Archive for January, 2007

sick or Sick?

Monday, January 29th, 2007

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

Sunday, January 28th, 2007

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!

Tuesday, January 16th, 2007

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

Thursday, January 11th, 2007

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

Monday, January 8th, 2007

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!

Thursday, January 4th, 2007

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!