Maria Rose

Bye-bye Blogger

2007-03-05T11:27:00.000-07:00

I've moved the blog over the Maria's new website. You can now find it at this new location. All the old posts are over there - I think. I managed to delete one by accident but recreated it.

I'll keep this blog open for a while but all new updates will be at the new location. Update your bookmarks accordingly.

Go Daddy!

2007-03-04T22:34:00.000-07:00

Last week I was in Lander, Wyoming all week, so Manolis was alone with Maria for four nights, and guess what? They did great! In fact, he got her to bed earlier than I usually do. He seems so relaxed about staying with her now, such a difference from even a few short months ago.

Another exciting thing: it's been 2 or 3 weeks since Maria moved into her own room and she continues to sleep so much better than when she was in my room. She seems to get tired shortly before we put her to bed, whereas before, she never seemed to get tired. Now, most nights she falls asleep within 15 minutes. Just blows my mind!!!

I'm trying a new thing now recommended by the feeding therapist --it's called poop goop and consists of figs, prunes, honey, and senna powder. It's for constipation. Only 1/4 t per day. I didn't follow the recipie exactly, so I don't know if I messed it up or not. You're supposed to chop up the figs and prunes together, heat up the honey (or molasses), mix in the senna powder, remove from heat, then add the fruit. I mixed the honey in with the fruit to the food processor to chop everything up, then put it on the stove and added the senna powder. It became so hard that I thought I was going to break the wooden spoon... We'll see if it works or if I need to try again.

Maria's new site

2007-03-03T14:46:00.000-07:00

Maria's website has moved to a new location at mariarose.net. It's the same site, just a different address. I'll be moving the blog over in a few days but I'll have a link from here.

Blog glitches

2007-03-01T21:10:00.000-07:00

There are a few problems with the blog right now, such as Maria's picture no longer showing up. The reason is 90% "Blogger sucks" and 10% "Uncle Andy is an idiot". It's nothing critical but it also isn't something I can easily fix. Everything should still work though. I think.

California Dreamin' & Solo Sleepin'

2007-02-21T22:50:00.000-07:00

Maria & I went to California for almost a week to visit Auntie Rose, Uncle Paul, and cousin Amelia. Amelia is a year younger than Maria and although she has played with other kids before, the other kids initiated the play. So along comes little Miss Maria who doesn't initiate and Amelia didn't know what to do except be shy and cry whenever we brought Maria near her. By about the 4th day, Amelia would look at Maria, but no interactions and huge jumps in development like I was hoping for. Oh well, maybe next time.

We had a pretty good time, considering. Maria was sick quite a bit of our vacation, she puked a lot, had a fever a couple of the days, and slept a lot, so we didn't get out and do as much as I wanted to. We 3 girls (Rosanne, Maria, and I) got somewhat caught up on our sleep. Maria slept really well at night, and consequently, so did I. Rosie's been overworked lately, so the extra sleep helped her, as well.

Flying is a bit of a challenge with Maria, but it gets easier each time. I get more experience holding her while folding up or down the wheels of the Sit 'n' Stroll (stroller/car seat combo), and more assertive asking the alleged flight attendants to help me because I can't carry Maria and the car seat down the aisle at the same time. It's amazing how snippy and unfriendly they can be--do they not realize they're supposed to attend to their paying customers??? It helps that Maria is a good traveler!

So now for the most exciting news!! Maria, at almost 2 yrs and 8 months, finally is sleeping in her own room!! While we were gone Manolis moved the crib into her room (and cleaned up the many puddles of cat puke that were hiding under the crib...). She's slept in her new digs only 2 nights so far, but she's done great--she's falling asleep faster and staying asleep longer than when she was in our room. Plus, now I can use the treadmill at 9pm and play on my laptop when I go to bed w/o bothering her. I just hope this blissful calm lasts.

Maria sucks! But in a good way.

2007-02-20T10:08:00.000-07:00

Maria's off visiting her Aunt Rose right now and gets back tonight. She went through something yucky last weekend and they had to cancel the craniosacral appointment.

Last Thursday I took her on a walk down to Starbucks. I brought the straw sippy cup since she's been getting better at that. I filled it up and handed it to her. She grabbed it, shoved the straw in her mouth, and started gulping down. She got nine ounces from that cup while before she's never gotten more than two! It was very exciting. I honestly wonder if she might get completely off the bottle soon. The sippy cup is easier for her to handle and she seems to like it.

She's gotten better at back-and-forth babbling with me which is an important milestone. I think she MIGHT have made the milk sign the other day so maybe she's starting to get the hang of this communication thing. It's just so hard to tell sometimes.

The PT gave us some tips on getting her to sit that seem to be working. She sits better when she has something to lean on like a table. We have this little lap table that is the perfect height for her when she sits on the floor and she can sit at it for long periods when she wants to. We give her stuff to play with to keep her amused and she can manipulate things while keeping herself supported with her elbows.

We are concerned with some things that have been going on here in Arizona. We had been thinking about sending Maria to the Foundation for Blind Children for preschool this fall, which is a private charity. Well, there may not be a preschool program. The Arizona School for the Deaf and Blind, which is a state agency that gives money to FBC, recommended to the legislature that they cut off funcing for the FBC and the legislature agreed. I'm still baffled why a state school for the blind would be sabotaging a charity for the blind and there is apparently all kinds of internal politics at work here. The news stories have been a little confusing. The legislature has cut their funding and it's too late to get it back, but they are saying they can still get funding from the school system. However that would be on a per-child basis rather than a large sum for several children, which is likely to make it harder for them to plan their preschool program. It's all a mess.

Honestly, I feel sorrier for the employees than the kids. The kids can go into the public school system, but the FBC employees may be really screwed. Since they were being funded by the state they were getting state benefits, but not any more. People who've been working there twenty years just saw their state pensions go up on smoke a matter of months before retirement. Yikes!

Cathy had already been leaning toward putting Maria into public school rather than FBC anyhow, since her school district prefers getting the special needs kids early so they can better evaluate their needs by the time they hit kindergarten. So either way, this probably won't affect us much, but it's still a bummer for a lot of other people.

Maria can't sit still

2007-02-09T14:58:00.000-07:00

Maria seems to have made a big jump in her vision. The way she responds to objects and people is different and I can't really explain why. I think that's a big part of why she's so motivated to move around.

Cathy and I were talking about Maria's sitting (or lack thereof) last night. We've come to the conclusion that Maria is actively fighting learning to sit. It's not that she can't; she won't. Sitting is passive and she wants to be active. Rolling, army crawl, and standing are much more interesting to her. We need to find the right motivation to show her sitting is good.

She had lost interest in standing for a while, but lately she's back to it. She also keeps trying to move her feet and walk, though that's quite a ways off. I was wondering this morning if, as her vision improves, she is more aware of people and the way we get around. Hydrocephalic kids often have trouble with gross motor skills and perform better if they have a younger sibling they can imitate (shh - don't tell Manolis since he still wants another baby). Maria may be observing us walking and is trying to imitate.

But, since every silver lining has a cloud, there is one problem with her standing. She is standing on her tiptoes rather than flat-footed, which is not good. At rest we've been noticing she is pointing her toes rather than keeping her ankle bent. We may need to start keeping the AFOs on her for periods during the day rather than just at night. But since they interfere with crawling and other activities, it's a tricky balancing act of too much vs. too little.

She's getting better at drinking through a straw. She seems to be a bit bored with the open cup and doesn't drink from it as well as she used to, and I suspect the lack of control is part of the problem. We have a sippy cup with a built-in straw that she is able to get a little fluid out of and it seems like the best drinking skill to be pushing since it combines independence with good oral-motor skills. She still gets all but a couple ounces a day from the bottle, and bottle feeding doesn't build up the mouth muscles in the right way.

We are concerned with her lack of communication skills, particularly the way she doesn't really seem to even hear voices. There are a couple of words she sort of might possibly kind of understand, but even those tend to be reinforced by actions so I'm not sure it's really the language. The music therapist says she has a couple of kids who can't use normal speech, but they can converse through singing. Music comes from a different part of the brain than normal speech and speech therapists have often been puzzled by the fact that severe stutterers can often sing just fine (anyone remember Mel Tillis?). We are glad she's getting music therapy since it really seems to help, and we like the new music therapist.

Maria sees the craniosacral practitioner Sunday and that will be interesting.

Making Faces

2007-02-07T23:34:00.000-07:00

Ha! I can tell that Andy is working more because recently I've been keeping the blog up more than he has (for once). Plus there was that pesky computer mishap he had, but I won't dredge up ugly memories... Maria is doing something very cool lately. She's been smiling a lot more, especially when we stick our faces in her face. She sometimes grins at her dad when he's not even touching her! Sue (nanny) told me today that there's a face Maria only makes when I'm there--she (Maria, not Sue) opens her mouth with a big grin and squints her eyes and wrinkles her nose. The cool thing is that she appears to be mimicking me! That's one of those things that babies are supposed to do when they are very young, but she's never done it much and certainly not consistently. But she seems to do this over and over and over again. It's very cute!!!

The other thing she's been doing a lot more is moving. She's been rolling a lot and lately she'll be on her tummy and grab the edge of the rug or blanket or sheepskin to pull herself along; kind of like an army crawl, but more like an army pull. We're having to be much more vigilant now about not leaving things around that she can choke on.

The transition meeting with the school district is scheduled for early April. gulp! So many questions, so many insecurities, so little time.

One of the latest things I'm freaking about is Maria's lack of independent sitting ability, so we've been working on that a lot. Our other emphasis has been communication. That's why her making faces is so exciting. The therapists all have lots of ideas about what to do to enhance communication--use sandpaper as a tactile symbol for "all done"; put photos of her bottle, food dish, toys, diaper, bath stuff around and see if she notices them and points to the bottle when she wants milk; put the pictures in a book and show them to her, give her choices; put the actual objects in her little enclosure and respond if she grabs the dish or bottle; use a "Big Mac" switch that she can push and we program it to say something, like "I'm hungry" or "I'm wet"; take her canvas drawers and fill one with kitchen things, another with bath things, another with bedtime things, etc, and let her play with them. All of this sounds just fine and dandy, but which will and which won't work? Is it worth the effort? What's the point? ya know?

We're going to meet another energy healer this Sunday. She sounds great on the phone. She does craniosacral work, which I've been told might work on Maria, and Qi Gong like the chiropractor we've gone to who did magical things. So we'll see. I'm cautiously optomistic and moderately hopeful. What the heck?!

sick or Sick?

2007-01-29T11:27:00.000-07:00

I'm so deep in denial that I don't even really remember the recent illness Andy mentioned. I think partly because it was more than a week ago and partly that now she really is sick... I could tell Maria didn't feel well yesterday, she was quiet all day and was doing that thing with her mouth I don't like, where she purses her lips into an O shape and the tip of her tongue sticks out a bit. She ate breakfast and lunch, drank ok, until about 5 or 6, then she didn't want to drink anything and started vomiting. Her breakfast came up-- cherries and blueberries (nice, huh?), but not her lunch (pureed zucchini and winter squash, which probably digested faster). So I assumed (hoped?) it was just that the cherries didn't sit well with her. Everytime I tried to get anything down her, she'd puke again. I did a lot of laundry this morning!

She slept fitfully, but no more vomiting. This morning she had a pretty good fever (102), but I've kept it almost down to normal by undressing her (much to her father's dismay, he hate's it when she's not covered up and bundled up) and giving her a bit of Tylenol. She's dozed most of the morning and has actually drank 12 oz milk, which is good. I can tell she feels really crappy by looking at her eyes. She's flushed too, probably the fever. Soooo, when it's a typical kid, the mom worries, but when it's a kid with hydrocephalus, is it just some little harmless virus or is it something with her shunt? Kijana (cat) has of course been laying on Maria to make sure everything's ok.

Oh yea, when we took a walk yesterday, a pit bull came out into the street toward us. It wasn't acting aggressive, but it's a pit bull. I told Manolis not to look at it because they take that as a sign of aggression and the old saying "ignore it and it will go away" fortunately worked in this case. (The 2 attacks in the past week in Phoenix were fresh on my mind...)

Long time no update

2007-01-28T12:05:00.000-07:00

Maria's been a bit "off her feed" lately, though she seems to be coming back. We think she was nursing a minor flu that's been going around but we all get nervous when she doesn't eat.

The new feeding therapist is shocked by how quickly Maria is progressing. Although she's had a bit of a setback handling chunky foods, since we tended to feed her more mushy stuff while she was sick, she's made great progress in other areas. She can drink decently from an open cup (though we have to hold it) or a straw, and knows to close her mouth so it doesn't dribble out. She still gets most of her liquids from the bottle, but it's progress.

The feeding therapist is OK, but we were really spoiled by how good her last one was. I explained to her that giving us a bunch of new activities probably won't work since Maria's schedule is already so busy. If she focuses on activities that we can do in parallel, like using an open cup rather than a bottle during meals, is much more helpful. She seemed receptive to that.

We lost Maria's music therapist to another job where she doesn't have to drive around so much. She had a friend who took over for her, but we haven't had much of a chance to see if she's any good. The feeding therapist mentioned that she also knew a music therapist who does home visits if this one doesn't work out.

During Maria's sickness, she also slacked off on standing and sitting up, but she's REALLY gotten into moving. She rolls around a lot and sometimes pulls herself forward toward objects. Cathy's had to put up a baby fence to keep her off the tile - she just loves to lick the tile.

I'm sure there's been lots more but it's been so long since an update, I better get this up before I forget.

Hair Cut!

2007-01-16T07:01:00.000-07:00

If you don't include the hair they trimmed (and saved for me) to put in the shunt the day after Maria was born, Maria got her hair cut for the first time yesterday. And keeping in the family tradition, they only trimmed it a little bit, so you can't even really tell it was cut... I thought she should have had a bit more cut off, but it was hard to hold her and see what was going on at the same time. The woman was very nice and gave us a "certificate" with a Polaroid and lock of hair attached.

In my way of Why do 5 things when we can do 10? we also went into the back room for photos, since we didn't have Christmas pictures taken. I wasn't super thrilled with the photos (haven't gotten them back yet, so we'll see), but she did a great job with Maria and her abilities (didn't expect her to stand, gave up pretty quick when she saw Maria wasn't going to sit, etc). The place is called Snip n Snap, it's in Surprise, and caters to special needs kids--so they don't just turn up the TV loud and expect that will entertain your kid. I appreciated their time and patience. But, getting up a bit early, having a bottle, breakfast, a bath, a couple outfits, a therapy, hair cut, and long photo session was a bit much for Maria. She got a bit cranky during photos (as did her Dad), and fell asleep for her 2nd therapy appointment that afternoon with the physical therapist.

China Cat Sunflower

2007-01-10T22:17:00.000-07:00

Today I had to take my kitty of almost 18 years to the vet to be put to sleep. Such a sad day. Fortunately, Maria's kitty, Kijana, is still going strong. Maria and China Cat never really bonded for some reason, probably because China was already pretty old when Maria was born and she didn't have the patience that Kijana does for being grabbedand fur-pulled.

So I'm sure Manolis will be much happier, no more cat sleeping on the pillow, no more cat food and water bowl on the night stand between my side of the bed and Maria's crib, no more meowing in the middle of the night. I guess I'll get more sleep now. I'll have a lot more money--she got a little bit expensive the past year or so. I will miss her using my cheek or my hand as a pillow, though.

It's been a rough week. The daughter of a friend of mine took her life this past weekend. Between that and China Cat Sunflower (I named her after a Grateful Dead song), it's really been a rough week. At least Maria's doing ok.

Walking-good, Biting-bad

2007-01-07T23:12:00.000-07:00

Maria has been progressing quite steadily lately, as we've said more than once. With this development comes good and bad things. Let's start with the good--yesterday and today, I was holding Maria in a standing position by grabbing her just under her arms (or maybe it was by the upper arm, I forget), anyway, I was rotating her body so the right side went forward, then the left side. On her own, Maria was picking up her feet and sorta like walking!! I don't know if that makes sense, but she took lots of steps on several different occasions, not just 2 or 3 steps one time, so it wasn't a fluke. I think if we keep doing that type of thing, it'll program her brain and will help her walk.

And now for the bad--2 times now, I have caught Maria biting on the electrical cord for the back massager we have on the glider chair in the living room. You've heard how hard she bites and how sharp her teeth are...could've been a very bad thing. I finally moved the cord after the 2nd time (duh). She must get that from Kijana, who, too, likes to bite cords, wooden bedside table corners, Maria's toys, etc. As "troublesome" as she's becoming (Maria, not Kijana, Kijana's been a trouble-maker for years...), it's still exciting--just a few short months ago she wouldn't have even thought to bite a cord or peek through the window of her stroller or roll all around the living room or grab nearby toys and play with them.

Happy New Year!

2007-01-03T22:52:00.000-07:00

We had a nice quiet New Year's Eve--except for Maria's not sleeping. She had several good sleep nights, but the past 3 (and tonight looks like another one), instead of sleeping, she fusses, pants, and kicks her legs. It's like she's uncomfortable, but nothing seems to help. Sometimes she calms down with food, other times she pushes it away. Same with juice, milk, leaving her alone, being with her, nothing works consistently. I'm not aggressive enough with the melatonin, I don't like to give it to her after about 9pm; even so, one night I gave it to her at about 8, it took more than an hour for her to go to sleep, then she only slept until 1:30am and was up until 5am. As my sister and I often say, it's a good thing Maria was born to me and not someone else who requires more sleep than I do (although even I will admit that this is ridiculous). But like many problems in the world, I wonder how much we create our own mess. Manolis isn't ready for Maria to sleep in her own room yet, and we keep oscillating between having a small light and no light in the room, and we go in and try to comfort her too much, which at times entails picking her up and putting her in bed with me or if I'm desperate for sleep then Manolis takes her into the other room. I think we just need to leave her alone... but it's so hard.

2007 will be the year that Maria goes to school. Although it's 8 or 9 months away, I'm already anxious about it. She won't get nearly the attention she does now, and she seems to get out of sorts when she's away from home without mom &/or dad. The good part about school, though, will be that she'll be around other kids. The speech therapist was talking about how good it is for special needs kids to be with typical kids, not just with other special needs kids. Maria's probably going to be just with other special needs kids the first couple years at least, but something to think about. We're supposed to have a transition meeting soon, so I can meet someone from the school district and find out our options - oh joy!

Although we have agreed that I'm somewhat out of denial, it still gets me when the therapists and doctors say things like "I don't think you'll ever have a conversation with her like we're having, but you'll probably be able to talk about simple things." or "I'm not convinced that she'll be non-verbal. She might string a couple words together, like 'more food'". or "She probably won't be able to walk across the parking lot, but she will probably be able to walk from the chair to the table." Do they mean in the next couple years? Are they talking full potential? It's like a sledgehammer to various body parts when they say that stuff -- and although they say it with much kindness, in the words of Peter Boyle: "holy crap".

Maria is doing better at standing, she seems to enjoy it. We stand her against a plastic fence thing we have in the living room, so she can hang her arms over the top for more support. Sometimes she even stands w/o us holding her for a couple seconds. Not a whole lot of progress on sitting, some progress on the crawling position, and she's been rolling a lot--mostly to lick the tiles (nice, huh?), but hey whatever it takes!

I know I'm her mother and of course I think she's the greatest thing EVER, but I swear, even w/o my biased eyes, she gets more beautiful every day. It's astounding. When she's an adult, I think even Angelina Jolie, Jennifer Anniston, and all the other beautiful people will pale next to her; she might even hurt people's eyes if they're not strong enough to experience that much beauty at once. Plus she always wakes up in a happy mood, and stays that way for a good part of the day -- you can't beat that!

Christmas

2006-12-29T09:21:00.000-07:00

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

2006-12-21T13:50:00.000-07:00

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

2006-12-21T00:28:00.000-07:00

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

2006-12-12T16:24:00.000-07:00

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

2006-12-08T09:14:00.000-07:00

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

2006-12-02T00:03:00.000-07:00

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.

It's a pirate's life for Maria

2006-11-30T16:21:00.000-07:00

I know that today isn't International Talk Like A Pirate Day, but in honor of today's news we will run the entry through the English-to-Pirate Translator.

Arrr. T' good new, maties, be that Maria doesn't have t' get glasses...yet. However t' doctor be concerned that her eaye aren't workin' together like they should, so wants her t' wear a patch over one eye an hour a day. It isn't lazy eye, but I think she's movin' in that direction. He wants t' stop it before it gets thar. We go aft in two t' three months and she will probably get glasses then, ye scurvy dogs. Arrr.

Maria's developmental leap

2006-11-29T18:26:00.000-07:00

One of Maria's therapists was saying that this latest jump in development is normal. All kids make sudden progress around the age of 2 1/2. I was surprised that Maria would have the same jump considering how behind she is, but apparently this is more of an emotional leap. It's similar to how Maria is going through the terrible twos right now - well, her sweet and calm version of the terrible twos anyhow. It's an emotional stage rather than a cognitive one.

Maria has her first meeting with the new feeding therapist tomorrow, then her eye appointment where she will probably get a prescription for glasses. The vision therapist says that Maria will probably realize that the glasses are helping her so won't pull them off so much. We will be able to attach her hearing aids to the glasses so we won't have that string getting tangled everywhere.

Quick update

2006-11-22T14:04:00.000-07:00

I'm not sure why it's been nearly two weeks since the last update. Things have been kind of busy but I didn't think it had been that long.

Maria's visiting her grandpa for the holidays and will be seeing her cousins tomorrow. The trip has her a little out of sorts and she's not eating or sleeping as much as she should.

She's still in her "good progress" phase. The AFOs seem to have helped with her foot position and standing. She can even stand up from a sitting position if we support her for balance and she's in the mood. She's also really been into hugging lately. She had her first Cheetos and really seemed to like the crunch.

She has her first meeting with the new feeding therapist on the 30th. She also has her appointment to get glasses that day. Keeping the glasses on her will be a "fun" little challenge.

Making giant leaps

2006-11-10T13:26:00.000-07:00

Both the speech and music therapists commented that Maria is more interactive and aware than they've ever seen her. She's in a really good place right now and seems to be making large advances. Music therapy went really well yesterday. From her belly she pushed herself up onto her elbows, she reacted to some very soft sounds she was making with the guitar and drum, and she grabbed my hand and pulled it over to the guitar like she was trying to get me to play. There have also been several incidents when she's eating (she's really been into self-feeding lately) where she seemed to be trying to put the spoon in my mouth.

In the "bad news" column, we are starting to wonder if one of her issues might be cerebral palsy. When we got Maria's AFOs the orthotics specialist asked if she had ever been diagnosed with CP. That question caught both of us by surprise. Cathy asked the physical therapist about it and the PT hemmed and hawed and said, "Well, it doesn't really matter since it wouldn't change her treatment." That pretty much says "yes" to me. Cathy got a book yesterday about teaching motor skills to kids with cerebral palsy and similar disorders. One chapter talked about the typical movements and reflexes in CP and many of them seemed to match Maria. The PT is right - it doesn't really matter. Cerebral palsy refers to motor disorders due to brain damage and is more of a descriptive term than a precise diagnosis. Still, it's a little disturbing.

Neurosurgeon Update

2006-11-08T08:35:00.000-07:00

Maria went to the neurosurgeon yesterday for a follow-up to the hospital visit. He said we don't know what happened and probably never will. If she acts like that again, we will observe her again (in the hospital??), and if it happens repeatedly, then he'll do surgery--exploration or revision or shunt replacement--none of which sound appealing.

I asked about her ventricles being slightly larger than before, but he wasn't concerned about it. He said it was good that the EEG didn't show any sign of seizure. And that was about it.

I told Uncle Andy that if the doc told us any bad news, it was his fault (Andy's). Looks like he's off the hook, this time. (There have been times in the past where Andy hasn't come to an appointment and they say bad stuff, which naturally must be his fault for not being there.)

Maria had another bad night last night. She (and we) was up most of the night, flailing. We tried the usual things: diaper change, cereal, milk, Tylenol, holding her, leaving her alone; and unusual things: homeopathic calms for babies, homeopathic colic pills. She finally fell asleep at 4:30 or so. Now she's sleeping soundly. She also vomited a bit. I'm sure it's nothing, but before she went into the hospital, she had a couple nights that were very similar to this...