Yesterday and today I took Maria swimming. Yesterday it was at a party in downtown Phoenix for the Deaf-Blind Project (hate the name! but they won’t change it), which is for parents of children with hearing and vision issues. The other kids there were younger than Maria and all so tiny; I assume they were micro-preemies. Today we went to Telephone Pioneer Park in Phoenix. I sure wish more people knew about that pool. We went at 4:30 and were the only ones there (besides the life guards, of course). One other family came as we were leaving.
Maria had that silly grin on her face in the pool, especially yesterday–the one with all her sharp teeth showing–the one I love so much! It was mostly when the water touched her face or ears, when I had her on her tummy. Today she was even laughing! It was so cute!
Yesterday we went to the pool party, home for an hour to eat, then to her OT and new speech therapy appointments. She didn’t do much for Chris and was totally asleep for the new therapist. Chris thinks she’s still getting over her traumatic experience and we should go easy on her. The PT doesn’t want to do extra visits this summer because she doesn’t think Maria’s ready for it, and now her OT is saying the same thing. I just need to tell myself that it’s ok to take a break…. When I used to play guitar, if I took a break for several months, I always started back up stronger and better.
I don’t think the new speech therapist is going to work out. I don’t think she read anything about Maria (e.g. previous progress report) because she was reading it during our appointment. She didn’t notice that we’re not working on oral-motor anymore, we’re focusing on augmentative communication. She hardly asked me any questions–even when I asked her more than once, “do you have any questions?”. She had no suggestions, didn’t talk much, didn’t seem all that interested, really. I came on a little strong about my goals for Maria, but even so, she had plenty of opportunities to chime in.
Today, Maria slept late (about 10:30am), ate a good breakfast, then we went to the outlet mall. I got her some shoes that might work with her new AFOs. I asked for a shoe horn. When we were checking out, I asked if she’d charged us for it and she said it was free; when we got home, she’d forgotten to put it in the bag. Very aggravating! I have to go back up there to exchange a dress for Maria that I got in the wrong size (I thought the S was a 5), so I’ll just go back in and get the dang shoe horn.
After the mall, we went swimming, she had dinner, then went to sleep. So I suppose if I keep her busy enough, she doesn’t sleep as much (except for those times she’s fallen asleep mid bite, in her walker, in her stander, anytime, anywhere, if she’s tired enough).
Friday I called the neuro nurse again about them cancelling us for the epilepsy monitoring. I hope she calls me back Monday. I also hope the dang state “advocate” gets back to us. We’ve now been a month without habilitation hours, and I’m still trying to get her to transfer 4 hours of aug comm training to the person I asked her to transfer the hours to. It’s so hard to find good help….
Of course, since today is Father’s Day, we called Manolis (and my dad). Two times now, Maria has started complaining as soon as she hears his voice. It is sweet and sad at the same time. She’s been seeming more aware of things. I’m sure when I put her swim suit on today, she knew we were going swimming because she smiled. She’s been petting Kijana nicely more often. There were several other things I’ve noticed the past week or so, but of course I can’t remember what they are. She’s really getting big and long, harder to pick up, much harder to put in the car seat. Dang it, I’m going to have to go see about that wheelchair van pretty darn soon….
3 more days and my sweet baby will be 6 years old!!!