Archive for July, 2009

The Wiggles!!

Monday, July 27th, 2009

Uncle Andy, Maria, and I went to Maria’s 2nd Wiggles show today. She didn’t stand up for the entire concert like she did last year, but she sure seemed to enjoy herself! Everytime I thought she’d had enough and was tired, I’d look over a few minutes later and she was smiling. Andy & I took turns holding her, which she seemed to like. When they shined lights on the walls and ceiling, she tracked them. Twinkle Twinkle Little Star was a big hit again, just like last year. I didn’t get a good photo of her looking around, but it was beautiful!

One of the things Andy & I liked about the Wiggles is they don’t seem to be full of themselves. They were relaxed, they interacted with the audience a lot, encouraged the kids to dance, read the signs they were holding up. Lots of gymnastics and tumbling. Nice atmosphere.

It’s pretty exciting to see how much more aware of her environment Maria is and how much more active. Yesterday we went to Barnes & Noble; she was in her stroller pushed up to a table and she grabbed the table and kept pulling and pushing herself so the stroller would “slam” into the table making a noise. She was clearly enjoying the cause/effect. Today on the way home, she was complaining because the sun was in her face–possibly the first time for that. As I mentioned before, we’ve been working with her on clapping. During one of the songs at the concert, I was holding Maria and clapped and she immediately put her hands together like she was trying to clap. She’s been holding her hand out flat to wave hello and good-bye and maybe get a high-five or two.

Only a few more weeks until school starts. Let’s just hope it’s a good situation and she continues to learn and improve!

I was going to post some photos, but it’s not working. Operator error? I think not!

Sue-Sue’s Back

Sunday, July 26th, 2009

Sue’s been back this week. She has been putting in only a couple of hours each day but that’s for the best. I think she’s been surprised at how exhausting it is. Cathy still has the other two women she found helping her out so there’s a whole horde of people taking care of Maria.

The public pools have closed. They are open for only a couple of months which is a pity. The government’s so broke they cut back on hours and close the pools a week early to save money. It’s too bad because the swimming did Maria lot of good. Sue bought her a little backyard pool. Well “little” means it’s about ten feet long. The water’s only a feet or so deep, but that’s enough to float in. I took Maria in it for the first time and after she got used to the cold water, she had fun kicking her legs and doing a little splashing.

When I had her Friday she was pretty cranky all day and wouldn’t eat more than a few bites. Then right before I left, she threw up a whole lot. I hope she’s feeling better. She has to be better for the Wiggles tomorrow!

It’s frustrating when she’s obviously not feeling well but we can’t tell what it is. It is a headache? Upset stomach? Allergies? Ants biting her toes? Anxiety about healthcare reform? It will help when she can tell us what’s wrong.

Speaking of speaking, the speech therapist agrees with us that the Tech/Talk just isn’t doing much. We still haven’t figured out the inserts we need. The software makes sheets that are too big so we have to trim them down, but the difference between “too big to fit” and “small enough that they slide around when she uses them” is about 1/4″. Plus we have to laminate them and so on. It’s a giant pain and often we just don’t bother with it. The therapist is saying we need the VMax, the other device Cathy and I had wanted. She (the therapist) is going to try to get approval for that but I doubt they’ll allow it after only a few months.


Saturday, July 18th, 2009

For those of you with “typical” kids, this will be no big deal, but to me, it was fantastic! Today during occupational therapy, Maria allowed Chris (the OT) to clap her (Maria’s) hands! I even heard the clapping sound! We’ve been trying for years, literally, to get her to clap, but she closes her hands and won’t allow us to bang her hands together. Lately Maria’s been keeping her hands open, so I’ve been doing “high five” with her (she learned that back when she had music therapy). She seems to like her hand being high fived. The new clapping skill is good timing, since we’re going to see the Wiggles in a week or so!

Maria’s been doing pretty well with her walking. We’ve been walking with her more (that’s one of the good things about having several different caregivers each day, she gets more practice with her walking). She’s taking lots of independent steps, which is much better on my back (and others’).

Our friend George came by the other day with a friend, who happens to be a preacher/minister. They prayed over Maria and said God would heal her some day (one of the many who have said that). One step at a time, right?

Steppin’ Like She Means It!

Monday, July 6th, 2009

Maria has been doing great with her walking–earlier this week, she broke her record 3 times in a row!! We count the steps she takes by herself and she’s up to 92 or so. It’s much easier on the back when she’s bearing weight and taking her own steps. When PT Barb walks with her, she’s very patient and waits for Maria to take her own steps. When I do it, my back isn’t in as good of shape as Barb’s, so I kick (gently, of course) Maria’s feet, not waiting for her to move her own feet, rather my method is to give her more practice taking steps. I think it helps to have a variety of methods–you never know what’ll work from day to day.

I was walking with Maria on Saturday and she made it 4 laps pretty much by herself!!!! Each lap is about 35-40 steps. I was shocked and amazed and so proud! She took step after step after step by herself, I hardly had to encourage her feet at all. Not much foot dragging, not too much tangled feet. It was awesome!!! I only wish I could’ve captured it on video. Between the Jin Shin Jyutsu and the intensive physical therapy this summer, it seems to be working. We just need to keep her healthy and keep up the practice when school starts…

Channeling Renesmee

Wednesday, July 1st, 2009

Sunday, Maria was channeling Renesmee again (you know, from the Twilight series, those books about vampires; Renesmee’s the cute little one). We were having a nice little snuggle, when she bit my neck; not a full mouth bite, just a little nip from her long, sharp canines. You’ve gotta watch that one!

On the bright side, she did really well at the pool Sunday. She could tell where we were before getting in the water, maybe even just coming in the gate, because she was smiling. She took a LOT of steps in the pool. There’s a step at perfect depth for her to walk on. I held her at the waist or held her hands and she moved her feet by herself!! Monday, she broke her current record 3 or 4 times in a row with Barb, the physical therapist. She took 30 steps, then 60 steps, then 90 steps on her own (meaning she’s being held upright, but she moves her feet by herself).

We think those two days tired her out, because Tuesday she didn’t do very well. I’m going to take her to the pool this afternoon and try some more pool walking. Barb’s not coming back until Friday, so we’ll see how she does then.

Chris and Kristin (occupational and speech therapists) came this morning and came up with a 20-minute “routine” to get Maria focused. It starts with rolling her on the ground, then sitting up, then rolling on a ball; all the time giving her “input”, where you’re pushing on different parts of her body to help her be more aware of her body in space. You can tell she likes it because she’s grinning the whole time and not sucking her thumb much. Then she’s focused enough to do the OT or speech work. For Barb what we do is 15-20 min of deep massage on her legs and feet, which seems to help her walk better.

We went for a Jin Shin Jyutsu treatment this weekend. Wonder if that’s why she’s doing so well this week??