More than 8 months after beginning the process, we finally have it! The Taj Mahal of motorized pediatric wheelchairs. It's a Koala by Permobil, and it's PINK! Eden has big plans for adding princess decals, and already calls it her "princess wheelchair."
Considering that she has a difficult time making her body do what she wants it to do, she has a real knack for figuring out how to make things GO. The power chair is no different. She figured out how to get it moving in no time, and was flying over our very bumpy backyard with glee as soon as we got it home.
It makes me so happy to see her able to "run" around on the lawn with the rest of us.
Congratulations Eden! You are a Princess with Power!
Thursday, June 26, 2008
Monday, June 16, 2008
I almost forgot! We had a big storm yesterday and lost power for about 24 hours, so I didn't get a chance to put up a Father's Day post.
Happy Father's Day to the world's most awesomest Daddy! Thank you so much for taking such good care of us, and for loving us so completely.
The shirt says it all!
Posted by Billie at 4:14 PM
Wow, I've been a really bad blogger lately, haven't I? Life has been carrying on, pretty much business as usual. Last Wednesday was my last day of work for the summer, so I was pretty busy leading up to that with tons of last minute testing and paperwork. The girls were also sick with a pretty nasty cold-like virus that lasted about 10 days and were needing lots of breathing treatments. They are much better now, and we're quite happy to have made it through another illness with no hospitalizations! Wouldn't it be great if that whole sick=hospital thing were a thing of the past?
We had the girls IEPs the end of last month, and they went pretty well. The only semi-glitch has been with the county's hearing impaired program, and I don't think I can really call it a glitch. Last year they wrote a dissenting opinion to the IEP because they thought I should send Eden to their preschool. This year they were vocal in voicing their opinion again, though not with an official dissent. I think they make some good points, and certainly there are many good things about their hearing impaired program. However, as anyone who knows me knows, I have explored and questioned and considered every option, and when I look at EDEN, and at the BIG picture, I feel like we are making the right decision.
My reasons for NOT choosing the hearing impaired preschool for Eden are numerous. Logistically it does not work because it would be 30-60 minutes on the bus each way, it is 5 days a week, it is only offered for a morning session making breakfast and lunch difficult if not impossible to work out, and Holland could not go to the same school. For those reasons alone it is not an option. Add to that the fact that the auditory-verbal therapy center that we have taken Eden to for follow-up has recommended that she be fully included in a "normal" speaking/listening environment, with children developing "normal" speech and language to maximize her use of the cochlear implant, and our decision becomes even easier. Of course, that whole piece is more controversial, and open to interpretation, so there are politics involved. It doesn't seem to matter how well-set I am in what I want to happen with an IEP, it is always difficult to hear a dissenting opinion, and have my judgment questioned with regards to what is right for my child and my family, so even after all my preparation I left the meeting in tears. IEPs just suck, no matter how you look at it.
Anyhow... Holland and Eden will be attending a PLUS preschool in the fall in our school district. The PLUS preschool is a general education setting for children identified as "at-risk." Our school district has a grant which allows for an "inclusion" piece to the program. Each classroom has space for 4 children with IEPs, and is staffed with a full time special education teacher and aide, in addition to a gen ed teacher and aide. Parents are asked to volunteer once a month (do you think I can do twice a month since I have two kids?), and Eden will have a full time aide to assist with her physical needs. She'll also get PT/OT/ST/HI services, and Holland will get PT/OT, both mostly on a consultant basis rather than direct service.
We have visited the program for an open-house, and have met most of the staff. It seems like a perfect fit. They are already in love with the girls, and seem very open and willing to work with us. Although it will be hard for me to let them go, I know Holland and Eden are going to love it and it will be good for everyone. Still...nothing is set in stone. I can change my mind, I can make mistakes, I can reopen the IEP, I can pull them out of school and keep them safe at home with me for the next 2 years if I really want to. So there!
In other, more fun news, we have lots of great plans for the summer. We are leaving Thursday for a mini-trip to Chicago. The girls are totally OBSESSED with trains right now, so we are taking the train, staying two nights, and hitting Shedd Aquarium. Our major big-time super gigantic adventure this summer will be to Disneyworld for the girls birthday!!! We have our airplane tickets and they girls are talking every day about what we will do while we are there...visit Ariel in her "grotto," have breakfast with princesses, have dinner with Mickey, see Handy Manny and "say hi to tools," see Cinderella's castle, and watch the fireworks, etc. We are all very excited.
Eden is my princess girl, with her princess shoes, princess bathing suit, and princess bell on her walker. Her number one video request is for "princesses," she knows all of their names, and her favorite color is pink. Holland likes princesses too, but she is more of a Mickey Mouse Clubhouse kinda girl. Even more than that she loves Thomas the Tank Engine, and her favorite color is blue. Did you know that you can't buy a Mickey Mouse or Thomas bathing suit for a girl? That bugs me.
We just finished an 8-week parent/tot swim class at a therapy pool nearby. Two of Holland and Eden's cousins and one of our good friends swam with us and we had a great time. My girls both LOVE to swim, and we look forward to a lot more water time this summer. We're also looking into horseback riding. I found a t-ball team for kids with special needs, and we are totally THERE next spring. Eden will have her power chair by then, which will be perfect for running bases. We're hoping to have power wheels by the end of the month...I guess I'll believe it when I see it.
I just read back through this post, and boy it is kind of random. But, that is where we are right now, and it's kind of hard to write a cohesive post with a little girl on your lap pushing buttons:) So, this is from Eden:
eeeeeeeeeet,hteyik.i jp ;or kut[yl'po
Posted by Billie at 1:06 PM
Sunday, June 01, 2008
This is a new favorite activity for all of us, but especially for Eden. She's been talking about it for weeks. If you ask her what we did at the park she says, "fly a kite." "Holland go, Daddy go, Mommy go, and me." "I do all by myself." "Elmo kite, and Cookie, and Big Bird, and Abby Cadabby." "It was fun."
I just love that kid.
Posted by Billie at 2:21 AM