Archive for June, 2009

Maria’s 5th Birthday

Wednesday, June 24th, 2009

Maria\'s 5th BirthdayMaria had her wild and crazy fifth birthday party – and now we have a picture. Here are a few of the highlights in no particular order.

She got a bubble machine which (sort of) blows bubbles automatically. It has a button to turn it on and Maria was enjoying it as I turned it on and off. Then she reached out very deliberately and pushed the button to make bubbles! It was very cute.

Cathy stacked her gift bags next to her for pictures. At one point Maria suddenly seemed to notice them, turned, tipped one over and started pulling stuff out. One of her presents was a set of adaptive crayon holders so she can draw. They were still in the package and she tried to tear the package open. She realized the box itself wasn’t the toy but could see stuff inside and was trying to get to it. It’s all part of a pattern she’s had over the last couple of weeks where she is more aware of objects in her universe, seeing and manipulating them on a much higher level than she was even a month ago.

We put a cupcake with five lit candles in front of her for pictures. Let’s see: fire, vision impairment, motor impariment, curious five-year old…what could possibly go wrong? Maria reached out and knocked the plate over, sending the burning cupcake rolling across her tray and the flames licking across her elbow. I got the candles away in an instant but from the expression on her face and the smell of burnt hair I guess our little girl learned “fire hot”.

Sue called from the hospital to sing Happy Birthday to her and Maria was clearly happy to hear her voice. They haven’t seen each other in at least ten days and they miss each other terribly. Sue should get out of the hospital today. She’s thinking she’ll be back caring for Maria in 3-4 weeks, and we’re thinking probably not but we’ll see.

Life Just Got More Complicated

Monday, June 22nd, 2009

Cathy mentioned we were trying out a new habilitation person as a backup for Sue. Her name is Val and she’s young and energetic which is nice because none of us are.

She came at the right time because Sue got pneumonia last week and couldn’t care for Maria. Val can work only mornings because she takes care of another kid in the afternoon but having her come was a great help to Cathy. With Manolis gone, we are down one caregiver anyhow. Sue’s pneumonia got better at the end of last week and she was going to start back with Maria tomorrow.

Cathy got out of a class today to find two messages on her cell phone. The first was from Sue saying she was having trouble breathing and was headed for urgent care. The second was from Sue’s daughter saying Sue had a heart attack, was rushed into surgery for a stent, is in ICU for two days and off work for six weeks. Yikes!

Of course this is worse for Sue and her family, but it’s going to kind of awkward for us too. I’ll have to cover Sue’s shifts this week since Cathy has her class. For future weeks we aren’t sure. Cathy may have to work from home for a while and we might have to get someone else in, but it’s hard to find people who want to work part time.

We’ll figure it out but with no school, no Manolis and now no Sue it’s going to be interesting.

Tech Talk

Saturday, June 20th, 2009

Well we finally got some templates finished for Maria’s communication device, the Tech Talk. It has room for 8 pictures, and you can have 12 templates. We have to decide what words and pictures we want, then place them in the proper place, pick the background, dependent on if it’s a verb (pink background) or noun (yellow background), etc. Take for example bed or bedtime. Those are nouns, but if you say let’s go to bed, that’s more of a verb. So anyway, it’s not as simple as it sounds. After we pick the words, and backgrounds, and locations, then we have to print them (on 8 1/2 x 14), and for some reason it’s printing a bunch of blank pages…. Then we have to cut them to size, but the size indicated is too big, so we cut it smaller. Not done yet! Then I had to go to Kinkos to laminate them (of course the laminator wasn’t wroking so the chicky behind the counter had to do it, much to her dismay). By this time, hours have passed, Maria’s getting cranky, and I still have to cut them so they’ll fit in the device. Of course, I didn’t quite cut the paper small enough, so when I cut the laminated pages, some of the lamination doesn’t totally overlap with the paper, which just means that moisture can leak in, but it still works. Whew! Now we can use it. THAT is why we wanted the computer-based device, but WhatEver!!!

Yesterday, Maria hit the “all done” with her elbow twice. We weren’t sure if she did it on purpose, so I gave her a couple bites just in case she didn’t mean it (she hadn’t eaten much). Then this morning, I put it in on the floor with her and she touched “I want to eat” a few times. It was kinda late, she slept in because she didn’t sleep well last night, so it’s quite possible she really did want to eat. So I immediately put her in her high chair and gave her a few bites while I got her milk and medicine and breakfast ready. Hmmmm, could have been on purpose…

Swimming!

Monday, June 15th, 2009

Yesterday I took Maria swimming for the first time this year. She loved it! She was smiling the whole time and seemed to be fairly at ease most of the time. The one time she wasn’t so relaxed was when I was holding her “swimming” on her tummy; it’s a good position because she holds her head up, which is good for her upper back muscles. Anyway, she moved in such a way that I “dropped” her in the water and she went under for half a second. It scared her, but she got over it pretty quickly.

The water wasn’t very warm, and since we went at 5pm, the air temp wasn’t so warm either. When we got out of the water, I was so cold my teeth were chattering, and as I was trying to get the towels out and around us, Maria yelled — I’m sure it was because she was cold. It was great! That’s the first time I remember her reacting to a temperature issue-hot or cold.

Funny thing is this afternoon Andy took her swimming to the same pool and she didn’t seem to be having such a good time–and it was warmer. Maybe she just missed her mama.

One day last week, Barb (physical therapist) said Maria did the best she’s done since last summer in walking. She took several steps independently. And Kristin (speech therapist) said Maria waved bye at her and signed “more” without being prompted. She’s really been doing great lately!

We’re going to try out a back-up habilitation person tomorrow. She’s the daughter of a co-worker, she’s going to school next year to be an occupational therapist. She’ll get lots of practice with lots of different things with Maria! She’s going to work some mornings so Sue doesn’t have to work 10 hours. Sue has pneumonia, and her hip has been hurting a lot, and something’s going on with her ankle, so I feel better having a potential back-up. The other good thing about Valerie is she’s young, which is a novelty with Maria’s caregivers–we’re all so old!! I’m hoping they can do a lot of walking practice at least, since that’s the most physically demanding activity.

Good News from Orthopedics

Friday, June 12th, 2009

Maria had her first visit with the orthopedic doctor here in Phoenix. Up until now we’ve had to use Shriner’s because PCH had no orthopedics or something like that. Anyhow, it will be nice to have a doctor locally rather than flying to Salt Lake.

They did x-rays, although their machine was on the fritz. They’ve apparently grown a lot in the last year and are still using the one x-ray machine so it keeps breaking down. They did films of her hips and back and he says they look better. Her hip displasia is improving, which he said is very rare, and her scoliosis is very minor. He said we don’t need to get a back brace for her (yay) and we would be better just focusing on standing, walking, etc.

Maria is starting to show interest in walking and standing again. She likes to use those pullup bars Manolis put in, though she needs a little help with balance. The PT wants her to walk without her AFOs so she can get the tactile input from the floor to help her orient herself. She will be getting two PT appointments a week over the summer, and she improved the last time she got extra therapy.

She’s been having terrible allergies. We give her Claritin which seems to help but she’s definitely not happy when her nose is itchy. She understands that rubbing her nose makes it feel better and that’s exciting from a cognitive point of view. Unfortunately she doesn’t know when to stop rubbing and her nose can get very red and irritated.

Manolis has gotten settled in back in Greece. He’s staying in a nicer place than he usually does, but of course he misses Maria and is counting the days until he comes back.

Back From Alaska, Daddy’s off to Greece

Friday, June 5th, 2009

We had a great time in Alaska — well I had a great time, Maria had a very good time, and Manolis, his mind was on going to Crete, so he enjoyed himself, but not to the fullest. We flew to Anchorage on Alaska Airlines. They broke a part on Maria’s stroller, but I didn’t notice until the next day and didn’t call until we returned home. Fortunately, the part is only $55, and fortunately they agreed to pay for it. I don’t know how to fly with that stroller w/o it getting pieces broken, unless it’s in the travel bag, which is huge.

We stayed with Auntie Carolyn for a couple nights, did a little sightseeing; then took the train to Seward. I love traveling by train. It’s slow and comfortable and beautiful scenery; you can get up and walk around and eat and drink. Awesome! We checked onto the ship early and had a real nice lunch. Then Manolis and Maria took a nap, while I walked around town with Carolyn and her 2 friends.

We were on the Veendam, a Holland America ship. Great service, great food, nice people. The shows were Broadway-like, so I didn’t love them, but the couple I saw were ok. Maria enjoyed them somewhat. The room didn’t have a fridge or microwave, of course, so Maria had to drink straight, room-temp Pediasure in the room. We were able to get warmed milk at the coffee bar and in the main dining room. There were plenty of things Maria could eat–for example, lots of salmon! They brought her avocado a lot, soups, mashed potatoes, yogurt, many good things. When we were on the Norweigan ship in Hawaii, we couldn’t find too much variety in foods suitable for her. I much preferred this cruise. Not so crazy about the formal nights, but they did serve us King Crab legs one night and steak and lobster the other night, so that was worth it!

We had 3 days at sea, which were relaxing (or boring, from Manoli’s point of view). We stopped in Haines, Juneau, and Ketchikan. Haines is tiny and not wheelchair friendly. We carried Maria’s stroller up the stairs to 2 stores, then said forget it and just walked around town. In Juneau, we took a tram up a steep hill and looked around. While standing on a platform overlooking the town and sea, Maria grabbed the bars of the fence around the platform and tried to pull herself up out of her chair to see. Cute and scary. Manolis took her up a steep, slippery, muddy hill. Less cute, more scary. I found a beautiful carved fish plaque by Herman Miller in Juneau. I loved Ketchikan. Manolis and Maria took another nap while I wandered around town. It reminded me of the scenery in Twilight (my fave vampire-love movie). I was talking with Sue when I saw a seal swimming around in the river that goes through town, got several photos of it. Also got lots of photos of totem poles–love those totem poles! I went to get Manolis & Maria to come see the town; they liked it too!

I think everyone on the ship knew Maria. We got lots of compliments about what good parents we are. One lady said, “I don’t know who loves her more, you or your husband.” Most of the older ladies, 2 old men, and most of the young waiters/bus boys just adored her. One woman in an elevator said how pretty Maria is, and Maria immediately turned to look at her! Although she didn’t get her daily naps, she slept real well at night and ate well, and got lots of attention, as usual!

We got home late Sunday night. Uncle Andy came to get us and as tired as Maria was, she was happy to see him. (that last plane flight was rough on her, she’d had enough by then!!). She’s been tired, but still eating/drinking since we’ve been back. Good signs! If you recall, when we got back from Hawaii, she ended up in the hospital because she wasn’t eating or drinking and was very lethargic. Thurs morning we took Manolis to the airport for Athens. He’ll be back Oct 12. It was hard saying goodbye. Maria was clearly out of sorts Wed & Thursday. She knew something was going on… It’s going to be a long summer!