Maria Rose

Cathy was having trouble posting pictures on the Christmas 2010 entry. I fixed it but you’ll have to go that that entry to see them.

I think I was 16 or 17 when I got my first car–which I had to pay for, of course. $1000 for a ‘69 Pontiac Lemans. My dad let me buy it so I wouldn’t hitchhike between school and work anymore.

Maria is 6 years old and got her first car–which her parents are paying for. It’s a brand new (almost–a year old–it’s practically new) van that barely fits into the garage. It’s roomy enough for her wheelchair AND her bike AND 2 people, plus Maria, of course. 4 people can ride in the van (w/o the bike), but Maria has to sit farther back. Or we could fit 2 wheelchairs and 2 other people. It feels huge, especially when parking, but we’ll get used to it.

Car payments for the next 10 years. Better than back surgery from putting Maria in and out of the RAV as she gets bigger and heavier! Now our family has 3 people and 3 cars. wow.

We FINALLY got Maria’s new wheelchair today. The frame is a deep purplish blue and the cushions are electric pink. It’s quite lovely (for a stinkin’ wheelchair). It’s wider, taller, and longer than her Swifty stroller. It does fold down, so it fit in my car, but it’s not an easy 1-person thing. Do-able, but not easy. It took them 2 hours to put it together and adjust it, and when we got home, I realized the adjustable arm rests still aren’t right. Arg! Plus, they sent ginormous ankle straps instead of the butterfly vest/chest strap that we ordered. They gave us a temporary chest strap so she can use the new chair on the bus now, rather than waiting even longer for the butterfly vest. The people who orderred it and put it together/adjusted it are very nice, but I’m so not impressed with their customer service. They weren’t at all communicative during the ordering, shipping process; and today, I kept asking what’s this for, what’s that for, does it do this, how do you do that. At least we have it now. She should have it for several years, because there’s lots of room for growth in it and she’s at the bottom of the size range for it. I’d post a picture, but I need to download them off my camera still. soon….

She looks real good in the chair, seems to like it. Wish I could be at school with her tomorrow to see how the kids like it!

Manoli’s having a bit of a hard time with it (sucks to have to get a wheelchair for your precious 6-year old girl). Me too, but I’m trying to focus on the pretty colors. It’s as wide as her bike, so the bike should fit in the van when we get it. That’s really going to suck when we have to start paying car payments. But I’ve promised myself to quit complaining about having to get (pay for) a wheelchair van after we bring one home. I don’t want Maria to think I’m blaming her. I’ve had a year or so to think about it and complain about it, so in the next couple weeks it’ll be time to shut up, accept it, and move on.

Speaking of bikes — Maria got invited to a BMX birthday party! I’m going to take her and her bike and hope there’s a place she can ride w/o getting run over by the wild ones. I think she’ll really enjoy it, and I’m sure the kids will be excited that she can bike with them!

We had a nice, quiet Christmas. It seemed like Maria knew it was Christmas — she didn’t sleep well the night before and she was wild on Christmas day! Just goofy and active and in a good mood. She only opened a few of her presents, then a few more the day after, and she even has 2 more that she hasn’t opened yet. She wasn’t quite as into opening the presents this year as she was for her birthday; maybe because most of them were wrapped, rather than in gift bags. She prefers gift bags.

She went for a bike ride with Uncle Andy just before sunset and saw lots of her friends and schoolmates on the way, which is awesome! The AZ Cardinals played an exciting game Christmas evening, lots of phone calls with friends and family, so all-in-all Christmas was good.

Over the weekend, we took Maria for a little hike. Manolis held her arms around his neck, like she was riding piggy back (except of course, her legs were dangling free). It didn’t look too comfortable, but she seemed to like it! We also found out that Maria likes coffee, coke (she drank about half a can of unthickened Coke at 7pm one night — courtesy of her daddy, duh), and candy canes.

Yesterday was a big day–Maria’s daddy had eye surgery (the whites of one eye was growing into the iris, don’t remember what it’s called) and Maria was P.E. student of the day!!! I don’t know what that means, but it’s very exciting!

Manolis is doing well. His doc said he looked good at his follow-up appt today. He has to take it easy for a week or so, we can’t travel for 2 wks, and I think he looks like he’s in pain or discomfort (tho’ he won’t admit it); but in the scheme of things, he’s doing great and all is well.

Although things have been not super great with Maria (not sleeping well, sticking her fingers down her throat, not eating so great, more tired than usual), she still seems to be doing great in school and they seem to love her and take good care of her. For example, a recent email from her general ed teacher said “P.S. Maria couldn’t be more loved in this room. The kids look forward to her being in here and are bummed when she is not! When she had that rash and they couldn’t touch her, they were going through withdrawal!” She’s in a 1st/2nd grade classroom and the kids line up to read to her. Her teacher even got special permission from the school principal to have 2 extra recesses per week in the afternoons just so the kids could play/interact with Maria with structured games. I think that is such a thoughtful and wonderful thing of her teacher to do. This year is similar to her 2 years in preschool as far as integration and acceptance from the other kids. Kindergarten was ok, but not nearly so welcoming.

This weekend we’re going to the Shriner’s Christmas Party. I hope to get a picture of Maria with Santa. I’m a little apprehensive about going, but feel it’s important, because of Santa and seeing other kids who are similar to Maria, and because I think I’m going to ask them to help us pay for the wheelchair van…..so it’ll be good to remind them who Maria is and how cute she is!

Still no wheelchair. It’s been more than 6 months since our first visit to be fitted for the new chair. It was back-ordered until Nov 24, but when I called this week, they hadn’t gotten it yet. They were supposed to return my call with an update, but it’s been 2-3 days, and I haven’t heard back from them. They were nice people, but very unhelpful. Never any updates, unless asked to by the liaison working with us from Accordant Healthcare (part of Blue Cross). The liaison is a nurse and is AWESOME! She calls me frequently and calls the medical equipment company often to ask them what’s the hold-up. Oh well, I guess it’s just prolonging our van purchase (which is a good thing!)

We went to the Faerie Festival in Estrella Park in Goodyear. The weather wasn’t so great and the festival certainly could have been better, but the face painting was fantastic!

Maria lost her first tooth the week before Thanksgiving; of course it was the first of 3 nights I was away, so I missed it. I keep meaning to put it under her pillow for the tooth fairy, but I think she’s on vacation, so I’ll wait a bit.

Manolis, Maria, and I went to NM for Thanksgiving. Andy stayed home to work (and take care of the kitties). We had a nice time, as usual. Maria really enjoys hanging out with her Grandpa and he with her, although he probably would never admit it. It was good to see Aunt Louise and the cousins; and of course, good food as usual. She tried to stick her fingers down her throat and vomit about 50 times on the way home.

Maria had an appt with the gastroenterologist this week. He’s going to scope her to see if her vomiting, not sleeping, nose rubbing, not eating, etc is from reflux or Sandifer’s Syndrome or food allergies or something with the white hairs in the intestines or a virus. He’s also going to put some capsule down her throat that will register the level of acid going up and down for two days. He thinks it will be before Christmas. I like the doc (much better than her first one…). She lost 2 1/2 pounds since the last time she was weighed. Not so great, but not surprising since she hasn’t been eating or drinking well lately.

It’s been great having Manolis home. Maria’s happier. So are Manolis and I. I’m much more relaxed. We’re all very glad he’s retired now and can stay home to be a house husband.

Manolis got back from Greece a week ago. First time ever his plane wasn’t late!! Maria reached out for him while he was still walking toward us (awesome!), and then when he picked her up, she was doing her back-arching thing (not so awesome). She’s been in a much better mood since he’s been back, but I think she’s still a little mad at him because she turns her head (while smiling) when he comes up to kiss her. As the days have passed, at least she’s hugging him now. She’s gotten more affectionate in the past 5 months — she hugs more often and holds on tighter for longer, and she rubs (pets) our arms and backs more. Very sweet.

I took Manolis to the ear/nose/throat guy Monday. The cauterized his nose (again!) but he’s still having some trouble with it, so not sure what to do. They cleaned his ears and he’s less dizzy. Did a hearing test, but we had to leave before they gave us the results–we’d been there 90 minutes and I had to be at Maria’s school for her field trip. Tuesday I took him to the eye doc. He has to have surgery on his eye in December — the white part is growing into the iris (gross!). Doc says it’s no big deal (easy for him to say!), but he seems good, competent, not so arrogant as the nose doc.

Maria’s field trip Monday was fun! It was sponsored by the fire fighters, so they had their fire hoses out, they used the jaws of life to destroy a car, they took us on a ride in the fire engine (that was fun!!), but the time I saw Maria smile the most is when they were leading exercises. Elisa (her aide) took her out of her stroller and had her doing all the exercises with the other kids and Maria was grinning like a monkey! I didn’t get very good pictures, but it was wonderful! That’s why we like her so much!

And as for me, it’s amazing how much more relaxed I am now that Manolis is back. I’m able to concentrate more at work and get more done. Now we just have to wait the 3 months and see if he’s really going to start getting his retirement $$….

A couple weekends ago, Grandpa and Grandma Ida came to visit and watch Maria for a bit so I could get a wee bit of sleep. The cutest part of the weekend was shortly after they got here, Maria started rolling and army crawling toward Grandpa Dick, then tried to pull herself up on his pants. OMG, it was adorable! She loves her Grandpa!

The 2nd weekend of October Rosanne came to Phoenix, Maria and I picked her up at the airport (after Maria missed school all week because she had a relapse of her strep) and drove 3.5 hrs to a bed and breakfast in Sierra Vista (south of Tucson). We spent the whole weekend bird watching and hanging out. It was great! Rosie came here to celebrate our birthdays–mine’s the 12th and hers is the 14th.

We went to Ramsey Canyon, which is supposed to be such a great birding place. The gift store was nice, but the canyon wasn’t very wheelchair accessible, so it was a big pain in the ass to drag Maria up there. I couldn’t tell if she liked the bumpy ride or not. I don’t know why it irritated me so much that it wasn’t accessible; it’s owned/managed by The Nature Conservancy, so they’re not required to follow the Americans with Disabilities Act. I guess I was annoyed because it wouldn’t be all that tough to smooth out the road a bit, which would allow lots more people to experience the place. Plus we didn’t see squat for birds. I’d give it about a D.

We went to the mining town of Bisbee, which reminds me a lot of Jerome, but smaller. Cute little town; most people were super friendly. We ate at a restaurant where an older gentleman said hi to Maria, then she grabbed his hand and started pulling him toward her. Very cute. A lady that worked there had spent a lot of time in Crete, so we talked about that for a while. Food was good too! I bought a cute tie dye skirt and a loose floppy dress at various little artsy fartsy stores. Some of the places were super expensive (not where I got those items, but some other places). Turns out a couple days after we left I heard a news story that they’d found a pile of human bones. Apparently a place was supposed to be cremating cadavers and they just dumped the bones instead. Creepy!

My favorite place was the San Pedro Riparian National Conservation Area, run by the BLM! The gift store was awesome!! Great books — I got some bird books on sale, a Southwest Slow Cooker cookbook, and a Dr Suess book about birds. Fantastic selection! Plus, since it’s managed by a federal agency, they DO have to follow ADA, so there were lots of accessible trails. We sat under a big tree for a while, then walked down to the river. Rosanne walked farther down the trail to the pond (not so great she said), while Maria and I stayed by the river. I took off her shoes and socks and stood with her in the sand next to the river; she was grinning like a monkey (she LOVES water!). She’d stand for a bit and then move her feet real fast, like she wanted to run to the water, so I’d hold her while she “ran” into the river. We did that several times, then just sat in the sand, while she chilled out and I checked out the birds through my binocs. I saw lots of cool birds, but for some reason the voice in my head that usually tells me what birds I’m looking at was curiously silent, so I didn’t identify any new life birds. I’d go back there any day!

The other place I really liked was Ash Canyon Bed & Breakfast. We paid $5 each ($10 total) to go sit in the yard and look at birds (the $ is to help her pay for bird food). We saw lots of birds, as well as squirrels, rabbits, a deer and a fawn, and a flock of turkeys. It was quiet and relaxing and very active (wildlife, not people) with lots of places to sit. Might be a good place to stay next time.

Our B&B was ok, not great. Loved the suite we had–a room for me, one for Rosie, an extra bedroom with a day bed, and a bathroom. Plenty of space, and Rosanne wasn’t disturbed by Maria’s antics during the night since she had her own room. She (Maria) was pretty good, except the last night when she was up most of the night. The breakfasts were the same all 3 mornings–crustless quiche, biscuits, and cut up fruit with walnuts. The coffee was Folgers. They didn’t fill the bird feeders, even though they knew we were bird watching (the hummingbird feeders were full and very busy, but I wanted a bit more diversity than just hummers). We did see some Pyrrhuloxia birds (like cardinals, but not so red), which were about the coolest birds I saw all weekend, but nothing too spectacular. We heard Great Horned Owls right outside the front door the first night; that was cool, but I didn’t see them. The owners were nice and it was a fine place, especially for the price, but next time I think we’ll stay at the other place or maybe in Bisbee.

We drove back, dropped Rosie off at the airport, and went for the 5th time to try and get Maria’s blood drawn — finally we had success!! (checking her seizure med levels — it really took 5 times and 4 places and countless sticks/pokes to get the proper amount of blood. Very aggravating!) Ever since we’ve been home, Maria has slept through the night every night. Most night she yells once, I change her diaper, and she wakes up the next morning. I’m feeling much better since I’m back to my 5-6 hrs/night. And in a couple more days, Daddy will be home and all will be back to normal…

I had a rough night Friday night, hardly slept at all, very sore throat. So Saturday morning, I took Maria with me to Urgent Care. 2 1/2 long hours later, they diagnosed me with strep and bronchitis, told me to do breathing treatments, gave me penicilliin, sent me on my way.

I sounded so desperate that Sue volunteered to come over Saturday afternoon, so I could sleep. She said she’s never seen me look so bad. I don’t remember ever feeling this bad. As far as I recall, last time I had strep was when I was 10, and I don’t think I’ve ever had bronchitis. She talked me into asking Andy to come spend the night — thank good ness I did, because although I didn’t sleep well, Maria was up a lot and it was wonderful that Andy was there to take care of her, so I could just lay in bed.

Andy stayed all day Sunday (as usual), then Sue came at 6:30pm to take the night shift. Again, thank goodness, because Maria was up a lot during the night. Although I feel guilty about disrupting their sleep — at least it’s only one night, and I really don’t think I could do it now.

But, there’s more! Last night my lower left lip was swollen, and this morning, the whole left side of my mouth and cheek was swollen. I came out to show Sue and I think it scared her a bit. So we got Maria ready for school (I was afraid she wasn’t going to make it to school, she looked bad Saturday, not sure about Sunday, but this morning she looked more clear-eyed, so off she went), and then I went back off to Urgent Care.

The doc told me I’m now allergic to Penicillin, so he gave me another antibiotic and something for the swelling. Pure madness this is!! I have a busy week scheduled this week at work. Oh well… I just hope Maria can stay at school all day AND I hope she sleeps tonight AND I hope Sue doesn’t get sick. I just need to take it easy, so I keep getting better. Crazy summer this has been. And not in a good way.

I got a call from the nurse today. She said Maria was really rubbing her nose, pushing on the roof of her mouth with her thumb, and the rash on her face was getting worse and spreading. She said she seems very uncomfortable. All the same things I’ve been emailing the teachers about. duh. So I went and picked her up early from school and took her to our Greek doctor because he’s closer and better with skin stuff than her regular pediatrician. He was puzzled and did a test for strep. Both Andy and I were thinking–”she just had a strep test 1 or 2 Fridays ago and it was negative, so of course this one will be”; and “dude. strep? really? it’s a rash on her face!” So, boy were we surprised when he came back and said it was positive!! Wow. He gave her Keflex, which helps both strep and staph.

I have not been at all careful about washing my hands after touching her face or nose (she had a boil or cold sore or something like that) or finger (similar kind of large pimple-like thing). I’ve been battlling an eye infection. You can’t really see it, but my eye is very weepy (I thought it was a clogged tear duct), incredibly painful, and is giving me a massive headache on the entire right side of my head, from the tip of my brain to my teeth. I went to the doc Thursday and she gave me some antibiotic ointment for it; I wonder if I got it from her stuff??

I know Maria has been in much discomfort for a while. It’s probably why she’s kept me up just about all night 3 times in the past 2 wks. Very annoying! I’m back at work this week and because of my lack of sleep, I feel worse this week than last. And my belly button incision is oozing again, I noticed today. I really need to be careful not to spread Maria’s strep to my belly button. That’s all we need!! Manolis is still having trouble with his nose, so he’s having as rotten of a summer as we are. We’ve only got just over a month now until he returns. I just hope we can all keep it together long enough to see that day!!

We met Maria’s new state coordinator and her supervisor. We like them both. They actually seem to care about Maria!! They talked about her, looked at her, said how cute she is!! OMG! The last 3 we’ve had have hardly even looked her way unless they were walking out the door; they were crazy/scary, not even smart enough to know how smart she isn’t (not to mention not smart enough to understand anything I said), and just plain mean as a snake. We had a very good meeting, and in fact, they’re coming back next week because we didn’t finish. The supervisor is very thorough, which I appreciate, and the coordinator is “new”–she’s back working for the state after being retired for a year. I am so glad! I was beginning to wonder if they hired anyone who cared about the kiddos.