Archive for October, 2008

Sick But Going Strong

Friday, October 24th, 2008

Cathy has to travel for work next week so Maria is doing what she always does when Cathy leaves town – she’s gotten sick. It’s not bad, just a little chest congestion and a mild fever, but it’s something Cathy can worry about while she’s gone. Because she’s under the weather she of course isn’t performing very well today. Her vision is noticeably worse and she doesn’t really seem to enjoy anything. Understandable.

However recently she has been doing really well. I got the chance to observe the PT working with her last week. She’s the one who walks Maria around by holding her under the arms. I noticed that Maria holds herself much more naturally and looks, well, like a little girl trying to walk. I wish I’d thought to get it on camera to compare it to the other video we have.

The more interesting thing was observing her thought process. At least three times, she brought one foot down so that it blocked the other. When she realized the next step was blocked, she very deliberately pivoted the blocking foot out of the way then took the step. One time when pivoting didn’t work she made an exaggerated sidestep with the blocking foot to get it out of the way. She clearly understands the process and is just coordinating it.

She walks with her eyes rolled up in her head because it takes so much concentration that she can’t walk and see at the same time. As she gets better she’ll be able to coordinate both actions.

One of the latest battles has been getting the state to get Maria an augcom (augmentative communication) device. This is like a big keyboard with pictures of objects that she can use to communicate more easily than sign or speech. The DDD representative has been slow to respond. He’s not blocking the action or anything, he’s just a slow mover. Cathy was talking to someone about it at a DDD meeting and it turned out this person was his boss’s boss’s boss’s boss (I may have left out a couple of boss’s. There are an awful lot of managers in the DDD and it sure seems like…well, whatever the politically correct version of “All chiefs and no Indians” is nowadays.) Anyhow, so this person called the rep’s boss and he called Cathy and the process has been moved along.

Cathy is now gathering the giant stack of paperwork to justify this device and we’ll see what happens.

Maria’s First Birthday Party!!!

Sunday, October 19th, 2008

Matthew, a boy in Maria’s class, invited her to her first birthday party (besides her own, of course). It was at Pump It Up!. The party starts in one room with bouncy things, then moves to another room with different bouncy things, then ends up in a room with cake and ice cream. I took Maria in one of the three bouncy things in each room–the others were a little too complicated or wild. She LOVED it!! From the first moment we walked in the big dark room, she started smiling. Her face was full of wonder and magic when we were in the bouncy things. It was wonderful.

Cindy, Matthew’s mom, was so sweet. She used to teach special needs kids, so isn’t intimidated by Maria. Her son has mild autism, you can hardly tell. He’s very nice to Maria. I talked with Michelle, cute little Dante’s mom; she’s the one who helped Sue put Maria in the car her first day back picking up Maria after fracturing her elbow. Michelle is very nice and also is protective of Maria. Matthew and Dante will be in preschool for another year. Monique was there, but didn’t pay attention to Maria. Maria’s best friend, Samantha, wasn’t there.

Most of it was good, positive, wonderful. Some parents (mostly of kids not in Maria’s class) seemed a little scared(?) of Maria–but I realize I’m over sensitive and I would have been the same way before I had Maria. The cake and ice cream room was a little intimidating because it had just 2 picnic tables in it, so the kids sat at the tables and the parents stood around the edge of the room. Nowhere good to put Maria, so I took her out of her stroller and held her at the emptier table. By that time, she was getting maxed out (falling asleep mid-cake bite), so she didn’t care where she sat.

I’m glad we went. It was a great experience for Maria. I’m sure it’s the first of many parties. Manolis was too chicken to go in the bouncy things; I thought it was fun. Next time his job will be the photographer; I was so busy with Maria, I didn’t get too many good pictures.

Kindergarten Transition Meeting–Friday we had a meeting with her preschool teacher and the therapists; I thought it was going to include the K teacher, but that meeting will be in the spring (which makes more sense, so why did they call this a K transition meeting when it was just her progress meeting??). Most therapists were nice, fine, supportive, etc. The speech guy said he only gave Maria a 20% because he didn’t feel she consistently gazed between 2 objects and made a choice. I told him that surprised me because she usually does well making choices. I asked him what objects he showed her, and he said a spoon and a shiny ribbon. Duh. No wonder she didn’t gaze between objects and make a choice. You need to give her good choices, like chocolate and asparagus. He also said we need to make sure she’s not pocketing food (hiding food in her mouth), which has never been a problem with her, and he showed us how to sweep around her mouth to be sure there’s no food. I said, “you mean you stick your fingers in her mouth?!” He said he was careful and to keep your fingers between the teeth and cheek. Sue is the only one who will put her fingers in Maria’s mouth, regardless of where you put your fingers, she’s fast and tricky and strong and has very sharp teeth. Ah well, he’s young, he’ll learn.

They talked about all the testing they need to do to give her another “label” (diagnosis?) for kindergarten because it’s different than the requirements for preschool. They’re leaning toward MDSSI (tho’ I think there’s another M or another D), which is something like Multiple Disabilities with Significant Sensory Impairment. They’re now acting almost like her hearing is normal (although she does have a hearing teacher), which is just about as bad as back when Maria was 6 months old and they acted like she was deaf.

I’ve really got to figure out something to do with her hearing–go back to the audiologist at Phx Child Hosp, send her test results to the woman I met from the Ear Foundation, do something! We’ve finally got a plan for her gross motor skills (stander, walker, Barb practicing with her, hippotherapy starting in early Nov), but I need to get on the communication thing, and I think it’s time to hop back on finding an occupational therapist for fine motor skills. Perhaps she’ll stop biting and hair pulling.

Many of the evaluations they need to do can’t be done the typical way (I assume they usually ask the kid questions), so I’ll need to fill out more forms, evals, etc. The one that makes me least comfortable is the school PT testing Maria for gross motor skills. She’s not the best judge of Maria’s abilities, though she’s less negative this year than last. I’d really like Barb to participate. I think I’ll ask Kelli if we can do that…. such a trouble-maker!

Hurricane Maria Leaves Two Injured

Friday, October 17th, 2008

So many stories to tell this time.

Maria’s neurologist appointment went fine. Cathy mentioned the Cornelia de Lange and he was skeptical, saying it’s a common knee-jerk diagnosis on kids who have beautiful hair and neurological problems. He said we know that Maria’s problems come from hydrocephalus, although I disagree with him on that. We don’t know it’s the hydrocephalus that causes all of these problems. We suspect it but there is no proof and it could be masking other problems. In the end he said he’d read up more on the condition.

She’s been doing a lot better in the walker. She’s able to move it a bit on her own, although she can’t control direction yet. She tends to go backwards but that’s generally how things progress: the kids push backward because it’s easier but then learn to move forward. We’re very happy with how she’s progressing.

However it’s not all rainbows and unicorns here. Sue had Maria last week and put her on the couch just for a second while she put the blanket on the floor. You know how stories involving kids and the phrase “just for a second” turn out. Maria immediately took a dive for the floor. Sue lunged to catch her, tripped and came down hard on the tile – SNAP! Thankfully, Maria was fine but now Sue was alone with her, nursing a broken elbow. She called Cathy and Cathy came home so Sue’s husband could take her to the emergency room.

At first they said there was a bone chip floating around so they were going to have to do surgery. Then a few days later the doctor said is was just a hairline fracture and she could go back to taking care of Maria in a few days. Since then she has been back at work, lifting Maria and the stroller without problems. We are a little leery she’s pushing herself too hard. She still has that other surgery scheduled for mid-November.

Maria’s developed a couple of bad habits. Her biting has resurfaced and we are all having to be careful. Unfortunately, the aide at school let her attention wander. Maria bit her, broke the skin and she (the aide) had to get a tetanus shot. Cathy was mortified, but the aide was philosophical about it. Maria’s just too cute to get mad at.

Finally, Maria is getting much better at manipulating her environment, occasionally in unpleasant ways. This morning (like 4 am) Manolis went in to check on her. Maria had pooped during the night then pulled off her diaper and rubbed it all over everything. It was that nice soft, liquidy poop too. It was horrific. We’ve all had trouble with her grabbing at her diaper when she’s getting changed. It’s great that she’s curious about her environment, but *eww*. Other fun things she’s learning to do include pulling open the Velcro straps on the stander and screwing off the bottom of her bottle.

Rough Week, Good Week

Sunday, October 5th, 2008

Maria had a rough time week before last. She pretty much didn’t sleep for several days which means neither did her parents. She didn’t seem in distress – she just didn’t sleep. She’s back on a more normal schedule now. Surprisingly she had no seizures during this period.

She’s started eating cold food. She has always hated cold food even things like ice cream. I’m not sure how we started, but we realized that she’ll now eat cold meals just about as fast as hot ones. That makes it easier to prepare meals plus widens the number of things we can give to her. The speech therapist is happy because cold food stimulates the oral muscles more, waking up her mouth and helping her handle the food better.

Maria has been invited to her first birthday party! When Sue picked her up one day one of the other mothers approached her cautiously, wanting to know if it would be OK to invite Maria. She didn’t know if it would be too much for her or if there would be some other reason she couldn’t attend. Sue assured her it would be fine. Cathy’s going to take her and even Manolis has expressed interest in going.

Her awareness of the surrounding world continues to improve. For example, in the morning she’s often stressed out going to school, hunched over with her thumb in her mouth. However as soon as her friends come running up, she relaxes and the thumb comes out. She’s been babbling more lately, making syllable sounds rather than just “aaah” type noises.

She has a routine neurologist appointment tomorrow and she needs to see her eye doctor soon but I think those are her only doctor visits coming up.