Archive for March, 2007

Folk Festival

Monday, March 26th, 2007

Maria and I went to the Folk Festival here in Phoenix today. What a wonderful event it was! It’s the first festival we’ve gone to where we actually stayed and enjoyed ourselves, rather than walking around once to see everything, eating something, then splitting before the crowds got too crazy. It was at Encanto Park, a huge park near downtown. There were 6 or 8 formal “stages” where individuals and groups played, changing every half hour; in addition, there were clusters of people everywhere just jamming. It was all about the music. Only a couple booths were selling things (t-shirts and CDs, and one small stand with hot dogs and pop). The weather was perfect, plenty of shade and chairs and room to sit on the grass. Maria seemed to like it. Often when we go to events, she gets stiff and stressed. She seemed relaxed and calm at this one, probably because of the music. There was enough going on that we could sit right up front if we chose since the crowds weren’t overwhelming. This will be a “can’t miss” event from now on!

I think Maria’s brain is growing and maturing since she’s been sleeping so well. She seems to be making some nice cognitive jumps. My artist friend, Monica, is visiting and she noticed a huge difference in Maria just since early December when she last saw her. Maria & I are going back to Oregon in early May after Manolis leaves. It’s going to be a tough summer without him. At least her sleeping is under control, so I won’t have that issue to deal with w/o him. Wonder how Maria’s going to react…

I’m writing Maria’s transition book. Her early intervention specialist usually writes them for her kids when they transition from the early intervention program (0 to 3 years old) to pre-school (3 and older). It’s written from the child’s standpoint, has photos, and is intended to let the school personnel get to know Maria w/o having to rely on clinical reports and test results. Mine is a little longer than the samples she showed me (naturally), but I tried to edit it down as much as I can. I wanted to include all the pertinent info to help a teacher realize her strengths and areas needing improvement (can’t say weaknesses)–you know, hearing, vision, communication, eating/drinking, social interaction, gross and fine motor skills, that kind of thing. Now I just need to add a few photos. We’re going to have quite a crowd there–I will be there with Maria, Uncle Andy, nanny, early intervention, deaf school rep, blind school rep, hopefully physical therapist, and whoever is there to represent the public school district. I hope it’s a big room!

New videos

Sunday, March 18th, 2007

Yes, after nine months (!) we are finally posting some new video clips. Seven new videos are on the main site.

Glimmers of communication

Friday, March 16th, 2007

I was tickling Maria the other day. She is rarely ticklish, but this was one of those days. I’d stop and she’d wait a second, then she’d start rubbing her stomach so I’d start again. It was very cute and a clear example of communication. She was doing a similar thing when I was sitting on the rocking chair with her. I’d stop, and she’d start kicking her legs so I’d start again.

I also think she’s starting to make the “eat” sign. It’s hard to tell because sometimes she’s just putting her thumb in her mouth (which is a no-no when Uncle Andy is feeding her), but it’s happened several times. She’s also started doing some things like putting out her tongue, which Cathy thinks means “I’m hungry” and I think means “I’m thirsty”. Either way, it again seems to be a sign of communication.

She’s started offering food and her bottle to other people – well me at least since I’m her favorite 🙂 She’s been doing it for a while, but seldom enough that I wasn’t sure it was real or not. She’s doing it much more often now. That’s a big milestone.

She sees the eye doctor next week. Her chalazion has been coming back lately and we’ve gone back to using the hot packs. Her eyes seem to be working in synch better, but we’re not always that good about the eye patching.

Cathy got Maria’s AFOs tweaked on again this week. Talking to the orthotist she realizes that we have apparently been doing a poor job of getting the AFOs on. It’s very important that Maria’s heel be fully down or we are just reinforcing the foot position we are trying to correct and it looks like we have often been putting them on wrong. The problem is there is no reliable way to tell. We’re going to be more diligent about it though.

Cathy is still trying to figure out the wheelchair thing with Maria. We have to have some kind of conveyance for her when she starts school this fall. She’s been talking to the insurance, the state agency, and the equipment provider and she’s very confused. It looks like we’d need to get a wheelchair and a specialized stroller. There are all kinds though and no showroom to look at them so it may be a matter of pick a brand at random and hope it’s the one we need. We’re going to talk to the PT and hope she can give us some more guidance.

We keep talking about the fact that Cathy is intelligent and educated and can’t figure this stuff out. There are a lot of people out there who are neither – what the heck do they do? It’s quite a mess sometimes.

She is SUCH a two year old sometimes

Thursday, March 8th, 2007

Every time I sit down to update, it seems I get stopped by some problem or other. Hence moving the website, moving the blog, etc. Finally I think I can post a real update.

Maria has been going through a phase where she refuses to take naps so spends the day tired and cranky. She’s been doing this for weeks and it’s a bit wearing. She finally went to sleep just now because I stuck her in her crib and left her there while she fussed and yelled for a half hour. I’m glad she’s sleeping so much better at night because she sure has trouble sleeping during the day.

I can’t remember if we’ve talked about the new music therapist but we really like her. She brings things out in Maria that no one else does. Maria will strum her guitar and play a drum with a drumstick. She follows movements and is starting to track objects, though she often needs a couple seconds to process. That’s one thing I still need to remind myself – you have to give Maria extra time to process objects that she sees.

Her vision continues to improve. She reacts to things several feet away and can clearly recognize people. She seems to have a bit of a problem with depth perception, for example having trouble hitting the drum because she keeps swatting at the air in front of it.

Maria’s daddy is going back to Greece this summer. He has to get some sailing experience to keep his credentials current so he’ll head back for a few months this year and a few next year. Cathy and Maria will probably go visit him in the fall and we are trying to figure out how I can go as well, since Cathy’s a little leery about taking Maria on an international trip all by herself.

I still have some videos and a few more pictures of Maria I’ll post on the main site, possibly this weekend since I don’t have any work right now. I also would like to make some changes to the blog formatting, such as adding Maria’s picture back.

Although most of you know Maria intimately, we are getting visits from more relatives and other people who may not know the whole story. I scribbled out a few details on the big picture on the About link on the right side of the page.

New pictures

Monday, March 5th, 2007

Several dozen new pictures going back to October have been put up.

Maria’s blog is at its new home

Monday, March 5th, 2007

Welcome to the new location of Maria’s blog. By moving it here and converting it to WordPress, I should have more control over it and I shouldn’t have as many problems as I had with Blogger.

All of the old posts are here. Should you ever need it, the old blog will stay up at http://mariaroseblog.blogspot.com for the forseeable future.

Go Daddy!

Monday, March 5th, 2007

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

Saturday, March 3rd, 2007

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

Thursday, March 1st, 2007

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.