Maria Rose

Maria decided to get one of her respiratory episodes a few days before Thanksgiving. She got better then worse then better then worse and finally we decided to cancel our travel plans and stay home. She was pretty bad for a while, pale and clammy and wheezing, but she’s doing a lot better now. She still sounds bad but her color is better and she has a lot more energy. She’ll go to school tomorrow and seeing her friends again will help.

She continues to have some interesting communication moments. For example she took my finger tip and rubbed it against her face under each eye then rubbed my hand on top of her head. I’m fairly sure she was saying she had a sinus headache and she fell asleep after I gave her some Tylenol. There was at least one other incident but I can’t remember it right now.

Cathy got sick too but Manolis avoided it. He wasn’t going to go with us at Thanksgiving and instead was going to spend the holiday in Vegas. After our trip was canceled he didn’t want to go but Cathy insisted. She practically had to physically jam him in the car to get him to go. He needed the break and felt a lot better after the trip.

Between the holiday and being sick she’s had a long break from therapies but that’s a good thing. She often does better when she takes a few days off.

The AFO appointment was, er, interesting. Maria hadn’t napped so was a little cranky and to make the molds she has to hold still, but the tighter we hold her the more she struggles and the tighter we have to hold her. It was quite challenging. Plus the bandages she wraps around Maria’s foot to make the mold have fiberglass in them so we have to be careful she doesn’t touch them and get those tiny fiberglass splinters.

The new AFOs will be HUGE compared to the old ones just because Maria’s legs are so much longer. The orthotist told Cathy she can get regular shoes rather than expensive special ones but you have to shop around to find places that sell the super-wide sizes. She mentioned New Balance as a brand her clients have used so Cathy’s going to check them out.

Maria was more cranky when we got home and Cathy figured she wanted to hear Sue’s voice. Sue had called earlier to tell us the surgery went fine, they found the problem and she was home by about 1 pm. She can’t life Maria for the rest of November but we hope she should be fine after that. Anyhow, so she called Sue and put her on speaker and Maria lit up when Sue started talking. She was exploring the phone trying to figure out where Sue was. Then when Sue said “bye bye” Maria pushed one of the phone buttons and it beeped. We all laughed, figuring it was coincidence, then Sue said “bye bye and Maria pushed the button again. She did it four times in a row. It was great!

The other day when Maria was pooping I made the “toilet” sign to her and she made a pretty good approximation of the sign herself which, again, I would have dismissed as coincidence. But then she put her fist up to mine, mirroring what I was doing. Wow! Later when I tried to show Cathy, I made the toilet sign to Maria and she pushed my hand away with a disgusted look as if to say, “I’m not pooping, you dumb grownup.” We haven’t been able to get her to do it again but she is showing glimmers of communication so we are encouraged. I’m particularly interested in how she’s going to do when we get the augcomm device.

She has her monthly feeding therapy later today. We are considering dumping her since the speech therapist comes every week and does some feeding stuff. If nothing else, it’s a long freaking drive and it takes 2.5-3 hours out of Maria’s day for one appointment.

Tomorrow she starts hippotherapy again which is also very exciting. She’s gotten pretty good in the walker. She still goes backward rather than forward, which is normal, but it’s getting more purposeful. She likes getting up near the counter or a table then reaching up to explore what’s on top – just like a real kid! Once we add the hippotherapy and the new AFOs to the mix, I think she’s really going to make progress.

I was in Colorado for work the week of Halloween, so Sue went to the school Halloween party with Maria. She said Maria was raising her hands, waving them, while they were in the parade through school; said Maria really enjoyed herself. I got home on Halloween in time to get Maria’s Japanese princess dress on and do her “make up”. She LOVED the make up! Sat real still while I put powder on her face, eyeliner, and lipgloss. I think she’s going to be a make up girl… Manolis & I took so many pictures trying to get a good one, that she was exhausted by the time we were going to go out Trick or Treating. We started at the next-door neighbors’. I sat down, they gave me a beer, Maria had her milk, we never got any farther. Manolis was cooking salmon, so he brought over plates of salmon and our basket of candy, and we just sat there on the driveway in the 80 degree temperatures, ate, drank, and gave away candy.

We went to the eye doc Monday. Maria’s eye muscles are still a bit weak and he thinks he may have to do surgery to strengthen the muscles. The way he said it, with such confidence, that it didn’t totally freak me out like it should have. We just need to patch more, I guess. On the bright side, her prescription is still fine (I’m surprised), so new glasses aren’t needed yet.

She’s been getting very intense with her hands. None of us can figure out what’s up with that. It’s like she’s desperately trying to communicate with us but doesn’t know how.

Speaking of communicating, we went to see Sue last night (she’s having her surgery this morning to fix the CSF leak) to wish her good luck; Maria had hardly eaten all day, it was almost 7pm, and we needed to get home to feed her. Sue asked if we wanted to come inside and see the kitchen and play for a little bit, and Maria shook her head no! I swear it really seemed like she was responding to Sue’s question! Wow!

Today, we have an appointment with the “UFO Lady” (for Maria’s AFOs). It will be her 3rd pair. I have no idea how I’m going to find shoes for these. I think I’ll have to go the expensive special shoes route….