Archive for November, 2009

Therapeutic Mobility Device for Maria

Sunday, November 29th, 2009

We are raising money to buy Maria a therapeutic mobility device (we call it a special needs trike). She’s been on one 4 or 5 times at her occupational therapist’s office and loves it! We love it too because she’s well strapped in, she holds her head up in it pretty well, and best of all, her legs are moving all the time, building muscle. It has a handy steering device on the back, so we can push and steer, until she can do it on her own.

Riding the bike, in combination with her hippotherapy (physical therapy on a horse), her stander, and her walker, should improve her ability to walk–not to mention allow her to feel like the other kids who ride bikes. We’re also hoping the exercise will help her breathe more deeply (she gets upper respiratory infections every fall, in part from not breathing deep enough).

Unfortunately, like all things that are special needs, it’s quite expensive, so we’re hoping to get some small donations, to help defray some of the cost. Anyone who’s interested can donate by going to http://freedomconcepts.chipin.com/maria and donate via PayPal. There’s a short bio of Maria and some photos.

Thanks for your consideration!!! Hope everyone had a wonderful Thanksgiving!

Close the Door

Tuesday, November 17th, 2009

Yesterday Uncle Andy was walking with Maria. He told me that he told her to shut the door and she reached out and did it! When it happens once, it could be a coincidence. But they were on their 2nd lap and I was standing there, so he said, “Maria, close the door.” and she reached right out and shut the door! It was immediate and deliberate! And she had that cute little grin on her face. If only we’d gotten it on video! Ah, life’s simple pleasures.

Sick again…..

Saturday, November 14th, 2009

Poor missy Maria is sick again. She’s been on-and-off this week, but yesterday was bad. Her breathing was not good, she was very fussy–I would say inconsolable–and lots of kicking and moving, almost panicky. All bad signs. I called the doc at 11:30am, they could get us in at 2pm. Doesn’t sound like a long time, but it seemed like forever. We almost took her to the emergency room, but decided to wait for her appt. We couldn’t see her regular pediatrician, but did get to see the same guy who saw her a month ago. Her pulse ox (oxygen level in the blood) was 97, which is damn good for what we thought. It really puzzled the doc. He saw how concerned we were and how uncomfortable she looked and was confused. We got another chest xray, which showed something in her lower lungs. He said either it was fluid or that she wasn’t breathing to the bottom of her lungs. Since he heard something when listening to her chest, he decided to put her on antibiotics, even though she has no fever. Now she’s probably going to get another yeast infection. It’s a vicious cycle!! Maria single-handedly had her mom, dad, uncle, nanny, and aunt pretty freaked Friday (freaky friday).

Today, Saturday, she’s somewhat better. We kept the appt with the new speech therapist. It’s a clinic-based appt, so we go there at 11am for speech, then have to go back at 3pm for occupational therapy. It’s not too far away, but still kind of a pain. We’re going to work on either getting them back-to-back or something. As it is now, we can’t do the Jin Shin Jyutsu anymore.

The new speech therapist is experienced, knows a lot of people in Maria’s school district, is energetic, has lots of ideas, tried hard to get to know Maria, doesn’t listen very well to the mama, and has yet another idea for what to do with the Tech Talk. She wants it to be 2 pictures, each picture taking up half of the machine (which equals to 4 squares). She thought we could either put the same picture in all 4 squares of the left or right half, or 1 big picture in each half, which would be broken into fourths by the cover piece — don’t know if that makes sense. Big Sigh!!!!! I’m going to try and get the home speech, school speech, vision teacher, and possibly hearing teacher to all get together and decide once-and-for-all (again) what the hell we’re going to do with that damn device! She said the DDD (state agency) allows us to change devices after a while if we decide the one we got isn’t working. However, the state is in such dire straits financially, I have no doubt they will turn it down.

I ended up ordering a laminating machine and am now printing on my photo printer instead of the laser printer to cut down on the trips to Kinkos. But it seems that every time I make a new set of sheets for the device, we come up with another scheme and I have to do it again. Very aggravating (and expensive) for me and i’m sure confusing for Maria. I somewhat like what we came up with last time–pink background, 4 pictures with “I want”, “all done”, and 2 activities to choose from (e.g. bite and drink, or book and ball, etc). Oh my.

When we went back today for OT, Chris had Maria ride the bike again, and she did great! We’re supposed to get our quote on Monday for the Freedom Discovery bike we want, so we can get the website set up and start getting the bike paid for. Maria even pedaled the bike by herself a couple times. You can tell she loves it!!

School Meeting + Hippotherapy

Saturday, November 7th, 2009

We had our meeting with the school last Monday morning. The principal was there, along with all the therapists, teachers (only 1 special ed teacher, not both), facilitator from the school district, someone taking notes (I forget her job), and Andy and I. I met the vision teacher for the first time. She’s is totally awesome, understands kids with cortical visual impairment, isn’t making assumptions about what Maria can and can’t do, has ideas of things to try; but also is frustrated at how the school district works–I hope we don’t lose her. I also met the occupational therapist assistant (I forget his title) for the 1st time. Hmmm, how do I put this….I think Maria is probably a bit much for him. I’m going to ask someone why they assigned an assistant to her, considering the breadth and depth of her issues. Everyone else was great, helpful, open; nobody was defensive. The therapists all agreed to give me weekly reports, whether handwritten or emailed doesn’t matter, as long as they do what works. The special ed teacher is supposed to create the checklist of things I want to know about (how many steps/time in the walker; time in the stander; if she didn’t eat, why; how much she drank; etc). Not sure why it hasn’t already been created since we talked about it during the parent-teacher conference, but maybe she wanted to wait until after we had this meeting. I brought coffee cake and coffee, as suggested by Vicki at Raising Special Kids — good move, I advise this for others. Shows them we came in peace.

After the meeting we met with the vision teacher and the speech therapist and a few others were in there. We came up with some more ideas for the Tech Talk. For one, try a pink background since Maria seems to like pink. Try to use a better printer, my new laser printer prints photos very faded for some damn reason. I’m going to try using my photo (ink jet) printer. I also broke down and bought a laminator and trimmer on ebay because it’s such a pain in the ass go down to Kinko’s when I need something laminated; and it’s especially annoying when I do go down there and laminate 4 sheets and cut them all too short so they get stuck in the machine, like I did last weekend (AAARRRGGGH!). Vision teacher also had some other good ideas, but I wasn’t exactly tracking what she meant, so we’ll see how whatever she suggested works.

Tuesday afternoon was Maria’s first Hippotherapy of the year. It went great except that it was 95 degrees (yes, in November; no, I’m not kidding) and her helmet was too big and kept sliding around and pushing her glasses off; and her therapist was new (to Maria); and she used a different, much smaller belt. Maria was very floppy; I don’t know what she was doing, but she kept flopping onto her back from sitting. I think she was playing because she was smiling. They were out there most of the hour, which was shocking considering it was her first time of the season and it was so hot; so she got a lot of horse time in. The therapist tried another helmet which fit better, but had velcro in it, so it pulled Maria’s hair when she took it off. I think we’re going to have to buy her a helmet. (we went to 3 stores and haven’t found one yet…). We got home and 45 min later, Barb (the other physical therapist) came for her regular appt. Maria did well considering what she’d just done an hour prior. But boy was she exhausted Wed and Thurs! I don’t think they’re totally thrilled that I’m taking her out of school early, but there’s no other option.