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...

Pediatric Followup

2006-11-06T17:44:00.000-07:00

Maria had a followup with the pediatrician today. The big concern is that she is still at the same weight she was over a year ago. We need to start adding butter, cream cheese, etc. to things she eats and try to get her to eat more. She said "no more crackers" because they are not calorie-dense enough, which is a pity as they are great for Maria to practice picking up. Cathy goes back in a month and if Maria's weight isn't up the pediatrician is going to send them to a nutritionist.

She also said Cathy needs to check Maria's heart rate when she is asleep to see if it is still fluctuating like it was in the hospital. If it is then she will order an EKG - because god knows we certainly need ANOTHER diagnosis, ANOTHER doctor, and ANOTHER test.

Halloween

2006-11-02T23:14:00.000-07:00

For Halloween I dressed Maria up as a princess (what else?). Doesn't she look sweet? Not sure if she was into it all that much, but I sure enjoyed it.

I took her to the door just a couple times to hand out candy, but it was too much of a challenge to hold her, open the door, and hand out candy; plus none of the kids noticed her, so I figured it wasn't worth the hassel. She was getting pretty sleepy by that point anyway since she hadn't had a nap all day. I did notice Maria seeming to perk up a bit when kids were at the door. She seems to be noticing other little kids more, I think I first noticed it on the cruise. When she hears them talking or screeching, she does her cute little body wiggle excitement thing. I've got to get her around other toddlers more often.

I thought Susie (reporter) did a good job on the article (even though she called me a bureaucrat from a state agency). The part about Maria at the end made me cry. I love the picture they used. They were going to come to our house to take some photos for the article, but we were still in the hospital, so Andy sent them some to choose from. Now if only the state would take some of the article to heart and change what they're planning for the early intervention program...

Maria is famous

2006-11-02T12:32:00.000-07:00

The article that features Maria came out today. It is called "Broken". They talk about her towards the end of the article and use her picture.

EDIT: Fixed the link to Maria's article

Back to her old self

2006-10-31T09:16:00.000-07:00

Maria is back to eating and drinking fairly well. She's more alert and happy than she has been. She may be getting some pain from her two-year molars, but we've been blaming her two-year molars for about a year now. Things seem to be getting back to normal.

I can't remember if we've mentioned this before, but Maria's going to be famous. A reporter interviewed Cathy regarding an article for the Phoenix New Times on how Arizona is gutting their early intervention program. They are going to use Maria's picture in the article. It should come out soon and I'm hoping there will be an on-line version I can link to.

Home at last

2006-10-29T12:33:00.000-07:00

One of the reasons Maria wasn't home yesterday is that the hospital said they were paging both the on-call neursurgeon and Maria's regular neurosurgeon and neither one was answering. Well, Cathy saw the on-call NS in the cafeteria this morning and he was surprised to see they were still there. She said the hospital had been paging him and he said he never got the page. They also said that when they paged her regular NS a different doctor called back, so it sounds like they didn't have the correct pager number for either doctor. Gee, I'm glad she wasn't bleeding to death.

But all that nonsense has been taken care of and Maria is finally home.

A prisoner of the bureaucracy

2006-10-29T07:36:00.000-07:00

Maria's EEG was fine. It showed no seizure-like activity at all. She's doing better, though still not 100%. All of the doctors said that she was OK to go home yesterday.

So is she home? No.

Despite the fact that the doctors think she should go home, none of them are willing to step up and sign on the dotted line. They are all afraid of actually taking responsibility so Maria is still in the hospital. They are basically defrauding the insurance company out of a medically unnecessary day of hospitalization because none of them have the guts to make a decision.

They are going to try again today. It's pretty much a coin flip, since it's the weekend and god forbid there should be doctors available in a hospital on a weekend.

And, as long as I'm ranting, I just want to say that Blogger sucks. I've been trying all morning to get this entry posted and I keep getting errors. This is not a new situation and I really get tired of how unreliable Blogger is. One of these days I'll move this blog to my site, but that requires a fair amount of effort so I haven't found the time yet.

In less ranty news, there are some new pictures up.

Still in the hospital

2006-10-28T19:02:00.000-07:00

Maria's out of the PICU and in a normal hospital room. When I talked to Cathy this morning the neurologist hadn't look at the EEG yet. We still have no idea when they are going to send her home. I keep saying, "probably tomorrow," and I'm always wrong so I won't say it again.

Out of the ICU...maybe

2006-10-27T17:28:00.000-07:00

The NS has ordered Maria moved out of the ICU into a regular hospital room. He wants to keep her over the weekend, but might let her go early since he knows Cathy and knows how well we watch Maria. Her heart rate has started to play games again and she never did start drinking very much. She's still sleeping a lot but not as much as before.

Right now Maria is getting an EEG because another theory, since they still have no idea what is causing this nonsense, is that she could be having seizures. The NS was talking about doing exploratory surgery to see what's going on with the shunt, but has decided against it - which is good because I think Cathy would have said, "No way!" unless there was a really good reason to poke around inside her skull. This NS isn't as knife-happy as many surgeons are.

Maria doing better

2006-10-26T15:45:00.000-07:00

Maria is still in the ICU but is doing much better. She is awake and eating. Her heart rate has stabilized and all of the bacteria and virus tests came back negative. They still have no idea what happened, but it appears to be over. They are going to keep her one more day but, barring any sudden problems, she should get out tomorrow.

No new info

2006-10-26T06:44:00.000-07:00

I'm leaving shortly to head down to the hospital. I want to be there when the NS makes his rounds. I don't know how long I'll be there, but I'll update again later today.

Maria's little emergency

2006-10-25T09:14:00.000-07:00

Sunday night, Maria was acting like something was bothering her. She kept flailing around and didn't sleep all night. We didn't really think much of it at the time, but that was probably the start of whatever is going on right now.

Monday she had her barium swallow. She ate fine that day, but it was very hard to get her to drink. We tried milk and different juices and she'd drink a few swallows then very pointedly push the bottle away. All day she drank about 12 oz. This also made the barium test a little tricky, but Cathy was able to get her to drink enough that they could get results. We also noticed she was hot but never got around to taking her temperature. Maria is frequently hot and sweaty and we've just gotten used to it.

Tuesday things got worse. Cathy called about 5 pm to say Maria had drunk about 2 oz all day and was throwing up everything she ate. She hadn't passed the barium (barium makes white poop and it's obvious when it's gone through) which was a bit of a concern. She was also running a fever of about 101. Cathy decided to call the nurse hot line. The nurse pretty much went, "OH MY GOD!!! Get to the ER right this second!!!" She was concerned about dehydration, but also about the barium sitting in her system.

So they headed down to children's hospital. Chest x-rays and urinalysis were fine, but her blood work showed an infection. A shunt series and CT scan showed the shunt is working fine but they decided to keep her overnight for observation. They are giving her IV fluids and the on-call neurosurgeon is going to talk to Maria's NS this morning. I imagine they'll send her home later today but you never know. I'll post more when we know more.

UPDATE 11:30 am: Not much more to report. The on-call pediatrician noticed her pupils were like pinpoints, but her pupils always do funny things because of her optic nerve problems. She continues to sleep and sleep, and not eat or drink much. Manolis thinks they are going to keep her in the hospital, but I'm fairly certain they will release her today. The neursurgeon hasn't been by yet, which is the visit we are really interested in.

UPDATE 12:30 pm: That pediatrician continues to be concerned, and personally I think is overreacting which is common with pediatricians around Maria. Maria's heart rate has been low and her blood pressure is up a hair. She continues to sleep but woke long enough to take 6 oz of milk (the most she's had in almost two days). The pediatrician is talking about putting her in ICU so they can monitor her more closely. He is thinking there is increased intercranial pressure, though since the neurosurgeon doesn't think so then I doubt it. Maria's own neurosurgeon hasn't made an appearance yet.

UPDATE 1:00 pm: Maria's neurosurgeon came by and he is also very concerned. Unlike the on-call NS, he thinks that her ventricles might be enlarged. However they are comparing a CT scan to an MRI which makes it hard to tell. He ordered another MRI and is probably going to put her in ICU. Based on the results of that, they might tap the shunt which, I believe, checks the pressure directly as well as allowing them to examine her cerebrospinal fluid. Yuck. I guess the little munchkin won't be home today after all.

UPDATE 4:30 pm: Maria is in the PICU now. Her MRI was apparently fine (that message is from the neurosurgeon to the nurse to Manolis to Cathy to me so the specifics are a little sketchy). She's still sleeping all the time, though they can rouse her. They told Cathy not to give her anything eat or drink just in case something comes up that makes them decide to do surgery. As far as I know, they aren't giving her any drugs except Tylenol. Her heart rate continues to fluctuate down to the 55-60 range and they are puzzled by that - I think that was a big part of why they decided to move her to PICU and monitor her more closely.

UPDATE 6:00 pm: Cathy talked to the neurosurgeon. He said Maria's ventricles are larger than they were earlier this year, but about the same size as they were a year ago. Many of Maria's symptoms, like the fever, are NOT symptomatic of shunt failure. He's adopting a wait-and-see attitude. He's not going to tap her shunt because he doesn't think he'd get enough fluid for it to matter. He has reserved an OR for tomorrow just in case but doesn't think he will need it. Maria is apparently awake and smiling now so maybe she's starting to feel better.

Barium and hearing aids

2006-10-24T08:20:00.000-07:00

Maria had a barium swallow yesterday. She did fine with solids and the thick liquid, but had some penetration with the thin liquid (which means it headed toward her airway but didn't actually go into her lungs). So they said continue as before with the thickener and start feeding therapy. This is pretty much as expected since the purpose of the test was an evaluation before starting feeding therapy anyhow.

She also saw the audiologist. The most startling news was that they are going to take her hearing aids away, but not because she doesn't need them. We realized these were loaner hearing aids, but didn't realize that the loan period was so short. It was supposed to be for six months and they got special permission to extend that to a year, but that year is up. So Cathy either has to buy new hearing aids herself (not cheap and not covered by insurance) or go through a state program to get them for free, which means forms and bureaucracy and waiting.

This is further complicated by the fact that they still aren't sure if she needs them. Her hearing threshold with the hearing aids was 65-70 dB, and the threshold without the hearing aids was 70-75 dB. That's a small enough difference that it could be statistical error or fatigue. They are going to discuss it and call next week.

Hawaiian Vacation

2006-10-20T19:00:00.000-07:00

11 days without therapies, devices, etc in a tropical paradise, so why don't I feel more relaxed? Sue (nanny), who's from Oahu, flew to Honolulu with us on Sunday. She drove us around Monday, then dropped us at the cruise ship that afternoon. (We found out later that her mom lost consciousness a few hours later, went to the hospital, turns out she has some sort of mass in her lung that might be malignant, they're not sure yet.)

We went to Maui, Hilo and Kona on the Big Island, and Kauai; rented cars in Maui, Kauai, and Oahu (hate driving in Honolulu). Spent one day before the cruise and a few days after on Oahu. We chose Norwegian Cruise Lines (Pride of Hawaii) because they don't have required formal nights and the meals are "freestyle", which means more flexibility, and the ship is new. The ship was very nice, pretty, clean. Good itinerary. But lousy food and crappy service (American staff).

Maria did awesome, considering she didn't eat or drink as much as normal. Plus, as Andy said, she hardly had any vegetables. Lots of papayas and bananas, but not many soft veggies appropriate for a princess. I did manage to get her some Pediasure, which probably helped, but I wouldn't be surprised if she lost a little weight. The Sit n Stroll we got was the best $200 I spent--it's a stroller that converts to a car seat, airplane seat, high chair. She really seemed to enjoy all the adventure, new places, different tastes, swimming in the ocean, no therapies, no hearing aids, no AFOs. I think she knew we were going home because she slept fine the entire trip, until our last night in Oahu. And she hardly slept on the red eye flight home, so you can imagine we have all been a little groggy the past 2 days since we've been home.

The only semi-troubling thing was how many people commented on how sleepy she looked. I'm sure it's because she doesn't often make eye contact and she's rather floppy, and I know they have no idea, but after a while it's rather tiresome/wearing/whatever is the right word. One time Maria was face down on my legs playing in the sand and a lady asked if she was asleep, so I said, "no, she's just lazy." What am I supposed to say, "no, she's significantly developmentally delayed and can't sit up on her own"? One lady told us about the Hammesfahr Neurological Institute in Florida and how they did wonderful things with her autistic grandson. Something to think about.

As Andy said, fortunately we weren't affected by the earthquake. We'd left Kona the day before and got back to Honolulu after the electricity came back on. I think I felt something on the ship (we were docked at Kauai), but who knows. And, yes I was totally excited about the earthquake and volcanic activity from a geologic perspective. One of the coolest things we did was cruise by Kilauea at night and saw the lava pouring into the ocean--so awesome!!

Quick post-vacation update

2006-10-20T14:20:00.000-07:00

The gang is back from vacation and had fun. Maria liked swimming in the ocean and playing in the sand. She has a fair amount of color in her cheeks. She didn't eat or drink as much as she should have. Cathy said it was surprisingly hard to find milk or vegetables in Hawaii. Maria's eyes are still a little swollen, but the eye doctor said that was normal even this long after the surgery. He still wants Maria in glasses and she goes back to him right before Thanksgiving so might get them then.

Monday Maria has a barium swallow and an appointment with the audiologist, possibly for new hearing aid molds. After that I believe her schedule slows down for a while.

Whole lotta shakin' goin' on

2006-10-16T18:05:00.000-07:00

Just a quickie update. As most of you know, Cathy, Manolis and Maria are in Hawaii at the moment. They were on their cruise and I guess they docked a few hours after the earthquake so they missed the fun. They were going to Honolulu today and had heard the power was out so they are curious how much of a mess it will be. I'm sure the geologist in Cathy wishes she'd been there.

Cathy says Maria's new favorite food is corn on the cob, which she can eat by herself.

Post-op report

2006-10-04T20:30:00.000-07:00

I got the word from Cathy that Maria's surgery went pretty quickly. Maria was sleeping when Cathy called and I'm hoping she just slept most of the day away, since the longer Cathy can keep her eyes patched the better she'll heal.

The doctor said that the oil in the other, non-inflamed glands was still thicker than normal so she is likely to have recurring bouts of chalazion for her whole life. We just have to be aggressive the instant a new one shows up to use the compresses so she doesn't have to go through this again.

He also took the opportunity to give her eyes a better exam since she was under anesthesia. He said that the interior of her optic nerve just isn't there; the nerve is hollow. It may be that it never formed right, it may be that it was damaged (probably by the hydrocephalus). He suspects it's probably both. It's not degenerative, so it won't get worse. As her development continues her brain will compensate for the damage, though we don't know how much.

He also evaluated her for glasses. He said she was definitely very nearsighted, and said her vision was 4 (we're assuming that's diopters). I found a website that says that's equivalent to 20/400 vision which is quite severe for her age and it will likely get worse as she gets older. It may even get bad enough that they can't correct it to normal vision. However he said he doesn't want to put her in glasses yet, that we'll wait another couple of visits before he does that. I'm not sure why, unless he just wants to re-evaluate her after she's fully recovered from the surgery or something. After all glasses would go so nicely with her hearing aids, AFOs, and shunt. She'll be more machine than human soon :)

AFO + EEG

2006-10-02T15:33:00.000-07:00

Friday Maria got her ankle-foot orthothics (AFOs), and I hate to say this, but they're awfully cute. Blue plastic with butterflies, and pink straps. We got her some pink sandals and cute socks and she looks stylin'. I think she likes them, she's been playing with them and it seems like they might help her be more aware of where her feet/legs are. They want us to keep them on when she's in her stander, no problem, and work up to keeping them on all night--that will be interesting.

Today we started our day at the eye doc for our pre-operation appointment (actually we started much earlier with a walk. I put Maria to bed late and got her up early so she'd be nice and tired for her EEG). He's going to look at her optic nerve and her prescription to see if she needs glasses while she's under. He gave us a nice note to take on vacation that says, "Maria's bruised eyes are from eye surgery. Her family takes fantastic care of her!" Ha! Take that! I will say if anyone looks at us askance because of her post-op black eyes.

And then we scampered on to the EEG, where Maria performed admirably--she fell asleep about a minute after she was wired up and the lights went down. The neurologist left a message that said Maria's EEG is abnormal and she wants more detail on the "episode" Maria had a couple weeks ago, prompting the EEG. Andy reminded me that her past EEGs were also abnormal. (I remember them saying there was potential for seizures, but abnormal, hmph!)

Her last easy day for a while

2006-09-28T13:58:00.000-07:00

Maria was in quite a playful mood this morning. She managed to snatch the glasses off my head and bite down on them before I could react. The lens popped out and got scratched by her teeth, but I got the lens back in it looks like no serious harm done. She's lucky she's cute :) She also kept pulling the cat's tail (hard!) and the cat got annoyed but wouldn't move away. Cathy's cats are pretty mellow though so we're not (too) worried that they'll retaliate when she gets "friendly" like that.

Recently Maria has started struggling to get to things that are out of her reach. That's an important developmental milestone because it gives her incentive to crawl or walk. It also shows how much better her vision is getting. When we're outside I've seen her reach out toward the trees on the other side of the yard.

The music therapy seems to be helping. She continues to respond very strongly to the guitar, looking around for it and rolling over to be near it. She is also getting good at strumming it and today she beat a drum several times. Her motions are getting more deliberate and less "randomly flail about until I touch something". She's also looser and we are better able to move her limbs, for example to clap her hands during music.

She has a big week coming up. Tomorrow she gets her ankle braces, Monday she has her pre-op visit and an EEG (not related to the surgery just an inconvenient coincidence), Tuesday she sees the wacky voodoo doctor (the Qi Gong guy), Wednesday her chalazion surgery, and Thursday the wacky voodoo doctor again. Some of her therapies will be cancelled but others won't, so she's got a pretty full dance card.

Startling Reaction

2006-09-24T23:05:00.000-07:00

In the category of good news/bad news, we've been noticing Maria reacting to things that startle her. The good news is that she reacts to things that startle her more. The bad news is that she reacts to things that startle her more. The latest was last night when I moved the mosquito net above her crib (the mobile keeps getting caught on the net), and accidentally knocked a very light wood picture of St Francis onto the pillow right next to her. It might have touched her, but nothing painful--as I said it's very light. She jumped, then got this horrible look on her face, opened her mouth, and looked like she was going to start crying or let out a wail or something, but then she regained her composure (do 2-year olds do that?) and was ok. Andy saw what I imagine was the same face the other day, and I've heard Sue mention it as well.

Along similar lines, she's been very ticklish lately, and again opens her mouth and you just know that any second now she's going to laugh, but not yet... I'm sure some day it will come.

She's been opening her mouth very wide the past few days, mostly while eating, I think. In general, she's starting to open her mouth for the spoon so fortunately we don't have to shove it in her mouth anymore (not as wicked as it sounds), so that's pretty exciting; but in addition to that, sometimes she just opens it like she's trying to figure out if she can fit an egg in her mouth (like my siblings did one day, long ago).

The other exciting thing Maria's been doing is hugging tight. Although often accompanied by pulling hair, I still think it's great.

Oh yea, and in the 2 days or so that we've stopped using the TobraDex (antibiotic ointment), her right eye has started to get crusty--maybe some sort of infection? So, I'm back to using the goop again. She was acting like it was bothering her before we stopped using it; almost like it was stinging. Hope it clears up before her surgery Oct 4. Her lower left eyelid is starting to get bad again and her right eyelids are so swollen they look like they're going to pop.

We visited Manoli's Greek friends at the restaurant today. They haven't seen Maria in months, maybe almost a year?? I don't think they quite know what to do, say, or make of her. She really took to Nick. Kept looking at him when he was talking (unusual) and was holding on to him when he held her (he doesn't seem too put off by her).

See What Can Happen?

2006-09-19T06:32:00.000-07:00

Almost daily we talk about letting Maria do things on her own. "Leave her alone," we say, even while messing with her. Sometimes we let her feed herself, we encourage her to hold her own bottle, but generally her mom or dad or uncle or nanny do most everything for her... So imagine my surprise.... At about 1am, and again at 3am, 3:15, 3:30, Maria was coughing. Finally I got up, made her some juice to wet her whistle, gave her a few glugs, then put the bottle in her crib so I could grab it when she started coughing again. So, as I said, imagine my surprise, when at about 4:30 or 5am I heard her gulping, gulping, gulping!! She rolled over, grabbed her bottle, and started drinking! So amazing and exciting! And isn't that one of the great things about parenting a special kid--we celebrate and appreciate all her successes, whether big or tiny.

The other amazing thing Maria did was stand for Uncle Andy yesterday-a lot. He was holding her at the hips or waist and first she stood for about 5 minutes, then a little bit later she stood for 10-15 minutes! (He said her legs were so stiff, he thought she should use the stiffness for standing.)

And the mosquitoes are still loving her. First it was her feet, yesterday it was her legs. Huge welts that look like hives. I gave her a few doses of benedryl and it seemed to help. Fortunately they don't seem to itch, but they look awful.

Attack of the bloodsuckers

2006-09-14T16:15:00.000-07:00

Maria's surgery has been scheduled for October 4, right before she goes on a cruise. Since the surgery will leave her with black eyes for several days, Cathy can enjoy the looks of her fellow cruisemates as they wonder if she beats her baby. She also has a pre-op visit with the doctor a couple of days before. Then just after the cruise Maria has her barium swallow.

Maria's still feeling a little sick. Yet another recent problem is that she is being ravaged by mosquitos. She must have 6-8 bites on her left foot alone (she's asleep right now so I can't count to be sure). Manolis is worried about West Nile virus. They have put mosquito netting around her crib in hopes of keeping the bloodsuckers away.

Yet another, another recent problem is that Maria had an incident yesterday. While the PT was here Maria got suddenly pale (so pale she was yellow), clammy and stiff. A friend of the nanny, who is an RN, said that it sounded like a seizure. For a typical child it might get waved off, but since hydrocephalics are more prone to seizures, we have to take this one seriously. So Cathy has a call in to the neurologist to schedule an EEG.

Maria also has her IFSP (her treatment plan) meeting this month with the representative from the state. And it's time to call about new hearing aid molds. And let's not forget her orthotics appointment the 29th. She is a busy, busy girl.

Doctors, doctors everywhere

2006-09-11T16:02:00.000-07:00

Maria had her trip to the eye doctor this morning. Her chalazion isn't improving much so he's decided it's time to lance the swellings. Since they have to put her to sleep it has to be scheduled as an outpatient procedure so it may be another 4-6 weeks before they do that. In the meantime we continue the compresses when Maria feels like allowing it in hopes she will have some kind of spontaneous remission so we can avoid surgery.

Then she saw the orthotics specialist for her AFOs (ankle braces). She got molds made of her feet, which was kind of interesting. They use this fiberglass-impregnated cloth that looks like an Ace bandage. When the cloth is moistened it starts to harden and is completely set in a few minutes. That gives them time to wrap it around her leg from knee to toe so it hardens in a perfect mold of her legs. Then they just cut it off with scissors. We forgot to bring the camera, but she had someone else in the office take a few pictures that she is going to email us. We go back the 29th for Maria to try on her new accoutrements and do some final fitting. She'll wear them only at night and when she's in the stander.

She also talked to us about, as Cathy put it, "another damn contraption". This is something that fits across her hips and thighs and helps her to sit on the floor more easily. Right now she can (sometimes) sit on the floor unassisted, but only very hunched over and with the support of both arms. This could help her feel more comfortable straightening up and maybe even sitting without needing her hands for support. They have some we could try to see if it helps her. It was a little too much to look at them this time, but maybe next time or even at the post-AFO follow up visit.

The vision therapist had us try something interesting. Maria was sitting in her new chair (a very nice pink, fuzzy easy chair complete with ottoman) and the therapist put light weights on her thighs. It gave her some stability so that she could focus on her upper body. She became much more active with her arms in this more stable position.

I tried something new in her stander. The straps go across her knees, waist, and shoulders. I tried unhooking the shoulder straps to give her a little freedom. She loved moving around and experimenting with her position. She flopped forward only once and was able to lift herself back up. We will probably start doing that more routinely to give her more freedom to move in the stander.

Sick but improving

2006-09-08T11:52:00.000-07:00

Maria's still got that persistent, phlegmy cough. She's gotten both her dad and her Uncle Andy sick so far.

She continues to fight the warm compresses. We are glad she's asserting her independence more, but she really needs this treatment for her eyes. Monday she goes back to the eye doctor and I'm fairly certain that he's going to recommend lancing the swellings. Yuck. She has her orthotics appointment for her ankle braces the same day.

Her sitting is improving. We took her to a restaurant recently and she again did pretty well in a booster seat. She flops around a lot, but we finally realized that she's just experimenting with body position.

She looks around for sounds more often than she used to, even without her hearing aids. She has some jingle bells that we wrap around her wrist that she likes to shake (and bite, but that goes without saying). She may be learning to understand a few words. When feeding her, she likes to suck her thumb, but if you say "Bite" she will take her thumb out to take a bite. She loves to pull people's hair, but she's starting to learn to let go when you say "Let go".

There are a lot of other small improvements that escape me at the moment. She seems to be in one of the developmental jumps she gets now and then.

Eyes and Ears and Lungs, Oh My

2006-08-31T22:48:00.000-07:00

I took Maria back to the eye doc today. If her eyes aren't a lot better by Sept 11, then he's going to recommend surgery (lancing the "zits"). Nice, huh? Fortunately, I caught her napping today and put lots of compresses (soaked in chamomile, as requested by her dad and ok'd by the doc) on both eyes for more than 30 minutes. (Couldn't tell any difference at all afterwards, kind of discouraging).

On a brighter note, we got the audiologist's report today, which says "Waves I-III were consistently present and repeatable. Wave V was present for only sporadic stimuli and was small in amplitude. For "click", Wave III was measured down to 30 dB bilaterally. Other results ranged from 4000 Hz, Wave III: 60 dB in left ear and 70 dB in right ear to 500 Hz, Wave V: 40 dB in left ear and 50 dB in right ear. For unmasked bone conduction: no synchronous neural response was recorded at the ouput limits of the equipment (35 dB). In summary, ABR results showed continued slight improvement in synchrony of the auditory pathway for both ears when compared to Maria's March 2006 ABR."

In comparison, Maria's 1st ABR in January 2005 (where they concluded that she was basically deaf) said: "No repeatable Wave V at 90 dB in either ear at 500 Hz to 4000 Hz, same for "click". March 2006 results: 500 Hz, Wave V: 60 dB right ear and 75 dB left ear. Granted, I don't know crap about this stuff, but she was at 60/75 and now she's at 40/50 decibels -- that sounds pretty freakin' good to me.

Interpretation: I think "improved synchrony" means that there appears to be a repeatable pattern of Maria responding to sounds, and it's at softer levels. It also appears that she hears better out of her right ear, but of course being the mom, I don't notice which is better. I still don't get the Hz stuff. And I have no idea what the unmasked bone conduction results mean.

Maria's cough doesn't seem to be getting better. It appears that she gave the cold to her dad, but hasn't managed to infect the rest of us, yet. And so on it goes ... it's not just one thing, it's the other and the other and and and........ Today I managed to do the warm compresses once (not the desired 4 times), eye ointment once (but will give her 2nd dose when I go to bed), the stander, and 3 meals (breakfast at 11:30am); plus she got one or two naps and I got a little bit of work done; but she only drank 21 oz fluids, no hearing aids, no Baby Einstein, no music, no crawler or resonance board or self-feeding or Nasonex or sign language or open cup or bath or anything else resembling therapy... Granted, I got about 3 hrs sleep last night and took her to the doc today and was supposed to be working, but sometimes I wonder if some of the therapists and docs realize that. Thank goodness for Sue and Uncle Andy and their success in doing so much more than ma and pa.

Speaking of pa, he's still "acting" in Kingdom. This time he was in some scene with Hummers and SUVs. Tomorrow they're going to be doing some night shooting. Can't wait to see the movie!

Another little bug

2006-08-28T17:53:00.000-07:00

Maria's recovering from what was apparently some 24-hour bug. She had a fever and was throwing up a LOT. She's better now, just very sleepy and still not eating very well.

While she was napping today I was watching a video on the computer and suddenly someone yelled. Maria jerked awake, which was the only time I've ever seen her wake to a noise. It's very encouraging how much her hearing is improving.

Timing is Everything

2006-08-27T18:57:00.000-07:00

And so of course right when I'm going to be out of town for a few days, Maria doesn't seem to be feeling very good--she threw up all night (it seemed) Friday night and slept all day Saturday and today is coughing. China Cat doesn't seem to be doing so well either--she threw up all day yesterday when I was gone to a play, leaving Manolis to clean it all up. It's making it much more difficult to think about getting on that plane...

So ya wanna hear something funny? You know that "some actor" Andy mentioned that Manolis got to "act" with? It was Jamie Foxx. Some actor, indeed. He gets to work on the movie again this week--maybe he'll get to have a fight with Colin Farrell...

AFOs and movie stars

2006-08-24T12:55:00.000-07:00

The PT has decided that it is time to put Maria in AFOs (ankle braces). She will wear them only at night to correct her foot position to prevent larger problems once she starts to walk. We had hoped to avoid them but since she's not close to walking yet, it's time. She doesn't even show the interest in standing that she used to. Then again, she seems to be trying to pull herself up on furniture and people's clothes, so it's hard to say.

She had her latest BAER a couple of days ago and it shows more improvement in her hearing. There isn't as much improvement as the last one, but any progress is good news. I'll give more detail once we get the full report.

Maria's eyes have improved a tiny bit but not much. Cathy moved up the appointment with the eye doctor to next Thursday. Cathy noticed Maria's gums are very swollen (presumably from her two-year molars) so that is another part of why she's been fairly cranky lately.

In other news, Manolis (Maria's dad) is going to be a superstar. He got a job as an extra on a movie being filmed in Mesa. He plays a soldier and was in a scene where one of the actors handed him something and he saluted back, so it's practically a starring role ;)

More pictures

2006-08-17T15:46:00.000-07:00

Well I FINALLY got the new pictures up on the site. I would particularly like to draw your attention to this picture and the story posted below it. I may be a dangerously incompetent caregiver, but at least I admit it. And provide photographic evidence.

A little update

2006-08-17T14:38:00.000-07:00

Maria's eyes are a little better...maybe. She just HATES the warm compresses, which is supposed to be the primary way to treat this. Sometimes she'll calm down after a while and then she actually seems to enjoy it, practically falling asleep. Sometimes not.

Maria loves to touch peoples faces. In the past I've tried touching her face the same place she touches mine, but she's never seemed to make the connection. Monday I was doing it and it seemed to click with her. She got that "Hey, this is interesting" look on her face and kept moving her hand to different places on my face (usually she just jams her fingers in my mouth - or my eye - and leaves them there). The speech therapist was doing something similar but he was also naming the parts and she was just mesmerized by it.

I don't think we've mentioned that she's gotten good at picking up food (little cracker-type things) and getting them into her mouth. OK, only about one in four end up in her mouth, but that's a start!

You say chalazion, I say blepharitis

2006-08-14T11:01:00.002-07:00

Hmmm, doesn't have the same ring as tomato/tomato...The eye doc gave us a piece of paper that has blepharitis (inflammation of the eyelid margins) and chalazion (a lump that fomrs in the eyelid as a result of blockage of an oil-producing gland in the upper or lower eyelid) on it. Guess it doesn't matter which it is, as long as it goes away. We've been applying the warm compresses (which she pretty much hates now) twice a day and putting in the TobraDex eye ointment (which she's not too crazy about and I suck at because her long eyelashes keep getting in the way of the ointment getting into her eye) 3 times a day. It's been 4 days since we've been to the eye doc and I'm not really seeing much improvement. She still has big, disgusting bumps inside her lower lids and who knows what inside her right upper eye lid, which is still swollen and red. Some days it seems like it just never ends, ya know? It's such a good thing that she's so good natured about life...

But the big news is that we had our appointment with immigration this morning and they approved Manolis for his permanent residence status, so he'll be getting his green card in the mail in 3 weeks! It was an easy interview. We took Maria with us. He told us some people are easier to interview than others. I think it was pretty obvious to him that we have a real marriage. He said they still catch many people trying to fake a marriage to get into this country -- which results in big fines and/or jail time. So Manolis is ok to work, travel, and live here now. The only thing we have to do is to file one final set of papers in May 2008 -- how am I ever going to remember that??!!

Another eye diagnosis

2006-08-10T14:12:00.000-07:00

Maria went to the pediatrician again on Saturday (the fourth time since we got back) because her eyes looked the worst they had yet. He said just keep doing what we are doing.

She finally got in to the eye doctor today and he had a new diagnosis. He said it is something called chalazion which is basically acne of the eyelids. It's a chronic condition (or, as Cathy said, "yet another chronic condition") that will come and go her whole life. We are supposed to scrub her eyelids with baby shampoo every day, even after it goes away. He took her off the eyedrops and instead there is an ointment we are supposed to use in addition to warm compresses. We go back in a month and if it hasn't cleared up by then he will have to *gulp* lance the lumps, which means putting her to sleep.

This is a new eye doctor for Maria. He's going to be starting a study of children with both CVI and auditory neuropathy and Cathy wanted to get Maria in. One piece of good news is that he said CVI kids often have major vision improvements up to the age of five (I think we've heard three before) and lesser improvements well into their teens. We also talked about Maria's optic nerve atrophy. He said it is very unlikely to resolve itself though it has been known to happen. He didn't look at her optic nerves since that would have meant dilating her eyes which he didn't want to do with her current condition.

I suppose this is a good week for this to be happening because Maria's getting a vacation. All of her therapists are on vacation except the PT, and she did her quarterly report this visit. So Maria can take it easy this week and rest up.

Two year checkup

2006-08-03T12:21:00.000-07:00

Maria had her 2-year well check this morning. Her eyes are still looking bad (swollen and goopy). Today she saw her regular pediatrician who said it's not an infection it's allergies. *BUT* we should still treat it as though it's an infection as well. So she's getting eyedrops for an infection, eyedrops for allergies, Claritin, and occasional Tylenol since her eyes are clearly very painful. She's normally such a drug-free child it's a little strange to be dumping this many chemicals into her.

This eye problem has persisted long enough that it is time to get her to an eye doctor. By coincidence she has an appointment next Thursday with a new ophthalmologist who is doing a study on kids with both cortical vision impairment and auditory neuropathy, so we can ask him about this allergy/infection/whatever.

The pediatrician is concerned that Maria hasn't shown any increase in weight or length in months. She said we need to try feeding her more. We are a little skeptical because she seems quite happy with the portions she's been getting, but we also realize it's the same amount she's been getting since she started on solid foods. So we'll try and see what happens.

We asked about the possibility of her adenoids being swollen. She has seemed to have trouble breathing through her nose for months now. There is no way to look at her adenoids (short of radiology) but the doctor said her tonsils are fine and it's very rare for adenoids to be swollen if tonsils are fine. She also said that her breathing would be much louder if she was having adenoid trouble. She says this kind of thing is common in low-tone kids. Everything sags and the nasal passages get constricted. As she starts to move around more it should go away.

Cathy asked yet again about that chronic skin "thing" Maria has. She has all these little bumps on her arms and legs that get better and worse from day to day. She's asked about it before and no one's been concerned, but it's still a little troubling. The pediatrician said it was...something that I can't remember the name of. The hair follicles get blocked or inflamed or something. It's not a disease, just an irritation, and a lot of people have it. It's worse in Maria because she's such a furry little monkey.

I should have a new batch of pictures up over the weekend.

The Eyes Have It

2006-08-01T23:09:00.000-07:00

Maria's eyes were so bad Monday that the therapist from the Foundation for Blind Children "made" me call the doctor's office again. We got in to see yet another pediatrician who said, yes, it does look like an eye infection, and gave us some Vigamox, antibiotic eyedrops. Her right eye is now worse again, but the drops do seem to be helping a little. Poor little thing. I think her eyes are bothering her now because she's rubbing them more, winces sometimes when we try to get the goop off, and doesn't think the warm washcloth is quite as cute as it was 10 days ago or so. I also think the eyedrops sting a bit, so I put her in that awful position (laying on her back with her head in my crotch and her arms under my legs) to put the drops in. She smiles, but I think it might be more of a grimmace... Such a good sport, though.

Manoli got to take care of Maria alone today because the nanny's blood sugar was through the roof. I think Maria had a good time -- he read her lots of books, put a little chocolate syrup in her cereal and bananas, didn't make her change out of her jammies all day, did make her wear her hearing aids, put her in the stander, and kept her fed and liquidated. All good practice for when I go to Portland for a few days at the end of the month... He was looking forward to having her by himself for another day, but Sue's feeling better, so she'll be back tomorrow.

Snack tip: the Oreo crisps in the 100-calorie packs are great for little kids. They're chocolate, so they taste good, and they melt very easily. They're better than the 100-calorie chips ahoy, cheese nips, or nutter butters, which are all too hard. Always looking for those perfect snack foods, ya know?

NM Trip

2006-07-28T22:05:00.000-07:00

Uncle Andy, Maria, and I went to Las Cruces then Albuquerque last week. Hard to believe we've been back for 5 days already. I had a class and Andy came along to babysit (Manolis was at home painting and working hard). We took her swimming in the dirty hotel pool and now her eyes are red and swollen and a little goopy. We think it looks like an infection and/or sty(s), but I took her to the back-up pediatrician who is convinced that it's allergies. So he gave us an Rx for Nasonex, steroid nose spray. I've given it to her 4 times now (1/day) and maybe it's better. It was in her right eye, now it's worse in her left eye. Tried to get her into the eye doc and the earliest appt is10 days away, double booked appt, in Gilbert, which is way the hell down south. Her 2 year check up is this coming Thursday, so I guess we'll see what her pediatrician says. I've asked each of the therapists, plus anyone else who will listen, what they think. Consensus is yeah could be allergies, also looks like at least one sty, probably not pink eye, who knows. Looks so awful, but she doesn't rub them unless she's really tired.

Auntie Rosanne's parents-in-law happened to be in Albq when we were there, so they got to meet Maria finally. When Grandma Jenny held her, Maria was constantly touching her face. When Grandpa Tom held her, she just melted into his arms. It was so sweet! I'm glad they finally met her. Maria also seems fascinated by Aunt Rose. She (Maria) just stares at her with a look of admiration and awe.

Andy tried Maria in a high chair at a restaurant in NM. (I've been too chicken to try it.) She does better when she's not tired and with blankets stuffed in for support, but she does pretty well! The Cracker Barrel in Flagstaff had an awesome high chair - it's an old fashioned kind with a high, slightly curved back. She did really good in that one. I got a picture of her holding her bottle by herself, sitting up in the high chair. She looked like such a big, big girl!!

The other thing Maria's really been doing well at is eating big people food. She ate lots of guacamole in NM, and some of a spicy meat and bean burrito -- her eyes were red and watering, but she kept grabbing my hand with the spoon in it and shoving it in her mouth. Very cute! (By the way, I just have to say that Maria doesn't eat "pureed muck" as my brother so delicately put it. It's pureed organic fruits and veggies, wild fish, and grain-fed, open range meat and poultry. Pureed muck, indeed.) Maria's quite fond of chocolate, thanks to my genes and her dad giving her chocolate frequently. On the weekends we like to go to Barnes and Noble, sit in the Starbucks, and share a chocolate cheesecake or chocolate cupcake with her. It is so cute when she sees the chocolate and gets so excited that her whole body wiggles. I'm going to try to get it on video, but she's camera-shy these days.

The video Andy put together for Maria is so cute, I hope you've had a chance to see it. She's going to love it when she's older. My how she's changed in 2 years!!!

I asked the occupational therapist to work with us to help Maria pick up small bits of food and feed herself. Since we're going on vacation in October, I'd like her to get better at sitting up in a high chair, eating little pieces of food from her own hand, and holding her bottle by herself. She's getting better at all of those - esp the bottle. Andy said the bottle was next to her yesterday and she grabbed the nipple to pull it toward her, then held on to the bottle with both hands and put it in her mouth. You know, one of the great things about having a special needs kid is we get so excited about the tiniest accomplishment. If only all people were like that about all other people, instead of being so critical all the time.

Maria's a rock-and-roll star

2006-07-16T11:02:00.000-07:00

I put together a music video for Maria's birthday which you can see over on her webpage. It's quite a bit larger than the other little video clips (5-10x the size) but I'm sure you'll think it's worth the download. I hope to have her newest set of pictures up soon, maybe even later today.

Hearing aids are not child-safe

2006-07-11T11:40:00.000-07:00

Maria has a new trick. Not only can she pull out her hearing aids, she can take them apart. And the pieces are just the perfect size for a kid to choke on. Yet another reason we can't let her out of our sight.

It looks like she's going to be getting even more therapy in the future. The PT wants to start coming twice a week and is trying to find time in her schedule. One of the past speech therapists has been asking Cathy if Maria needs feeding therapy (in addition to her normal language-centered speech therapy). Cathy finally realized that she really does. She's still getting thickened liquids, still drinking from a bottle rather than a sippy cup, and only recently started on chunkier foods. That will probably be only 1-2 times a month.

Maria seems to be figuring out the chewing thing. I watched her with pieces of cookie yesterday and saw her use her tongue to move pieces between her molars to crunch them. She still has trouble from time to time with chunks, but she's doing really well.

She has gotten more interactive with her environment. She looks for things and people sometimes. She gets better and better with rolling the ball. She might be starting to make some signs. She can make choices between objects. The other day while watching a Baby Einstein video, there was a cardboard sun moving back and forth and Maria waved at it (maybe). She's so inconsistent with things it's often hard to tell if she really does something or if it's coincidence. But, as we keep saying, she's making progress.

Big girl food

2006-07-06T14:17:00.000-07:00

The thing about a kid like Maria (now that she's two, I guess I can't keep saying "a BABY like Maria") is that we get so focussed on her deficits that things fall by the wayside. For example, it occured to us recently that she's two years old and still eating pureed muck. So Cathy has started feeding her chunkier stuff like pasta and diced fruit. Maria just loves it. It's hard to tell if she actually chews it, but she enjoys it. She's been eating more lately, which may be the new food or it may be another growth spurt.

Her movements have been very good lately. She can get up on her hands and knees by herself. Her floor sitting is still erratic, but she can do it if she wants to. She seems to be moving more deliberately rather than just flailing around. The OT came by today and she helped Maria roll a ball back and forth to Cathy. A couple of times Maria managed to push the ball away with no help! She seems to understand the concept of movement better than before, even though she's still a little shaky on the practice.

I have several times heard what Cathy thinks is a laugh and I think she's right. It's not a ha-ha laugh just a wordless "huuuuuh", but her mood clearly progresses from small smile to big smile to "laugh" every time. The most common time she does it is when she is anticipating something like being tickled or touched with something cold. We'll have to try getting it on video one of these days.

Birthday Party!

2006-06-26T22:13:00.000-07:00

Saturday we had a little birthday party for the big 2-year old. Auntie Kim and her boys gave Maria a tutu, wand, tiara, and clip-on jewel earrings, oh yea and a little dog purse. So cute! One day soon we'll try and get her in the tutu, tiara, and earrings and take a picture -- that should be easy... I put some stick-on earrings on Maria and fooled her Auntie Kim and Phoenix grandparents who thought I'd gotten her ears pierced. Definitely made the party worth it!

I was comparing this year's birthday photos with last year's and Maria appears to be smiling more in this year's photos. I let her have her own cupcake so she could smear it all over her face since she didn't/couldn't do it last year. Andy took a 7-min video of it that he'll cut down to 30 sec or so. I'm not sure if she had a good time, seemed like it.

Maria's progressing slowly, but daily. She's been doing pretty well with sitting and weight-bearing on her legs. Today I even got her to laugh several times for the first time ever (if you didn't know her, you wouldn't know she was laughing, but I could tell...). All I did was bend down to kiss her or say hi or something. So cute! She's also getting quite aggressive with the hugging and French kissing. The boys are just going to love her, eh?

Happy 2nd Birthday!!

2006-06-24T00:03:00.000-07:00

Today is Maria's birthday (well for 1 more minute according to my computer clock). Maria has been awake for about 18 hours of it, maybe more. She didn't get to sleep until about 2:30am last night/this morning. She took 1 or 2 hour-long naps, and now it's midnight and she's not asleep yet. I do not know what in the heck is going on with her sleep clock, but she doesn't like to go to sleep at night. I told Manoli we should move her crib into her room and try having her sleeping alone w/no distractions, but his response was "you want to get rid of Maria (from the bedroom), but you won't get rid of the cats". So I guess he's not ready yet...

Sue, the nanny, got Maria a wonderful big caterpillar balloon and a Furby. Remember those? So I read the instructions and learned how to feed it, make it dance, tell a story, sleep. Maria seems to like it. They say it can learn English, but I think it's only the pre-programmed words. I was hoping to make it say "Maria", but can't figure out how.

To show you what a mean, horrible mom I am, this is what I fed the birthday girl for dinner: green bean/carrot/potato mixture (same thing she had for lunch), pasta shells, couple bites of a vienna sausage (one bite of which she fed herself!), and banana pudding. What the heck kind of birthday dinner is that? (Scarred for life...)

But to make it up to her, tomorrow we're having a little party for her. Inviting a few of my friends over. Don't think there will be any little kids here; maybe her buddy Dakin. Just a 6-yr old, a 10-yr old, and adults. Manolis will cook souvlaki (pork and chicken marinated on skewers - very yummy!) and make Greek salad. I made cupcakes. Plus we'll have cheese & crackers, shrimp cocktails, M&Ms, ice cream, beer, wine, juice - not very kid-like... We're going to give Maria her own cupcake and see what she does with it. Well, I guess I'll give Maria a bottle (of milk) and see if that'll knock her out. I've already tried lavendar salve, Calms for Kids homeopathy pills, and cereal w/fruit - all my usual tricks, which aren't working. She'll probably sleep through the entire party tomorrow. 2 years old, can you believe it? She's been w/o the feeding tube for a whole year now!!! She's made so much progress in the last year. If only we could get her to sleep.

She takes her first step...

2006-06-23T11:47:00.000-07:00

...well sort of.

Yesterday I was helping her stand, holding her lightly around the waist to help her balance. All of a sudden she very deliberately took a step forward with her right foot, shifted her weight onto her right foot and brought the left foot forward. From the way she moved her body I'm pretty sure it was deliberate. Of course I couldn't get her to do it again (she just loves teasing us like that).

She had a very good day developmentally yesterday. She did a lot of supported standing. She sat in her bumbo chair for a half hour, which is far longer than she has ever lasted. While sitting she bent over to pick up a toy at her feet then straightened back up. She did some rocking in a crawling position. I had to support her chest, but usually when I try and put her in the crawling position she just lunges forward until she's on her belly. She did some good floor sitting and rolling and was really active all day.

A near miss

2006-06-20T11:06:00.000-07:00

Maria nearly had another incident yesterday. I have developed the habit of leaving her lying on the couch while I do other things. I know, I know, all the advice says never to do those kinds of things. *slap* Bad uncle!

Then, as these stories always go, I turned my back for just a second. I turned back and she was halfway through a roll that was going to take her off the couch and face down on the tile floor. I leapt across the room with a speed and agility you wouldn't expect from someone of my age and weight class, and caught her just inches from the floor.

OK, Maria, this "fall down go boom" thing isn't funny anymore.

In other news, Cathy got Maria a wooden bench. I guess it's the hard surface, but when Maria sits on it she moves differently than I've ever seen her. She shifts her body back and forth with this strange little grin. She is very good at catching herself if she starts to slump to the side (unless her thumb is in her mouth, then she goes down with a big grin knowing Uncle Andy will catch her).

Cathy found a swimming pool in town that is just for special needs kids. She visited it once and there were only a few people there, which is nice because it's no fun when there are a zillion people in the water. We hope to take Maria there some time, but it's so hard to find the time in Maria's busy schedule. She does well in water, so we'll find the time some day.

Incidentally, I moved the pictures link on the left side from the bottom to the top. It's the one link that people use the most and it's silly to have to scroll all the way down to find it.

Happy Father's Day

2006-06-18T21:36:00.000-07:00

Today is Manolis' 1st Father's Day with Maria (last year he was still in Crete trying to get over here). Maria gave him 3 months of the beer of the month club, he was excited! We spent the day with some friends of his from Crete. When they met Maria, of course they fell in love, and the woman whose house we went to gave Maria a prayer bracelet, pin with a saint on it, picture of a saint, framed picture (icon) of Mary and baby Jesus, holy water, and holy oil. It was very sweet and rather cute. She just kept going back to the bedroom and getting more and more things for Maria. I told Manoli it's his job to take care of the holy water and oil.

Well it finally happened - Maria had her first fall. We put her on a reclined recliner. I wasn't watching, and the next thing I knew, I heard a clunk and there she was on the floor (tile floor of course). So I yelled "shit" in front of 4 old people and my hubby before running over and grabbing her. She seemed a little shocked, but not hurt. She didn't cry or utter so much as a peep. I don't know which bothered me more - that she fell on a tile floor or that she didn't cry... So I held her very tight for at least an hour before I would let anyone else come near her. I called the Blue Cross nurse when we got home, and we need to watch for vomiting, seizures, changes in vision or movement, pain -- pretty much the same types of things as for shunt failure... I couldn't feel any bumps, but I think I might see a little red spot in the top center of her forehead. And now we're playing our too familiar game of it's 10pm and Maria still isn't asleep and is fighting it for all she's worth. I'm not quite sure what to do about it.

And finally, I swear my mom is visiting us lately. The other day the water cooler shook 2 times and my cats weren't anywhere near it. It's been bubbling a lot more than usual (big air pockets bubble up into the jug), and today Manoli saw that one of the wooden plugs in the crock holder was out and on the floor. I think she's come to visit for Maria's birthday!

Stand in the place where you live

2006-06-17T10:26:00.000-07:00

Maria continues to improve with supported standing. It's going to be a while before she's doing it on her own, but she requires less and less help and can hold a standing position for quite some time. At this point I'm not sure she needs the stander anymore, becase I think she does better with one of us holding her up as it gives her more freedom to test her balance. But standing is like everything else -- if she's not in the mood then she won't do it.

Maria loves her magic spray and each time we spray it in her mouth, she gets this big grin. Cathy tried to get it on video and the INSTANT the camera was on, Maria started to act like the spray was just horrible and went into full drama queen mode. The little scamp.

She continues to be very thumb-centric, which interferes with her sitting. But she's also learning to correct her balance with just her trunk, so she's still making progress.

She loves her music therapy and is just mesmerized when the therapist plays the guitar. We did some music therapy with Maria on the resonance board (with the guitar pressed against the board) and she really liked it but tired after about ten minutes.

We keep meaning to work on cup drinking with her, but it just gets lost with all her other stuff. I remind myself that at this point frequency is more important that duration, and my goal is to use the cup at least once every time it's one of my Maria days. I think she likes the independence of it and needs the chance to learn the skills.

New pictures

2006-06-14T14:53:00.000-07:00

I posted some new pictures. As you can see, there is a new picture on the blog as well. She looks so sad, though! We'll have to take a better one someday.

Careful -- she bites

2006-06-13T09:10:00.000-07:00

Maria has been a biter for a while, but she's really gotten bad about it lately. She managed to draw blood from her Aunt Rosanne and she frequently bites her own arm or fingers. I think she's biting herself less hard than she used to since she's learned that it hurts when she does that. However, the rest of us aren't so lucky so we have to be careful around her.

When she's not biting, she sucking her thumb. She's become incredibly oral lately. That interferes with everything else she does. After the great sitting day I posted about last time, she's done very little sitting. She still does better than she used to and is learning to balance without use of her hands (with them being in her mouth and all), but she can't hold it for very long.

Her standing is coming along. She can take the weight, but she still doesn't have the balance. Yesterday she stood, supporting herself with her hands against the seat of a bench, with no one holding her up! OK, it was for only about a half second, but that's a half second more than she's ever done that kind of thing before.

She has had "tantrums" lately. I put that word in quotes because Maria's tantrums are so much less than another toddler's would be. They are just bouts of frustration. I think it's a combination of wanting to move but not knowing how to do things, and wanting to communicate but being unable to. We continue to try signs and talking and so on, but still can't tell if she gets any of it. She sometimes seems to imitate things but never consistantly. For example yesterday I was going "ma ma ma" with her and she started to open and close her mouth soundlessly, but I'm not completely sure she was imitating me.

She has her usual busy therapy schedule this week and her birthday is coming up soon. Terrible twos, here we come!

Sitting pretty

2006-06-05T16:03:00.000-07:00

Maria has been having a VERY good sitting day. Cathy said she did great with the vision therapist this morning. The PT just left and Maria was sitting like a pro. She must have gone two minutes or longer sitting with no help, not even a light touch to correct her balance. That's a huge improvement over what she's been doing. She's also getting good at doing sit-ups -- if she's in a reclined position she'll pull herself up to sitting. It's not the best way for a kid her age to sit up (she can't do it from a completely supine position) but she's definitely showing interest in sitting.

Her weird red bumps are fading; we still aren't sure what they were. Her allergies are a little better, which often happens here as the mercury pushes past 110 degrees. I know my allergies disappeared as of a couple of days ago.

Her Aunt Rosanne will be in town for a few days, so that will be fun for her.

Magic Spray?

2006-06-04T10:33:00.000-07:00

Yesterday we went to the chiropractor again; the one who does a form of Qigong. During our last visit, he said Maria might be ready for a "neural enhancer" spray, but he didn't have any open bottles. It's rather expensive so he wants us to try it first before we buy one. (We've been to him at least 10 times over a 6-8 month period, roughly and this is the first time he's ever mentioned buying anything, for those of you saying tsk tsk). Anyway, this visit I asked him about it and he said he'd been thinking about it ever since we were there last (a month ago). He still didn't have an open bottle so he gave us a new bottle to try. If we don't like it, we'll give it back, if we do, we'll pay for it. Seems fair.

All I have to do is spray it four times into her mouth once a day. It's supposed to help her build neural pathways in her brain. I looked at the company's website (Maxam Nutraceutics), and I couldn't find the NX-Rx spray (neural enhancer) that he gave us, all I could find was NG-Rx (neural regeneration), which says it increases neurological activity, balances brain chemistry, and increases cerebral circulation. There are a bunch of testimonials on what their sprays (esp. the one that removes toxic metals from your body) have done for autistic kids. Really does sound too good to be true, and you know what they say about that ... But I really trust this doc, I feel he's doing good things for Maria, and what the hell, why not try all kinds of non-harmful avenues. We'll see what happens!!!

Oh yea - and about those credit cards... Maria kept getting pre-approved credit card applications, and since it's never too early to build good credit, I applied for one for her. They asked for household income, which was no problem. For occupation, I put "baby". etc. We got a letter from Capital One the other day that said "... application submitted is incomplete or cannot be verified." Hmmmm, maybe I should have sent them a picture proving her occupation??? Wonder if they'll stop sending them now.

1st Dentist

2006-06-02T05:57:00.000-07:00

Yesterday Maria went to the dentist for the first time. He was nice, young, and cute -- best kind of dentist, right? He said her teeth look good and clean and we're doing a good job. That was good to hear because I thought her teeth were looking a little yellow. Sue brushes her teeth every day (of course), but I've been sloppy about it in the evenings because she's often asleep by the time I put her to bed. The dentist said it's very important to brush in the evenings because the milk sugars are damaging to those young teeth. He showed me a good way to do it, which I can do even if she's asleep -- I put her head on my lap with her feet facing out. That way I can use both hands to open her mouth, move her lips, and brush. Usually I do it with her sitting, so I'm holding her up with one hand and bushing with the other. This has only been semi-successful.

Next week my sis is taking off more time from work to come to boiling hot Phoenix (supposed to be about 112 this weekend - it really does feel hot above 110...). We're going to tackle our health insurance bs. I'm still trying to fight some bills from more than a year ago and after many phone calls and a few letters, I've let it drop because I only have so much time and energy. One thing I heard consistently from the moms at the Hydro Conference is to appeal, appeal, appeal. Write letters, be relentless, don't give up. Sample letters are available to help with the proper wording -- use the insurance companies' own language, for example. So we're thinking of spending a couple days at one of the local resorts, which are much cheaper in the summer to local residents, to relax, write letters, get organized, and take Maria swimming.

Speaking of swimming - the people who took care of Maria when I was gone gave me the cutest pictures of Maria on a floating mat in the pool, wearing a hat and sunglasses, just laying back, looking totally relaxed. That's my spa-girl! (doesn't even look like she misses me...)

New speech therapist

2006-05-31T14:30:00.000-07:00

No, there isn't yet another new speech therapist, but I did get a chance to meet the latest one today. I like him. He seems to know what he is doing and, as Cathy said, he's really keyed into Maria's subtle cues.

Maria's been making this lip-smacking sound, which I think started on his first session. She seems to be actually trying to communicate with it. I'm pretty sure it means "I want my bottle", "I want my pacifier", or possibly "Listen to this sound I can make". She also occasionally seems to do it after we do it, though not consistently enough for us to be sure whether or not it is coincedence.

Maria's been getting these red bumps on her arms and legs. She had a bunch of them on Thursday and has what seems to be a new crop of them today. My best guess is mosquito bites. I actually thought of chicken pox and so did the nanny, but she looked at them and they are not pox-like plus chicken pox starts on the trunk (she has none on her trunk).

She's gotten really good at supported standing. She still arches her body in strange ways; in particular, she still likes to crane her head back. But she holds her weight on her legs and just requires some input to correct her balance. She's much better at self-correcting her balance, especially while sitting. I keep having to force myself not to catch her too quickly so she'll have the chance to catch herself as she starts leaning over. She can sit unassisted on the floor for several seconds at a time, and does great in chairs. She used to flop out of her mini-papasan chair, but now she can stay sitting in it for a long time.

9th Nat'l Hydrocephalus Conference

2006-05-29T22:02:00.000-07:00

I just got home from Baltimore, MD. My sis & I went to the Hydrocephalus Conference. My first time away from Maria for so long -- she looked older when I saw her today! The conference was good. Very intense and emotional, but good. Gave me several new things to worry about (how will Maria get insurance when she's over 21, will she need shunt revisions or eye surgeries like many of the other kids, transitioning to school, transitioning from child to adult medical care), but I also met some very nice people and learned some good things.

The first session I went to was mothers of kids w/hydrocephalus. I was in the group with kids under 5. Each person told the story of their child, many of us were on the verge of tears, then Rosanne said she'd tell the story of Maria because it was probably too hard for me to talk about it, and I started crying, which got most of the other women crying. From that session I learned that moms of kids under 3 were still very raw, whereas moms of kids age 4 or 5 or older were much more stable and positive. Many of the stories gave us hope. It was a good move to have that session be first, because we saw each other and talked more as the conference went on.

- We learned a lot about the anatomy of the brain and what happens when you have hydrocephalus. They had a model of a brain that you could shove a shunt into to see how it felt, but I skipped that experience.
- Learned how to lobby the Congress to fund more hydrocephalus research. Very good, interesting session; then the speaker (Congressional staffer)'s son, who's 10 and has hydrocephalus, got up and sang What a Wonderful World, and there wasn't a dry eye in the house...
- Got a summary of the National Institute of Health's 1st conference on hydrocephalus last Sept, where they brought together a bunch of doctors to discuss research that has been done and needs to be done -- interesting, aggravating, and hopeful. Apparently, hydrocephalus is called a rare disease because it's not cured by drugs so the pharmaceutical companies don't do research on it, and shunts are effective so doctors haven't done much additional research or improvements.
- There is a web-based personal medical records site called followme.com; they customized it for people with hydrocephalus. It's called myhin.org (hin = hydrocephalus information network). You can store all medical data, records, scans, etc so they're available to all medical professionals who have access to the internet. Pretty awesome.
- I walked out of the shunt infections and malfunctions session, very informative, but way too graphic for me (multiple surgeries and tests, sticking needles in the brain to drain fluid, ahhhhhh)
- They discussed how to effectively get a 2nd opinion.
- Listened to a panel who all have hydrocephalus (49-year old man who's had it since he was six, didn't have a shunt revision in 40 years, but has had 20 or 30 or more? in the last 3 years; 24-yr old woman who's had it since birth, lots of issues but she's very successful now; a 73-yr old who was in a wheel chair, incontinent, had to be fed, they discovered she had hydrocephalus and now she's walking, talking, dancing -she was hilarious, her goal is to get Oprah to be the spokesperson for hydrocephalus because "she can probably get the word out"; and a 19-yr old boy who's had it since birth, has had some troubles, but seems to be doing very well now). It was pretty uplifting, yet freaky at the same time hearing how many issues they've had.
- Heard from a lawyer about what we should do to take care of ourselves and our children, especially special needs children - very informative.
- We went to 2 social events - a welcome dessert and the dinner/dance. We got to know some of the mothers of young kids better at these events. They're from Minnesota, Maine, and Louisiana. That was one of the best parts- talking with people that have similar issues, not having to be defensive or cautious, able to talk openly about hopes and fears. Of course I was constantly on the verge of tears (being the emotional one...)

I suppose I'll have to go all the conferences (every 2 years) from now on. Maybe I'll bring Maria next time. The hotel was very nice, super comfortable beds, nice view of the harbor, close to great shopping and restaurants, lots of live entertainment at the harbor in the evenings, and plenty of good places to walk around the harbor.

So, overall it was a good weekend. I would not have wanted to go to it alone, I'm glad I had Rosie's support. Maria and her local grandparents had a good time. Manolis had some time off from the girls. Andy was with his buddy from NM. Now it's back to the ol' routine: work and therapies.

Speech at Home!

2006-05-24T23:56:00.000-07:00

Today was Maria's first home-based speech therapy session. Home-based speech therapy is incredibly rare in Phoenix. I am so grateful that Maria charmed him into coming.... It went very well. The therapist is a big guy with a strong voice and Maria really takes to him. Only 23 months old and already she's boy-crazy (takes after her mom). He was making kiss sounds then gently squeezing her cheeks and it really seemed like she was trying to pucker and kiss back! He, like the new music therapist, seems to be in tune with her subtle cues, so he'd switch positions and activities as she got bored. I'm pretty excited about the new guy; he really seems to care and thinks he can make some progress with her. He looked at the list of goals I typed up from all the various sources, so he worked on some sitting and other aspects besides just speech.

Our homework this week (for speech) is to keep signing to her, keep trying to get her to imitate us, give her her chewy tube or nuk brush to chew on if she bites herself, and keep saying Maria's name to her.

My sis and I are off to Baltimore tomorrow to the Hydrocephalus Conference. It will be my first time away from Maria, (gulp) except that unfortunate 29-day hospital stay when she was born. She'll stay at her local grandparents' house. They have a pool, so she'll get lots of swimming in!

Time for botox injections?

2006-05-17T11:56:00.000-07:00

Now that Maria is at the ancient age of nearly 23 months, the doctors think it's time to start botox injections. More on that further down.

We just got back from the visit to the neurologist and neurosurgeon. They were absolutely ecstatic over her latest brain MRI. The thing about hydrocephalus is that an MRI shows that much of the brain is "missing" and replaced by fluid-filled ventricles. In some cases, the brain tissue is there, just squished into a smaller area by the fluid pressure. In other cases, the brain tissue is NOT there and that's part of the reason there is so much fluid (there is a lot of space to fill). With Maria, they were never sure which was the case.

This last MRI confirms that her brain looks normal and healthy, so the tissue was there it just needed to "fluff up" to fill the gaps. To my untrained eye, the MRI looked about the same as the one from a year ago, but they were much more excited over this one so there clearly has been some development since then.

She has normal reflexes and full range of motion in her limbs, though she was resistant to a lot of motions. However, resisitance is fine. With some neurological conditions, the limbs simply CAN'T move in certain directions even if forced. Although her limbs are stiff, they are able to move where they need to.

That is what leads to the botox. Although botox can be used to give self-indulgent celebrities that "made of wax" face that passes for youthful appearance in Hollywood, it also has actually useful applications. An injection of botox into her muscles could loosen them up for 3-6 months. It is a procedure used in kids with certain types of limb stiffness similar to Maria's. The neurosurgeon wasn't necessarily recommending it, but was saying we might ask the physical therapist what she thinks. I figure if she thought Maria needed it, she would have suggested it already. But I'm curious what her take on it will be.

Both neuros agreed that there is no need for ankle braces. Yes, her foot position is not great, but that's because she isn't walking (and because we don't put her in the stander as often as we should). Braces might still be in her future, but not now.

The lumbar MRI was also OK, so no spina bifida or cord tethering.

They think her developmental delays simply come from the fact that her brain couldn't develop while under pressure from the fluid, but my understanding is that the fluid pressure has been down for a long time. They were, of course, pessimistic about her future development (well, the neurologist was anyhow), but doctors often are and we'll just have to see if Maria once again proves them wrong.

The subtle pain response they think is just a sign of her cognitive delay. She feels pain, since she reacts to it, but she doesn't really understand pain so doesn't get as upset as a child with normal cognition might. They said the same thing about the no-crying thing. I can see that for the pain, but I still don't completely buy that for the crying. Newborn babies cry. They don't have to think about it or decide to do it. It's reflexive. The whole thing probably as important as I make it, but it just seems so odd.

Her weight is 25 lb, 8 oz which is less than it was a couple months ago, but just fine on the development charts (40th percentile). Her length is 31" (10th percentile) and her head circumference is 45 cm (5th percentile). So her physical development is fine.

Her shunt is also running fine.

All in all, some good and some bad. No real surprises, though. We won't see them again for another year.

Hearing her name?

2006-05-16T18:45:00.000-07:00

There is a new video on the Maria page that seems to show her responding to her name. At the beginning she seems oblivious to the music, but about a second after they sing her name she stops and gets a look of concentration. For the rest of the video, she seems to be listening to the music. Just one event like this I would put down to my personal bias, since her cues are so subtle. But we've seen at least a dozen events like this over the last month. Her name is the only word she seems to recognize, and seems to hear it best when it is sung.

Due to technical issues none of you care about, the video is vertically squished and is available only as a 3 MB WMV rather than a large MPEG and a small WMV.

Tomorrow is the neurologist and neurosurgeon. It is the first time we've seen them in nearly a year. Cathy and I were saying that it is probably time to start asking them things we may not want to hear the answers to. For example, Maria's delays are not typical of hydrocephalus (at least not this degree), so is something else going on? Plus her reaction to pain is awfully muted. And I keep going back to the whole doesn't cry/doesn't laugh thing. Are any of these significant? So tomorrow may be traumatic.

2nd Mother's Day

2006-05-14T22:26:00.000-07:00

Today is my 2nd Mother's Day and it was better than the 1st one, except for the unfortunate clam chowder incident... My sweet little Maria kept me up much of last night so I could enjoy her company for almost the entire 24 hours of Mother's Day. Maria & I sat outside this morning and I saw a beautiful white cockatiel! Tried to get a picture, but my digital doesn't have a good enough zoom and the batteries are dead in my other camera. Then I saw what could have been either a female cardinal or perhaps an oriole. I was juggling the phone and binocs while feeding Maria, so I couldn't get a good enough look. Very exciting bird morning! Manolis gave me a beautiful pair of gold whale's tail earrings for Mother's Day (I think Maria picked them out). Very nice!

Then Maria and I took a bath together with a bubble bath bar called Ruby Slippers because of the red glitter and a bath ballistic (fizzy) that has rose petals in it. Manolis went to church, Maria took a looooong nap, and I cleaned both bathrooms. I finally woke the princess up after 3 hrs or so and we went to the nearby Pier 1, Cost Plus, Barnes & Noble, and my favorite, WalMart. (Last time we went to Barnes & Noble, Maria decided to cough up a big juicy one, sending the guy in the comfy chair next to us away. Kinda funny, kinda not...)

Came home and made some clam chowder with the fresh clams I got from the Chinese Cultural Center market yesterday, while Maria spent some time in her stander and crawler (first time in a long time...). Tried the clam chowder and boy was it nasty. Don't necessarily think the clams were bad, but they were chewy, chowder tasted like nothing. So we dumped the rest of it down the disposal and ate leftover lentil soup. 1st time I can remember throwing away something I've made. Very disappointing! (see, Manolis should have taken me out to dinner.)

Last year, Maria had her feeding tube, this year she's been w/o it for 10 months! She got her hearing aids a week after Mother's day last year, still has them. Her 4th tooth was about ready to erupt last year, now her last 4 molars are coming in. Last year she was yelling, keeping me up at night, now she's still keeping me up, tho' not yelling as much. Sue, the nanny, started a couple days after Mother's Day last year, we still have her and still love her. Maria's seeing and hearing better than she was last year. Smiles more. Interacts with her environment more. Holds her bottle. Has more contraptions (stander, crawler, variety of chairs, etc etc). Rolls a lot more. So, all in all, last Mother's Day was pretty good, but this one was even better!

Music therapy

2006-05-14T09:58:00.000-07:00

Maria had her first music therapy last week. Her interest came and went during the session so it's hard to tell how much she got out of it, but I think it will be helpful in the long run.

She's been kind of introspective lately. She seems to be exploring movement more. I've seen her a few times lately with a look of concentration on her face as she slowly moves her arm or her head, as though she's really focussed on how it feels.

She continues to be SO CLOSE to sitting on her own. I find she does better with something in front of her like a table, and the vision therapist says that is common as it gives a visual point of reference to help her balance. The other day she was sitting and started to overbalance to one side, and she raised the opposite arm to as a counter-balance. I don't think I've ever seen her do something like that before.

This week is her postponed appointment with the neurologist and the neurosurgeon to talk about the MRIs she had before. Plus, of course, all her usual therapies.

Cuteness wins again

2006-05-11T11:30:00.000-07:00

Maria had an evaluation with another speech therapist yesterday. He told Cathy he'd look at her but there's a waiting list a mile long. As he's holding her and playing with her, he says, "Well, sometimes we make exceptions to the waiting list". He plays with her some more then, "You know, I actually have an opening, but I'm not the one who makes the final decision." And finally, "Oh, heck, let's start next week." Bwahaha, none can resist her charms.

We can only hope that Maria will use her power for good rather than evil.

Greek festival

2006-05-08T10:03:00.000-07:00

We went to a Greek festival this weekend. Food, music, folk dancing, the usual. Maria seemed to enjoy herself for the most part. Something very interesting happened when the band started playing a song with "Maria" in the chorus. She suddenly got really quiet and started listening. I have a video of her doing something similar to that personalized CD we got, but I foolishly filmed the video sideways and need to rotate it before I post it. I've seen her do that many times over the last week or two and I firmly believe she is deliberately responding to her name. I vaguely remember reading something a while back on auditory processing disorders that it is good to start sentences with her name as it will trigger her brain to pay attention. I guess it works that way on kids with normal hearing as well :)

Music hath charms

2006-05-04T13:56:00.000-07:00

Maria seems to be responding even more to music lately, though maybe we are just playing more of it. We got her one of those personalized CDs where they use her name in the songs and, though the songs are just awful, she seems to enjoy them. Not only does she get quiet when the music is playing, but she moves her feet and arms like she's dancing.

She sees a music therapist for the first time next Thursday. There's a larger therapy place Cathy is trying to get her into so this person might just be temporary, but I'm curious how this will go. I'm glad it's one of my Maria days so I can see how this person works with her. The advantage of this therapist is that she comes to the house; the larger agency means we'll have to take her there.

Maria MIGHT be finally starting to respond to her name. We hate to get our hopes up, but I've certainly noticed several times that she will calm if I say "Hi Maria". Then again, sometimes she doesn't. Manolis say he has seen her turn toward him if he says her name, and I think others have started to notice things. Her signals are so subtle and intermittent that it's always hard to tell if something is real or just coincidence, but (for me at least) I've seen it enough times that I think she's starting to make the connection.

She continues to be very stuffy and we are pretty sure it's allergies rather than a cold. We think that when her sinuses drain into her throat she chokes and that's what makes her cough so much. I haven't found that Triaminic makes much of a difference, but we try different things. She has been keeping Cathy up pretty much every night with her coughing since they got back from Oregon.

Wacky voodoo rituals

2006-04-28T10:52:00.000-07:00

I am (and will probably always be) skeptical of the whole Qi Gong thing, but there sure are some interesting things that happen there. Maria has always looked at him and reached her arms out toward him more than towards anyone I've ever seen her around, including her own family. When he was working on her yesterday she got very quiet, with this half grin on her face and this expression of "Hey, I don't know what's happening but it's pretty neat". This was when he was behind her and just moving his hands around without touching her so she had no way of even knowing he was there. Also, when he was working on her from the front, her eyes kept tracking his hands. Not well, mind you, but more than I've seen her track before.

Maria continues to be phlegmy. Although it gets worse when she eats or drinks, I don't think it's aspiration because it isn't that "I'm choking" cough. She has been coughing to the point she'll spit up her milk, but she doesn't ACT sick. I believe Cathy is going to try and get her to the pediatrician today.

Cathy and I talked last night about the fact that we've been focused on *language* with Maria (whether spoken or sign) and maybe we need to focus on *communication*. Since Maria's vision and hearing are still poor, we need to focus on tactile communication. This might be as simple as doing signs on her rather than in front of her vision, such as making the "eat" sign on her mouth rather than ours. Or it might be a matter of coming up with our own cues. One of the therapists mentioned that each person in Maria's life should use an object that she can touch that becomes that person's "name" to her. So that's something else for us think about and work on. It's so hard to know what to prioritize.

Oregon in Spring

2006-04-25T23:59:00.001-07:00

As Uncle Andy said, Maria and I went to Oregon for the 9th annual girls' weekend. The Oregon coast is such a beautiful, magical place... I don't know if it was the ocean breeze, the sand, the Reiki, the girls, or what, but Maria seems better since we've been back -- happier, more aware of stuff, taller -- better. I feel better too, more relaxed. She hardly needed her hearing aids because the women and the music filled the air w/o need of aid. We hit our favorite places : Crystal Wizard, Coldwater Creek outlet, Breach the Moon, breakfast at the Whale's Tail, and of course a quick stop at La Luna Loca in Canon Beach. The weather was windy-cold, but sunny and nice. Maria's a great traveler, tho' in 2 short months, I'm going to have to start buying her a ticket. Apparently, the FAA doesn't care about special needs; 2 years old is the magic age for no more free rides. Since Maria can't sit un-aided, that means I have to start hauling her car seat (in addition to the stroller and backpack and my luggage). Wonderful...

I've been calling around for music therapists. Leaving lots of messages, hope to get some return calls, seems like music therapy is in high demand...

Went to the new speech therapist today. I'm confused about how long she'll be seeing Maria; she prioritizes cochlear implant kids, so I found another therapist, maybe, at United Cerebral Palsy. She goes in for a speech evaluation in a couple weeks (assuming they can wade through the insurance crap). It'll be a hard place to be/see, but it's close to our house, they have a good reputation, and they might be more equipped to deal with Maria than some other places. So we'll see how they do compared to the one today (who seemed rather unsure of herself, tho' she is awfully sweet).

Maria's been awake much of the past 3 nights coughing (allergies? a cold? aspiration? who knows...) I hope tonight is better, tho' it's not starting out very well, she's awake now in fact.

Vacation

2006-04-25T13:48:00.000-07:00

Maria and Cathy just got back from vacation in Oregon, which is why there hasn't been any news in a while. They saw her old speech therapist, since that's where she retired. Maria really liked the feel of the sand on the beach, so Cathy brought some home with her.

Maria sees the new speech therapist today and the Qi Gong guy Thursday.

Music therapy

2006-04-18T09:07:00.000-07:00

One of Maria's therapists mentioned that, since the hearing test showed she responded much better to music than to voice, that music therapy in addition to traditional speech therapy might help her with language development. Cathy is going to start looking into that.

Neuro reschedule

2006-04-16T20:45:00.000-07:00

Maria's neuro appointments for Wednesday have had to be rescheduled due to a conflict. I don't have the exact day but it's somewhere mid-May.

She also didn't see the new speech therapist last week because of some authorization mixup, but she's set to see her the 25th.

Maria is definitely cutting a back molar now which is part of her fussiness. I still suspect something's going on in her tummy as she's been extra gassy and, as usual, constipated. Sometimes when she's squirmy she'll calm down if I bring her knees up toward her chest, so that makes me think she's crampy.

Audiology Update

2006-04-10T13:00:00.000-07:00

Maria had her audiology visit this morning. She responded more to sounds and music than voices, which we've observed before. She seemed to hear better with the hearing aids than without, though the "without" tests were less in depth than the "with". Her right ear was more sensitive than her left. She turned toward noises on the right, less so with noises on the left. He thought there might be a little fluid in her ear, but never followed up on that and didn't seem concerned.

So we keep using the hearing aids, though he didn't see any reason to turn them up as long as she continues to make progress. He was STILL very excited about the BAER test results. He's going to give us his email address when he retires so we can keep him updated on Maria.

We stopped in the hospital cafeteria and Cathy got some chocolate cake. She gave some to Maria and as soon as Maria saw the forkful of chocolate coming toward her her face just lit up. Her vision may not be perfect, but she knows chocolate when she sees it!

Maria's busy social schedule

2006-04-06T13:00:00.000-07:00

It's been longer than usual since the last update since nothing really exciting has been happening. One thing is that a couple of the therapists said we need to begin looking around at some kind of transport device for Maria. Once she turns 3 she will probably start preschool at the Foundation for Blind Children (FBC). If she isn't walking they need some way to cart her around. There are apparently these transports that aren't quite wheelchairs and aren't quite strollers but something in between. It's not something Cathy needs to rush out and do this second but it's something to think about.

Everyone has noticed that Maria has started to reach out when she sees people, kind of a "pick me up" gesture. She also appears to be cutting her two-year molars. Or maybe she isn't. We can't really decide. But she's been awfully fussy and uncomfortable and seems to be showing her teething behavior.

She got her new Bumbo Seat. It's a low-backed seat designed to help babies learn to sit upright. It's surprising how well it works. She still arches back some, but usually she sits in it better than she does in her other chairs. I'll get a picture of her in it one of these days.

Maria has a busy week coming up. Tomorrow the FBC is having "Farm Day" where they take some of the kids out to see some farm animals. Cathy took Maria to a petting zoo recently and, though she was indifferent to most of the animals, Maria really loved the pony. (What is it with girls and horses?) So Cathy is going to take her to Farm Day. Saturday she sees the Qi Gong guy again. Monday is the audiologist for a booth test both with and without the hearing aids. Tuesday is the first visit with the new speech therapist. There are a couple of other things but I'm too lazy to go look at the calendar. Then on the 19th she sees the neurologist and the neurosurgeon to talk about the last MRI.

Another new video

2006-03-24T12:10:00.000-07:00

Yet another new video on Maria's website.

Cathy got the official report from the BAER yesterday. Lots of big words, but it basically said the same thing. He said three times in bold print that the appearance of a Wave V (brainstem) signal was new. He's obviously as excited as we are :)

Maria was a rollin' fool yesterday. We'd put her down and she'd roll and roll. She kept rolling onto the tile floor and we had to put a pillow up to block her. I'm glad that she's really getting into traveling.

I took Maria in the stander out on the patio yesterday and she really seemed to like being out there. I try and remember that she spends her whole life in the living room with an occasional break to go see a doctor, so I'm sure she likes the variety.

We may have gotten her into a new speech therapist. This is one who evaluated her back when they were considering a cochlear implant. We only saw her once or twice but we liked her. She can see Maria only every other week, but we are glad to get her into someone who specifically deals with hearing impaired kids.

New videos

2006-03-21T11:42:00.000-07:00

I uploaded four new videos to Maria's page.

One more thing that we forgot to mention about Friday is that her hearing threshold is also lower, meaning her ears are responding to fainter sounds. Before her threshold was around 60 decibels which is about the level of normal conversation. Now it's in the 40-50 range.

We talked to the physical therapist yesterday about the developmental evaluation. She agrees that sitting is important so we're going to focus on that, though we are still going to work on all the other many, many things. She thinks that ankle braces are premature (we agree).

Maria continues to be fiercly independent about feeding herself. Yesterday we got a good rhythm going. She'd reach out and I'd put the loaded spoon in her hand (I'm not making her look for the spoon at this point). She'd put the spoon right into her mouth, clamp down on it, then take her hand away. I'd take the spoon out, load it up again, and we'd repeat. She's learning not to keep holding the spoon and not to bite down so hard we can't get it out. I have to slow her down because she wants to shovel the food in faster than she can swallow it!

She beat me to it

2006-03-17T16:43:00.000-07:00

I only just now got home and Cathy has already managed to update.

I wanted to add that I, for one, am less bummed about the news from Monday. The bad news came from a doctor who has seen Maria ONE time. She also ignores the fact that a substantial part of Maria's developmental problems are vision and hearing related. Those are both improving so it seems logical that she will start developing at an accelerated pace. It occured to me that maybe the reason her other neurological skills are building so slowly is that her brain is concentrating on reparing the vision and hearing problems.

I'm not blinding myself to the possible badness down the road. I'm still very concerned by how slowly Maria develops new skills, but she's made fools of the doctors before ("She'll be completely blind her whole life", "She'll never drink from a bottle"). Mild-to-severe learning disabilities are common with hydrocephalus. That doesn't mean she can't live a normal life that includes regular school, college, and a career.

Go BAERs!

2006-03-17T16:14:00.000-07:00

Today Maria had her 3rd BAER (brain auditory e?? response) today, along with a brain MRI and a spine (lumbar) MRI. Don't know the results of the MRIs yet, but the audiologist came out and talked to use about the BAER results. He was very excited about the improvements since August. For the 1st time, he got a response from the 5th wave (certainly not the exact words he used), which means that her brainstem was processing the sound! The 5th wave was flat in both of her last hearing tests. He told us we don't need to bother with the hearing aids for a while; he wants to check her in the booth with and w/o aids before deciding whether to keep trying the aids or not.

He did say he had some bad news, however. In late May, he's retiring and moving to Costa Rica. Naturally, we told him how selfish that was. He assured us we're in good hands there (yea, whatever, he's by FAR the best audiologist in the joint). First the speech therapist, now the audiologist. Have they no shame?

When Manolis and I went into the recovery room (Uncle Andy had to stay in the waiting room because it was crowded in recovery, it was pretty scary. Maria was on oxygen, haning a hard time breathing and waking up. She had been under for quite a while and I think it was hard on her - both the anesthesia and the intubation. Pretty freaky! After quite some time, she was breathing and feeling better, so they finally let us leave. Long, exhausting day, but the good news makes it not seem quite so bad....

Neuro-developmental Pediatrician

2006-03-13T18:45:00.000-07:00

Today we went to a new doc as part of the Newborn Follow-up Clinic, which is now called the Neuro Development Evaluation Program, which is a study of babies that spent time in the NICU (newborn intensive care). Everytime we go, the appt is fine, but the report they send is so depressing that I'm bummed out for at least a couple days. This appointment, I'm sure, will be no different; except that it may be more depressing.

First of all, Maria was weighed and "lengthed" - 24 lb 14 oz (less than the 25 lb 3 oz she's been weighing since November), and 31". She's still at 10-25th percentile for length, 25-50th for weight, and 3% for head circumference -- which is low, but at least it seems to be stable, which is what they want.

I liked the doc, she is new here, but seems like she's been doing this quite a while. Toward the end of the appt, she said she thinks Maria's at about 6 months old. This is about what I thought and where she's been for quite some time. She also said that when a kid is getting close to 2 years old and is developmentally less than half that age (Maria is 20 months old, but 6 months developmentally -- less than the 10 months that is half her age), then she probably won't catch up. I don't know exactly how she said it, but bluntly that's the bottom line. This won't change what we're doing or how we're doing it. It is, however, the first time anyone has actually said this outloud, which on some level, I guess maybe I appreciate.

The other things she mentioned are that she thinks Maria should get braces for her feet. She wasn't concerned so much about the angle of her ankles, but rather with how her feet roll in to the middle (not sure if that makes sense). One doc said she could wear them in bed at night, this doc said it'd be better for her to wear them in the stander, for example. She should wear them at times when they will help her (standing), but not at other times, when they would hinder her (crawling). The other thing she focused on was getting some sort of sitting contraption to help Maria with her sitting. She's worried about her developing scoliosis if she isn't supporting herself upright with a strong, straight spine. She just said there were many options, but didn't get specific. Maybe the report will be more specific.

This Friday Maria is finally going to get a brain MRI, a lumbar MRI, and her 3rd hearing test (I forget whether it's ABR or BAER or what, too lazy to look at the Aug blog to see...). Last year a radiologist was looking at some xrays and thought he saw something not quite right with her spine, like some mild form of spina bifida or something. I'm a little concerned about the tests, but onward we march...

The good news from today is that I talked with an eye doc, whose name I've heard a lot because he's supposed to be really good with special needs kids. Anyway, he's beginning a study soon on kids with cortical visual impairment and auditory neuropathy. He wants to get them PET scans, which maps the brain in colors that shows which parts are most active and how they respond to different stimuli. Sounds very exciting. I'm quite thrilled that she's going to be part of it. Plus, one of his offices is only a couple miles from us vs her other eye doc who's 15 miles or so away. He said to call him back if I don't hear from him by April 1.

Maria's vision does seem to continue to improve slowly. The other day she looked at the mobile above her crib for the first time, which got me all excited! Her other developmental milestone is that she now grabs the spoon all the time for every meal. It began one day at one meal, I think when Uncle Andy was here. It's slow and messy, but a necessary step.

New site, old pictures

2006-03-11T14:42:00.000-07:00

I've imported all the old pictures to the new picture gallery. I've divided them out by year. The link in the March 9 update leads to the 2006 gallery, but this link takes you to all Maria's pictures.

Maria has been super-fussy for days now. We think she still must be sick. Cathy and I feel better, but she's been getting bad sore throats and I'm still coughing. We figure Maria probably also has a really bad sore throat or sinus headache or something. We wish she could tell us what was wrong rather than just yelling and yelling.

She just needs to stay healthy until Friday when those tests are supposed to be done. We really don't want to reschedule them all again.

New site, new pictures

2006-03-09T15:22:00.000-07:00

I'm moving my cyjon.net site to another host. It will probably be invisible to anyone looking at Maria's pictures, but if you have trouble getting to the site for the next couple of days, just try again later.

One of the many reasons I'm using the new host is that I found a nifty PHP script that won't work on my old host. It allows much nicer display of all the Maria pictures with a lot less work on my end. I have a little preview with a bunch of new pictures.

Tests rescheduled

2006-03-04T12:04:00.000-07:00

Maria's latest battery of tests have been rescheduled for March 17. This is the brain MRI, lumbar MRI, and BAER. Now if we can just keep her healthy until then, since they won't give her anesthesia if she's sick.

I've played with Maria on the resonance board and it's been so-so. She seems to like it at first, but gets bored with it pretty quickly. She's gotten better in the new stander, or maybe I've gotten better at putting her into it. I haven't tried her in the crawler in a long time because it takes so much effort.

I have tons of pictures and videos going back to October(!) that I've gotten ready to post to the website. I'm still playing catchup, but I hope to have them up by Monday evening at the latest.

Slowly recovering

2006-02-23T12:54:00.000-07:00

We are on the mend from our various maladies. Cathy wins the prize, having suffered from not only laryngitis and pinkeye but also a sinus infection and an ear infection. Manolis continues to mock us with his mighty Greek constitution, since he hasn't gotten even a sniffle. He's one of those people who just doesn't get sick, and seems genuinely baffled by those of us who do.

Maria continues to get better at holding the bottle. I let her slide some when she was sick and I suspect Cathy did as well, but she's still improving. I'm hoping to get her in the crawler today, but she's taking a very long nap right now.

A few weeks back Cathy got the loan of a resonance board. It's a wooden platform with a raised lip around it to hold it slightly off the ground so it will carry vibration. We are supposed to lay Maria on it and she can feel the sound of vibrating toys or when we bang on it. I keep forgetting it's there so I haven't tried her with it, but I saw the PT use it once. It seems interesting, but it's another case of "one more thing for the long list of daily activities".

Warning: Biohazard Area

2006-02-20T10:28:00.000-07:00

Everybody's sick. Not just this cold that keeps getting passed around, but the nanny has pinkeye and Cathy (who currently has severe laryngitis) thinks she may have gotten it.

Rosanne has been here over the weekend. We all went to the Greek festival on Saturday, which was fun. Other than that, we've mostly been fighting off infections.