Maria Rose

I took Maria to her hippotherapy Friday. Words just don’t do it justice. She behaves so differently on horseback than she does on the floor. She was sitting up better, moving her head, and generally more animated. She had been really sleepy that morning and I had to keep her from falling asleep before we left. Once that helmet went on, she got a huge grin and perked right up.

This Friday is probably the last session until fall. It’s already getting pretty darn hot out here so they’ll shut down until it gets cooler.

Later that afternoon we took her to get her AFOs adjusted. She doesn’t need new ones yet so just a few tweaks were enough for now.

Saturday ended up being busy as well with lots of family errands. She’s fairly nap-deprived at this point and lack of sleep is a big seizure trigger so she’s had many episodes over the last couple of days. Things should calm down for a bit so we hope she can get back to her old self.

In technical news, I updated the blog to version 2.5 today so if anything seems wonky let me know.

I think I mentioned that in the last week or two, a little blonde boy in Maria’s class shouted, “Maria’s here!!”, when we got to school. Of course Samantha is always happy to see Maria, petting her and hugging her, and Maria smiles in response–it’s so cute! But yesterday, when I dropped Maria off at school, it was the best yet. I rolled Maria through the gate and was signing her in, when a cute little girl in her class said, “Yea, Maria’s here!!” very excitedly; then she ran out to the playground and yelled, “Hey, Maria’s here!”, and Samantha, the little blonde boy, and about 4 or 5 other kids all came running over to Maria, surrounding her stroller, touching her and petting her. Maria got quite a kick out of it. I almost cried. It was probably about the sweetest, cutest thing I’ve ever seen. If only I’d had my camera. I’m glad Maria’s in school, at least she’s getting some socialization out of it, and experience with little people her size.

Today was Maria’s first hippotherapy at her new time, Friday morning at 9:30am. She did great! Sat up straight most of the session, Marcia said she was smiling a lot. In fact, I told Maria where we were going and she was smiling a lot in the car–I think she understood what I was saying. We only have a few more sessions before it’ll be too hot, but so far the weather’s been cooperating. When we got home, Maria slept for more than 4 hours so I got a lot of work done, and she had no problem getting to sleep tonight.

We were supposed to meet a new speech therapist, but when she was about 4 houses from us, she got a call from her fiance that the dog had gotten out of the yard, got hit by a car, and had to be put to sleep; so she was going to have to go home and tell her 9-yr old daughter. Poor thing, she was so upset. We’ll try again next week.

We’ve been wondering what the magic button is to make Maria tick and today we figured it out. It’s the Wiggles! We went to see them today and although Maria started out being a little tired and a little fussy, as the show went on, she really came alive!

She actually stood for most of the concert, which was about 2 hours long. She was very active, didn’t want to sit or lay down. She actually watched what was going on; Sue even saw her tracking some of the action. One time they turned off all the lights, then shined a light on the disco ball so it looked like stars were spinning around the room. Maria looked like she was in a magical kingdom–she was looking around and smiling. Sue & I have never seen her so excited, smiling, full of energy; and for so long. I tell you, it almost made me cry.

We were in the accessible seating, which was on the top floor, same level that you walk in on. We were looking right down onto the stage. We had our own little section, it felt like we were in private box seats. That might have been part of it, the nice location; not quite so crazy as being in the middle of the audience.

Sue got Maria some cotton candy and gave her quite a bit, so maybe she was just trippin on sugar, but whatever it was, Wow!

It’s really funny because Maria hardly even reacted at all to the Doodlebops; in fact she fell asleep right before intermission. Maybe she’s too old for them? Anyway, I went out and bought a Wiggles DVD after the concert (I was going to get her one at the concert, but holy moly, the line was long for merchandise purchases!). Amazing!

Maria had a nice time with Virginia this morning in music therapy. She was engaged, and oh, so affectionate! Good day at school. When I dropped her off today, a little blond boy yelled out, “Hey, Maria’s here! Miss Kelly [teacher], Maria’s here!” That’s the 2nd or 3rd time the kids in the playground have yelled that when I’m loading Maria up in her stroller. Does a mom good to hear it…

Sue said Maria ate a good lunch, and she ate a good dinner for me. Big spoonfuls of macaroni & cheese (you know, what the feeding therapists tell me not to feed her because it’s a mix of textures. Whatever!), lots of it, and no choking! As Andy mentioned, she’s not been eating well lately. She’s back down just under 30 lb., so it was great to see her eat 2 good meals in one day. Plus she does love her milk, so that’s always a given–so far. When she’s not eating, I load up her milk with half & half, pudding, yogurt, rice cereal, coconut milk–anything to boost the calories.

But the best part of the day was after I got home at 6pm and after she ate her good dinner, we went for a walk. I could tell she was so tired, so as soon as we got home, I got her jammies on and put her to bed. She was fussy and restless, so I went in to settle her down. She reached up with both arms and gave me a hug around my neck, without hair pulling, hugged me for a minute or two, then one arm dropped, and the other arm dropped–she fell asleep just like that! Even though work SUCKS lately, that one little hug made my bad day melt away and reminded me what really matters…