Maria Rose

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….

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.

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!

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.

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.

The big news is that Sue is back after being gone for six weeks taking care of her dying mother. She and Maria missed each other terribly and everyone is happy that she is back. She still has to have her surgery but first she’s going to take a couple of weeks to get used to being back and to get lots of Maria time.

The other big news is that I finally got around to posting all the videos we’ve been taking over the last year or so. Most of them are pretty old so show Maria at a lower level of ability than she is at now.

I had to be a little obscure about the “#2″ video because a more explicit name would attract, well, people looking for those kinds of videos. But now people who haven’t heard Maria’s unique little noise can do so.

Maria had a busy day today. She went to Shriners, to the gastroenterologist & nutritionist, and had her usual speech therapy.

At Shriners we finally met the guy who contacted Cathy about the stander after that article. He said he was “spittin’ mad” after reading about her and was glad he was able to help. He told everyone she was the girl from the newspaper.

The doctor said her hips looked better than they did in December. Her only slight concern was how tight Maria’s hip flexors are, which are the muscles that lift the leg. She gave us a simple stretching exercise to help with that. She of course also encouraged as much standing and walking as possible.

The GI and nutritionist didn’t have much to say. The neurodevelopmental specialist had suggested we go to the nutritionist to see if we needed to add anything to her diet. The nutritionist was kind of perplexed why we were there. Maria’s diet is so absurdly good that she couldn’t think of anything to tell us. It was a wasted visit, but we like those. Maria’s weight was over 33 pounds.

It wouldn’t be Maria if we didn’t get a new diagnosis to worry about. The Shriners doctor noted that her beautiful hair, bushy eyebrows, long eyelashes, small hands and feet are all symptomatic of a genetic condition called Cornelia de Lange Syndrome. She mentioned that we might want to get a genetic screening, then dismissed it as unimportant.

For laughs I looked it up, and it’s not really that unimportant. The symptoms fit Maria really well and the complications include heart and kidney problems.

It’s not something we are obsessing about but we’ll mention it the next time we see the pediatrician. A genetic screen wouldn’t hurt.

Maria had another of her respiratory episodes. She got all congested, her fever spiked to 104.7, and everyone got very worried. However the fever came back down quickly to the 101 range. She got sick Wednesday of last week, which was an off day for school, missed Thursday but then had the next 4 days off anyhow. Nice timing!

Even when she was sick, she was doing great in the walker. She doesn’t seem to love the stander as much, but she still does really well in the walker. Yesterday when I was with her she did 23 steps, then later another 23.

Someone asked what we mean by “steps”. A step means that she moves her feet on her own, left-right-left-right. She’s not holding her own weight or balance, but she is consciously moving her legs like walking. She’s figuring out that moving her legs makes her go forward.

When we were walking by holding her up by the arm pits, we’d have to prompt her for a time. The PT would have to walk with her back and forth in laps about 40′ long and on about lap 5-6 Maria would get it and start moving her legs. That’s when we got those 150+ steps in a row.

With the walker, she doesn’t need so much prompting. I find within about half a lap or less, she’s moving her legs. It’s also a lot easier on our aging backs.

One final thing. Now that I’ve seen the walker and the stander up close I just have to ask: How could those idiot medical directors at DDD and Care1st think that a stander and a walker are the same thing? Sorry to shout but GEEZ! Have they ever even seen a stander or a walker? They are nothing alike! It just goes to show that doctors are not qualified to make decisions about therapeutic equipment. They should have PTs making those decisions.

Ok! We now have both the walker and the stander. The stander is an EasyStand that goes from sitting to standing. Jeff, the guy who delivered it, was still trying to get all the adjustments right when we put Maria in it in a sitting position and she kept trying to pull herself up to standing. She was so excited about it! There’s a clear tray on it that she kept looking through and hugging, while grinning like a monkey. It was just so cute! I’ve never seen her more excited about anything (just her family and friends, and we’re not things…).

She was in the stander for quite a while a couple times today. We fed her in it and the only trouble is the food gets in some of the cracks of upholstry that sits on the tray (stupid design), so we’ll have to do something about that because I want it to stay relatively clean if possible. She seems pretty secure in the standing position, but we’ll have to watch her in the sitting position–she might be able to wiggle out of it…

Jeff and Barb (physical therapist) adjusted her walker while they were here. Maria was doing really well in that also. I think Barb was impressed. I sure am! There’s a way to lock the wheels so they just go straight, which might be better starting off. That way, any movement she makes results in forward motion, rather than random forward, backward, side-to-side, not really getting anywhere.

Auntie Rose was here all weekend. Maria is fascinated by her. She (Maria) stares at her (Rosanne) all the time, like she’s trying to figure out why this person acts and sounds so much like her mom, but is so different. We had a great, action-packed weekend, which was too short.

They seemed to really enjoy meeting Maria at the El Zaribah Shrine Sunday. Glad we went. I’ll need to send them a picture of her in the stander so they can see what good they’re doing!