Maria Rose

Sunday, Maria was channeling Renesmee again (you know, from the Twilight series, those books about vampires; Renesmee’s the cute little one). We were having a nice little snuggle, when she bit my neck; not a full mouth bite, just a little nip from her long, sharp canines. You’ve gotta watch that one!

On the bright side, she did really well at the pool Sunday. She could tell where we were before getting in the water, maybe even just coming in the gate, because she was smiling. She took a LOT of steps in the pool. There’s a step at perfect depth for her to walk on. I held her at the waist or held her hands and she moved her feet by herself!! Monday, she broke her current record 3 or 4 times in a row with Barb, the physical therapist. She took 30 steps, then 60 steps, then 90 steps on her own (meaning she’s being held upright, but she moves her feet by herself).

We think those two days tired her out, because Tuesday she didn’t do very well. I’m going to take her to the pool this afternoon and try some more pool walking. Barb’s not coming back until Friday, so we’ll see how she does then.

Chris and Kristin (occupational and speech therapists) came this morning and came up with a 20-minute “routine” to get Maria focused. It starts with rolling her on the ground, then sitting up, then rolling on a ball; all the time giving her “input”, where you’re pushing on different parts of her body to help her be more aware of her body in space. You can tell she likes it because she’s grinning the whole time and not sucking her thumb much. Then she’s focused enough to do the OT or speech work. For Barb what we do is 15-20 min of deep massage on her legs and feet, which seems to help her walk better.

We went for a Jin Shin Jyutsu treatment this weekend. Wonder if that’s why she’s doing so well this week??

Maria 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.

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.

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…

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.

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.

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!

Wow. Today was a rough one. It was Maria’s last day of developmental preschool–where she’s been for 2 years. Her teacher and paraprofessionals are deeply in love with her and it was quite emotional when we said goodbye for the last time. Plus, only 2 of her classmates are going to Maria’s new school, and neither of those is Samantha, who has been such a good friend to Maria, but I suppose she’ll make new friends.

Yesterday was water day at school. Nanny Sue stayed with Maria all morning; I dropped in for a few minutes after visiting the new school. I’m so glad I did–Maria was in hog heaven! She was lounging in the kiddie pool, playing hide-and-seek with Sue’s dress. They put her on a little car and she went down a track through a puddle of water (which I never would have thought she could do), but she was hanging on real tight, her feet were in the proper position, and she had the biggest grin on her face. It was magical!! She’s been in such a good mood all week (maybe she’s excited about our trip to Alaska?).

When Manolis and I were at Maria’s new school I let them know I have been underwhelmed by them so far; fortunately this visit was pretty good. I liked the PT that walked around with us, she seemed excited to work with Maria next year. The vice-principal, who won’t be back next year, was very nice and positive (although she did admit that Maria would probably be the “most special” kid in the entire elementary school…. What mom wants to hear that?!) We talked with the nurse (who’s retiring this year) about Maria’s meds, saw the diaper changing area, cafeteria, classrooms, playground, briefly met the principal (the one who wouldn’t return my calls).

I gave them another copy of Maria’s transition book (something I highly recommend– it’s a story, written in 1st person, about your child’s likes and dislikes, conditions, things to watch out for, etc. It has photos so they know who it’s about. I give it to the new teachers, therapists, etc.), and I gave them a 1-pager summarizing my concerns. I emphasized that Maria has two life-threatening conditions: seizures, which are mostly under control but could emerge again at any time, and swallowing difficulties, with which she could choke and die with one wrong swallow. Yes, I overdramatized a bit, but I don’t know who’s going to be dealing with her, so I need to be a bit dramatic (especially since Maria’s pediatrician has accused me–rightly so–of being too cavalier at times with Maria’s issues).

They invited me to come in a couple days before school starts to train the teachers, therapists, whoever, about Maria’s needs; and they invited me to come the 1st day of school and train them on her medication and feeding. Much more inviting than the previous 2 visits! They got the message that I wasn’t a happy camper w/o me having to be too much of a bitch. I have heard good things about this school, we’ll see soon enough. Fortunately, after this visit I feel a bit more at ease, although they don’t know who the general education or special education teachers will be yet, or the paraprofessionals who will be assigned to be with Maria all day (1 in the morning and 1 in the afternoon), so I won’t really relax until I see who they are and how they handle Maria. Can we be so lucky to have another Kelli or Denise??

Oh, yea, and I also mentioned the GAO report released yesterday on abuse of special needs kids in public schools (very scary report, OMG!) and how none of that better happen to our sweet princess.

Maria’s been doing pretty well lately. She’s developed a rash around her mouth and nose. I know she’s gotten it before but I can’t find other mentions in the blog. Our best guess is it’s because she sucks her thumb. Her fist traps the moisture and heat against her skin and when it gets hot she gets a kind of heat rash. I put some skin healing goop on it (organic, natural, blah blah blah) and it seemed to help but every time she rubs it, it gets inflamed again.

Manolis just finished putting some pullup bars on the wall. We are hoping Maria can use them to get up into a standing position. She’ll need assistance but it will be good exercise for her. Maria used them for a few minutes and seemed to like them but was unsure what to do. We’ll have to work with her some more before she gets it. I’m curious what the PT will think.

We continue to try to get the augcomm device going. We went to the school to have her school speech therapist help us with the overlays but she was, um, less than helpful. She understood the software a bit more than we did but was baffled by simple things like printing the overlays out. Maria’s normal speech therapist was supposed to be there which would have helped, but she got sick. That was unfortunate timing because she’s off for the next two weeks to get married. These silly therapists who think they have the right to personal lives!

Maria has outgrown her crib and Cathy’s been trying to find a good big girl bed for her. It needs rails but beds with rails are “special needs” beds so are much more expensive than normal beds. She finally found a good one at Ikea that they are getting today so Manolis can get it put together before he leaves.

The last day of school is Thursday then they are off on their cruise. As soon as they get back, Manolis heads back to Greece for four months. It’s going to be interesting.

Yesterday was Maria’s promotion ceremony (the teacher said they can’t call it “graduation” because that’s reserved for high school. whatever) at school. Just like last year, the kids sang songs, did their ABCs, and a couple other things. Maria was the first name to be called and I wasn’t quite ready. I videotaped it from the back row, so there are heads in the way, but it’s still ok. 4 or 5 other kids graduated, the rest are in preschool for one more year. As far as I know, only 2 of the girls are going to Maria’s school. Her good friend, Samantha, is staying at this school unfortunately. She was really good to Maria.

It’s pretty tough seeing a class full of kids, some a year younger than Maria, all singing, sitting up straight, saying the alphabet, etc etc while Maria sits there in her own little world. She looked pretty stressed, actually. I just don’t know how parents of special kids do it. Sue wasn’t feeling well, so didn’t come. Just as well because she certainly would have cried, which would have gotten me going. Seemed fragile enough w/o that. It just doesn’t seem to get any easier.

I’ve been trying to get over to Maria’s new school. I was going to just show up this morning, but sent an early morning email to the “intervention specialist” who finally called me back. She went on and on and on and on about how I couldn’t go see the regular classroom or the special needs classroom, confidentiality and disruption and none of the teachers will be the same and everything is in an uproar and and and and. But she did offer to take me around campus, to which I replied, “don’t take this wrong, but I don’t really care about the campus, I care about what situation Maria will be in next year every day all day.” I then proceeded to tell her how important my daughter’s happiness, security, etc is. How I understand that not all people are able to be around kids like Maria and how that’s ok, but Maria will not be with a teacher like that. And if I can’t see the classrooms now, then I will see them in the fall when she’s in class and if it doesn’t work out I will move her to a classroom that fits her better. She mellowed a bit then and the end result is I’m going in on Tuesday with my list of concerns (I guess it’s not spelled out well enough in her 20-page IEP [individual education plan] or in the transition book I wrote about Maria, complete with color photos, that specifically talked about Maria’s likes, dislikes, strengths, and areas to watch out for.) I told her it was all in the transition book, but that I’d write up some bullets if that would be better for her. I’m going to her school a day or two before classes start to “train” them on feeding, etc. and I’m going to sit in her class at least one day the first week. I suppose that’s good enough.

So far my introductions to this school have not left me with joy or comfort. I’ve heard good things about the school and the principal, but I’m not feelin’ it.