totally on her side and rooting for her to progress. Totally amazed that we chose to be a bit confrontational and have seen such a big response.
We got the results from Aimee's second sleep study. They determined that with a 50% increase in the inhale pressure, as well as the backup pressure (the one that is triggered if she doesn't breath for a certain amount of time), that her sleep quality would improve. So this week home care came over a couple of times. They adjusted the pressures and brought over about 10 different masks to try out. The one we have been using fits her really perfectly, but causes skin breakdown on the bridge of her nose after just one full night of use. Hardly any of the masks fit her little nose or her nostrils, but there was one that might work. We used it for 4 hours last night and so far, no permanent damage. Hoping for positive changes this time around!
I took Aimee down to the Center for Pediatric Dentistry for her check-up. It was really, really not worth the drive. They brushed her teeth with a regular toothbrush and used a paint brush to put some fluoride one her. I had to ask questions to get them to tell me how her teeth were looking, ect. Really hoping to find a dentist closer to us that will see kids in a wheelchair.
Had to go into Audiology to get new ear molds made again! While there, it was decided that it is time to have another sedated BAER exam done to see if there have been any changes in her hearing over the past 1 1/2 years. We will take her in for that next month.
We had a check up with the GI department and mentioned that the site around her feeding button had been leaking a bit and seemed to be indenting her skin/stomach muscles around it. Since she first got the button in 2010 we hadn't changed the size, so they took it out and used a measuring device to see if the length into her stomach needed to be changed. It was a bit nerve wracking because they couldn't get the measuring device out of her when they were done. Telling me it had never happened before, didn't really make me feel better. They did finally manage to get it out and decided to up her button by 2 sizes (from 2 cm to 3 cm).
Neurodevelopmental gave us a referral to the Durable Medical Equipment department for a car seat evaluation. She is so tall that she is on the biggest settings for her current seat. We knew from the experiences of ordering her bath chair and her wheelchair that it would take several months to get a request through insurance, so we decided to pursue it before we needed it this time. :) Hoping our new, not so great, insurance company approves the request.
This Wednesday I met with the local Social Security office to determine if Aimee is eligible to receive Disability Benefits. Apparently, what they neglected to tell me during the 3 previous conversations, is that these benefits are a welfare program. Once she is 18, we can apply for her to receive them as an adult, but for now, she doesn't qualify due to our income being above poverty level. Would have been nice to know before pursuing it further.
