Archive for December, 2006


Friday, December 29th, 2006

Maria got a big haul for Christmas. She got a lot of things that glow or beep or vibrate as we continue our constant assault on her senses. She got one of those big activity cubes that are common in pediatrician’s offices, plus lots of stuffed animals and other toys.

She’s been getting up on her elbows lately, sometimes just to look around and sometimes to play with things. She’s getting better at drinking from an open cup, though it’s still a little labor intensive. Her chewing is coming along nicely, especially with crunchy foods since she loves the feedback.

She had a vacation this week from everything but feeding therapy. Next week will be light, though I think she has at least a few therapies. Then she’s back to her usual busy schedule.

More feeding therapy

Thursday, December 21st, 2006

Maria saw her new feeding therapist again today. It’s been three weeks since the last time and the therapist was shocked by how much progress Maria has made. For example, she’s getting good at drinking from an open cup. She can’t hold the cup herself, but if we put it to her lips she knows to suck a little liquid in, then close her mouth so it won’t dribble out. She tires or gets bored pretty quickly, but I’m trying to use the open cup at meals to give her a break from the bottle.

The feeding therapist also said that Maria is already meeting a lot of her goals after just two visits, which surprised her. I told her Maria used to do that to Norma (her last feeding therapist). Sometimes they just can’t keep up with her.

The therapist showed a few new tricks we can use…and a few we can’t. I explained to her that anything we have to do in addition to Maria’s normal schedule, like taking a block of time to do nothing but use an open cup, may or may not get done. Things we can do in parallel with existing tasks, such as using an open cup rather than a bottle during meals, are much more useful to us. She seemed receptive to that and said she’d focus on those kinds of things in future sessions.

Obviously, Maria is still in her fast-development stage. I saw differences in the way she moved and behaved when I picked her and Cathy up at the airport, and it had been only a week since I’d seen her. We hope she keeps up this pace for a long time.

Walla Walla, WA

Thursday, December 21st, 2006

Maria & I took a little trip to one of towns where I used to live–Walla Walla, Washington. The husband of a friend of mine died suddenly in a car accident right before Thanksgiving. They were married for 31 years… We thought we’d go to distract her for a few days. Auntie Monica, my famous artist friend, picked us up in Spokane and let us drive around her Honda Element. Awesome car. Awesome friend.

It was pretty cold in Wally World, windy at times, often foggy; now I remember why I moved… But it is still a beautiful town; if you’ve never been, you should go see it. We went by my old house on Celestia Drive, looks the same except the trees and bushes are bigger. Had a couple cappuccinos from my favorite barista. Went to a couple wineries and bought wine (there are more than 100 wineries there now!! When I lived there [1994-99], there were less than 10.)

Maria was great, as usual. Such a good traveler, whether it’s in a plane, car, stroller, or being carried. She got to play with Kathy’s dogs, cats, and a donkey! She didn’t play with the cows, sheep, or goat, however. She even seemed to enjoy the cold weather. When it was windy, she put her face toward the wind, like a dog in a car, rather than the usual sharp intake of air and surprised look on her face.

We invited some friends/old co-workers over for a mini-reunion. It was great. Why do retired people look so much better (healthier and happier) than working people?? Sunday we visited another friend/old co-worker and her husband and two boys. She was so good with Maria! It was like she knew the magic buttons to push, like some of her therapists. Maria did whatever Jodi asked her to (loosen up your legs, don’t thrust your head back). It was nice to watch, but makes me sad that we live so far apart.

I think we succeeded in distracting Kathy for a few days. She’s got a tough road ahead, but has lots of good friends who give her lots of chocolate, and several loving animals to keep her company. I think the trip was also good for Maria. She’s been in a great mood lately, she’s rolling like crazy, and she’s been pulling herself up almost to sitting!

Developmental evaluation

Tuesday, December 12th, 2006

Maria had her semi-annual developmental evaluation yesterday. It wasn’t the usual soul-crushing “she can’t do this, she can’t do that” thing that it usually is.

Her head circumference is, as always, quite low on the chart. It’s something like the 4th percentile, just above officially being called “microcephaly”, but she’s following the growth curve so the doctor wasn’t concerned. Her weight and height are pretty normal for her age. She didn’t perform well for the doctor since she was tired and had already had a long day having seen the dentist and her vision/hearing therapist (not to be confused with her vision therapist or her hearing therapist). Luckily the doctor wasn’t one of those “if I don’t see it then it isn’t real” types and believed us when we told her all the great things Maria has been doing lately.

The doctor said the two things that are really important right now are standing and communication. The standing is important because they are still concerned that her hip joints aren’t going to form right which will lead to problems later. Communication is important for so many reasons and Maria seems to be right on the brink of starting some kind of communication. That doesn’t necessarily mean speech or sign. It might be as simple as having her point to things.

But, as Cathy said after we left, we’ll add that to all the other things we absolutely have to do right now. Hot packs on her eyes so she doesn’t have to have surgery again. Eye patch so she doesn’t get lazy eye. Eating and drinking so she’ll pack on the weight. Holding the bottle and self feeding to give her independence and free up our time. And on and on and on.

This is also the doctor who previously suggested using melatonin to help Maria sleep. Cathy and I have each used it once and it worked very quickly both times, but it’s a little disconcerting that she sleeps so deeply. I think we are having phenobarbitol flashbacks. She suggested using the melatonin just one or two nights a week. Not only is sleep important for development, but Cathy is on the ragged edge all the time as well. I think it’s a good idea – hint, hint Cathy 😉

We talked a little about Maria’s poor spit management, particularly that she tends to choke. She’s nowhere near as bad as she used to be, but there is the danger of aspiration, and it’s just as dangerous to aspirate on saliva as on milk or juice. Her first suggestion was some drug that has very few side effects. Her other one was to use botox injections to paralyze half of Maria’s salivary glands. Um, let’s not do that one. But Maria’s spit-choking is pretty rare now so we’re going to ignore the possibility of drugging her up for that.

All in all, not a bad visit.

Maria’s a big, big girl

Friday, December 8th, 2006

Maria has gained a pound in the last month, so we’re feeling a little better about that. We aren’t sure HOW she has gained the weight, because she hasn’t been eating that well for the last week or two. She was sick earlier in the week (fever, not eating or drinking, sleeping a lot) but just for a day.

Her burst of development continues. She’s using her fingers in very subtle ways. When I clap her hand against mine, she no longer clenches her fist but opens her hand so that it makes noise. She can find things that she drops and is much better at feeding herself small bits of food with her hands. She frequently tries to pull herself up into sitting and standing positions. She doesn’t arch back so much when she’s sitting and standing so is more stable. She shakes maracas and strums the music therapist’s guitar. She’s making more syllable-like sounds and occasionally babbles back and forth with me. It’s all very exciting!

Patches and Love Bites

Saturday, December 2nd, 2006

I’ve now patched Maria’s eyes twice and it’s gone pretty well. The right eye was better than the left, which is not what we thought would happen. We’re supposed to do one eye for 30-60 min, then the other eye the next day. I’m also supposed to use the steroid eye ointment again because Maria’s getting more of the chalazion bumps. If they don’t go away in a month or so, she’ll have to have surgery again. The doc told me this steroid eye ointment can cause glaucoma so we have to be cautious with it. Great!

I took Maria to work with me all day today and she was very good until the last half hour or so. Sue, the nanny, is in Hawaii with her mom who is quite ill. She was hoping to be back today, but she needs to spend some more time there. Andy has been watching Maria 3 days/week, which is a lot with trying to work also, but it’ll be fine for the short term.

The husband of a friend of mine was killed suddenly in a car accident the night before Thanksgiving, so Maria and I are going to go visit in a couple weeks. I haven’t been back to the Walla Walla area in more than 5 years. It will be good to see old friends, plus Bob at the Backstage Cafe makes the best cappuccinos I’ve ever had–I even dream about them (really!). It’ll be interesting to see how Maria does in the cold. It will be her 3rd plane ride in 2006. Pretty good for a 2 year old, huh?

We had our feeding therapy with the new therapist Thursday. She seemed pretty good, had some good ideas, many of which we won’t do because of the time factor. We’re supposed to work on straws and open cups and sippy cups with Maria. She got weird, like they all do, when I told them we mix up Maria’s drinks a bit thinner than nectar. They don’t understand that honey and nectar are the same stuff (Simply Thick), but honey is 25cc per 4 oz liquid and nectar is 10cc per 4 oz. Simple. So we measure out the liquid and the thickener, using a good digital scale, and we get a consistent viscosity of liquid. Every single feeding/speech therapist, except for Norma, has freaked about that (calmly). I’m going to try and give her an open cup with meals. Speaking of fluids–little Miss Maria has not been drinking enough again. Today is at least the 3rd day of her drinking about half of what she should be. Our pediatrician appt is Thursday to see if her weight gain is ok. Her legs sure look a lot thinner than they used to be.

Now for the love bites…as you know, Maria likes to bite periodically. And she likes to play with Kijana, the cat. The other day I heard Kijana making a noise, so I looked over and Maria had Kijana’s paw in her (Maria’s) mouth, and was biting it. If it wasn’t so scary it would have been cute. Actually, it was pretty cute. I wanted to take a picture or a video, but Maria bites quite hard and Kijana’s claws are quite sharp. Never a dull moment.