Archive for June, 2006

Birthday Party!

Tuesday, June 27th, 2006

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!!

Saturday, June 24th, 2006

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…

Friday, June 23rd, 2006

…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

Tuesday, June 20th, 2006

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

Monday, June 19th, 2006

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

Saturday, June 17th, 2006

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

Wednesday, June 14th, 2006

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

Tuesday, June 13th, 2006

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

Monday, June 5th, 2006

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?

Sunday, June 4th, 2006

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.