I was in Portland, Oregon all last week for work. It was wonderful to be back in Portland, seeing old friends, making new friends. The conference turned out great. Of course, I missed Maria and Manolis, and it was great to get home–too bad my friends, laryngitis and exhaustion, came with me. Maria was asleep when I got home. She stirred a bit when I kissed her, but didn’t wake up.
Saturday morning at about 6am, I heard Maria yell. That’s usually her telling us to change her diaper and/or bring milk and/or I’m hot or cold and/or I want to crawl in bed with my mommy. I knew what Saturday’s yell was about–my mama’s home!!!!! I went in to get her and she immediately gave me a huge smile, followed by a big, long, strong hug–my favorite kind! That’s the first time she’s given me the immediate feedback. Usually I get the cold shoulder for a while, then subtle recognition.
We’re taking her back for Jin Shin Jyutsu treatments again; she’s been standing more, walking a bit more, and moving a lot more on the floor (rolling, army crawing)… Could be a coincidence, could be a cause-effect relationship. Doesn’t matter. We’re going back to weekly treatments to see if we can get Maria back on track. Maria has back-slid on standing and walking, but is making great progress on army crawling, pulling up on furniture, rolling, getting up on all fours and rocking–movin’ and groovin’! hmmm, Jin Shin or just feeling better?
Her breathing has been AWFUL (rough) over the weekend; today wasn’t so bad. Kinda freakin’ out the mama.
Went to see Dr Ellis (neurodevelopmental pediatrician) today. She’s worried about Maria’s scoliosis, as am I. She thinks Maria needs a back brace and she’s usually fairly spot-on. Phoenix Children’s Hospital has orthopedics now, so we’re going to see someone there rather than waiting a year to see the Shriner’s again. Dr. Ellis wants us to work on getting Maria’s shoulders back and down to open up her lungs more. The PT needs to check out our car seat and see if Maria has enough protection and support for her head if we’re in an accident (yea, that’s 4 car seats really–my car, Manoli’s, Andy’s, Sue’s). The doc is going to check into travel seating, you know, something to replace the Sit ‘n’ Stroll for the airplane and car. Sure hope Maria still fits in the Sit ‘n’ Stroll for our Nebraska trip. I can’t remember what all else Dr Ellis said, I got pretty stuck on the back brace thing (Andy usually comes to the Dr Ellis appts, but this was a last-minute cancellation, so no chance to rally the village). She said the good news is Maria is improving every time she sees her, the bad news is it’s slow.
I just finished Kathleen Morton’s book, The Unconquerable Spirit, about her daughter who had seizures at 5, went blind at 8, wasn’t diagnosed until 15, and slowly lost the ability to talk, walk, etc because of Batten disease. It’s a great book about all the many, many things Kathleen got changed in New York and Arizona for her daughter. Things that didn’t make sense, or things they were doing that were against the law. She was current on all the laws (state and federal), usually went to the top of the agency, usually got her way, and didn’t back down. The book was inspiring and traumatic at the same time. When you have a special needs child, you have to fight constantly on many fronts to give him/her what they need. Case in point, I’ve probably called our DDD service coordinator’s supervisor 3 or 4 times trying to get another service coordinator assigned to us because the current one doesn’t fit well in our village. At all. And he’s still giving me the run-around. Now with this budget cutting nightmare, I’m sure they’re all trying to save their own butts. And I need to get off mine and write some letters; the services they’re cutting are appalling.
Tomorrow is Maria’s IEP (Individual Education Plan) for the rest of preschool; they’ll use it as a kick off to her kindergarten IEP. Maria is a very complicated girl with many facets and it seems to have the preschool teacher stymied a bit. I spoke with the school PT today about goals, etc. She argues with everything I say. She had a walking goal, I asked her to add a standing goal (which I said she could add to the walking goal, she said no), and a floor goal(s)–independent sitting on the floor, and rolling/crawling/pushing up from prone. She said that’s 4 goals (standing, walking, sitting, rolling/pushing up); if we had 4 goals for OT and 4 for PT and 4 for speech, etc that would be too many, so which 2 are the most important to you. hmmmmm, let’s see, out of standing-walking-sitting-floor moving, which isn’t important for my child? Yea, whatever. When I mentioned that our home PT, OT, speech, mom, uncle, nanny, and child would be there, the school PT said, “you’d better let them know we need a bigger room.”– not in a good way. Again I say, yea, whatever.
Glad to hear Maria was sooo pleased to see you.
Hope IEP planning goes okay tomorrow.