Maria Rose

So, we are thinking of sending Maria to camp this summer. She gets out of school in a week (!), has 2 weeks off, has summer school for a month, then is off for a month before school starts again in the fall. An opportunity for her to go to camp the last week of summer school (yea, they’re really going to like that…) came up and we’re seriously considering it.

It’s a camp in the White Mountains that is run by the Lions Club for children and adults with special needs. It was built in the 50s, and is going strong and growing, even. They run purely on donations, they’ve never charged anyone for special camp! They go from Sunday to Friday, and apparently the parents are supposed to just drive away.

I filled out the application kind of on a whim, but then when I got the email response, gulp! I spent literally hours this evening filling out the medical evaluation and I’m not done. The application was very thorough, but these forms make that form look like child’s play. They are serious about this stuff! We googled the camp and it’s 3 1/2 hours away. Almost to NM! That even made Manolis gulp a little bit. He’s all for this camp stuff –realizes how good it will be for Maria, but wow. They have an open house a couple weeks before camp that I think we need to go to to check it out. Then we’ll allegedly drop off our precious one for 5 nights.

I think 8 is the youngest they’ll take. She’ll be 9 (!!) by the time she goes to camp. She’s not going next summer – for obvious reasons. So what the hell! I think this year will have to be the year of wild abandon since next summer is going to be……interesting.

Maria got me a Baskin Robbins ice cream cake for Mother’s Day. So thoughtful! And she made me a cute card at school. Her daddy got me flowers and chocolates, the usual and my favorite! I’m so lucky to be Maria’s mom — that’s gift enough for me!

ETA: Andy elbows his way in to add a link to Lions Camp Tatiyee

Maria saw her orthopedic surgeon last week. Cathy told him they have been paying so much attention to her hips since the surgery two years(!) ago that she’s worried they are ignoring the scoliosis. So they did an x-ray…and the doctor came back in looking very grim. Maria’s scoliosis is up to 55 degrees, and 40-50 is where they start looking at surgery. They don’t like doing it in kids under 10, but Maria turns 10 in a year so it looks like she’ll be spending next summer recovering from spinal surgery.

The doctor said there is nothing that can be done to prevent or slow it down, either in the past or between now and the surgery. Cathy and I were skeptical of that but my research backs that up. It’s a common side effect of CP and there is nothing to be done about it. It’s possible SOME types of scoliosis may be helped by exercise, but not CP-caused scoliosis.

As upsetting as it is to consider someone operating on Maria’s spine, the surgery should be less traumatic than the hip surgery was. I’ve always heard about “shoving steel rods in kids spines” but that’s not what it is. The goal is to trigger a few of the vertebrae to fuse together to correct the curve and prevent it from advancing. The small steel rods are there to provide temporary support, much like the hardware they put into her hips. They don’t bother removing the rods later because getting to the spine isn’t easy so it’s safer to just leave them. She will still have good spinal mobility. Recovery is pretty quick–kids who can walk are walking in three or four days! So it won’t be fun but it shouldn’t be as bad as the hip surgery was.

Manolis and I went to school today to pick up Maria. A sweet little boy who really likes Maria was in the nurse’s office also. His aide told him to say goodbye to Maria, so he went up to her and just leaned over and gave her a sweet kiss on the lips! So 5 or 6 adults were standing by watching, yet powerless to do anything because it all happened so quickly. We all cracked up — even Manolis. I thought he was going to be mad (we all did), but he laughed with us. I say it was cute and sweet and as long as it’s just a peck on the beak in front of 5 or 6 adults, then no problem. But anything more than that? I don’t think so!

We got Maria’s device (Dynavox Maestro) back today. Again. Supposedly they put in a new hard drive and battery (and the cord is new, due to a recall), so it’s basically like a new device (in my mind, not sure about in the real world). 2 more weeks of school, so she can practice a bit more using it. She does very well with it at school; she uses it to make choices of activities or food.

Apparently Maria loves Carly Rae Jepson’s song, Call Me Maybe. She’s reacted to it more than once at school on different days. Elisa (aide) said when it was playing in PE, Maria was smiling. Only that song. The girls in class sing it to her, too. So I downloaded it on my iPad today and played it when she was eating breakfast, and I swear she was trying to dance in her chair! So cute!

Maria got very upset with her daddy a couple nights ago. I was at work, Sue was sick or something. Manolis tried to put Maria in the stander and she didn’t want to be in it, so she was yelling and scratching him! Wow! (Makes me wonder if she was in the wrong position, so in pain?) She was still pissed at him when I got home, a couple hours later, and stayed mad at him until the morning! Now that’s determination! It was remarkable; I’ve never seen her do that before. Our little girl is growing up. Our “little” 57 pound girl!! I think she’ has gained 15 pounds in a year. Is that good? I have no idea.

I signed up to be a parent mentor for Feeding Matters (children with feeding difficulties) and Raising Special Kids. It’s primarily mentoring other parents on the phone. Each ‘gig’ is only supposed to take 2-4 hours per month. We’ll see… I’m working all the angles trying to figure out what i’m going to do when I retire. However, I have to do something that pays, so volunteering won’t be it, but might lead to something. I’d like to find the right partner and invent special needs stuff that doesn’t cost a crapload of $$.

In school, Maria made me the sweetest Mother’s Day card with a little pocket on the inside in which there was a coupon for a hug and a coupon for a kiss. Best. Gift. Ever. So cute!

Maria’s soccer team played against Reál Phoenix, a semi-pro team, a couple of weeks ago. It was a pretty good game. I thought the guys did a good job of bringing their game down enough to make the kids work a little but not so much it was condescending. Since they had amazing skills they were always able to put the ball wherever they wanted and control the flow of the game. Maria didn’t play though. We just sat on the sidelines and cheered on the others.

Maria isn’t the only wheelchair kid in soccer anymore. In the last two weeks two more kids in wheelchairs joined the team. I met the first and his parents seemed to enjoy it so I think he’ll be coming back. I don’t know about the second since I didn’t meet him/her.

Speaking of wheelchairs, Cathy was at Maria’s school a few weeks back and they happened to have a fire drill. They took Maria down in the elevator! Cathy said, “Um, I’m pretty sure you’re not supposed to do that,” but they said they weren’t sure what else to do. What, is Maria the first kid in a wheelchair in that school? There are ways to evacuate people in wheelchairs safely down stairs. Cathy’s bugging the school to figure it out and they are being…well not exactly resistant but not exactly cooperative. I just read a story from February about a school in NY where a girl with CP who was in a wheelchair was left behind on the third floor during a real fire, and nobody thought to tell the fire crews where she was! She’s fine but people are a teensy bit upset about it.

Meanwhile we continue to try to figure out what Maria’s whining is about. She doesn’t do it all the time but when she does it’s quite heart-wrenching. The orthopedic surgeon did x-rays and confirmed there are no fractures. The neurologist–well the physician assistant anyhow since the doctor didn’t have an appointment available for months–said it’s not a seizure. The general consensus is it’s probably a muscle spasm of some kind but we really can’t figure it out. I do think certain positions are worse but since we can’t just ask her where it hurts, it’s hard to say. There are other doctor appointments coming up I believe but I imagine that’s going to be more of “the tests don’t show anything so we don’t know what it is”.

Maria has been awake and keeping us up frequently the past couple months yelling or crying, and in obvious distress. If you know Maria, you know how strange this is. Any thoughts on what it might be? We ruled out a fracture. We’re wondering about seizure, reflux, lung something, night terrors, shunt problem, headache, muscle spasms, or something else. So now the doc appointments start. That’s why I’ve Ben putting this off, but at least I have a video now to show… It’s a 45-second video and it’s too big to upload to this site. Trying to figure out where to post it so I can send the link to Maria’s docs. Hmmm

Ok, try this link to see the video: Maria’s Latest Mystery

Twice when I’ve come to this page recently I’ve gotten a security warning from Firefox about it trying to run some wacky script. More troubling was when I tried to get into the site, my password didn’t work. I got the webhost to reset it but I’m a bit concerned.

I’ve done a virus scan on the site (found one file but not part of the blog), updated WordPress (way outdated) and poked around looking for obvious culprits but nothing came to mind. I’ll keep an eye out but I recommend our regular readers run a virus scan on their computers just to be safe.

Maria went to a new dentist last week. Her old place is farther away and was always super busy. And our favorite dentist left. The others were all nice, but we were looking for a change. This new one seems great–closer, quieter, and very good with special kids. The only down side is they’re not taking AHCCCS insurance anymore starting next month. The hygenist has a sister with Down’s so she was comfortable with and sweet to Maria. Then the dentist came in and was also super terrific. They seem to have advanced equipment and stuff. For example, they gave me a tablet computer to fill out the medical info, the handwriting turning into typed words. Anyway, they even managed to get x-rays! I assumed they’d have to put her to sleep. She even seemed to be having fun.

A couple weeks ago Maria got to kick off for that pro/semi-pro soccer game. It was so much fun!! Unfortunately, I was a little nervous, so I didn’t get out the camera, therefore I have NO pictures–very strange for me. I usually snap a pic no matter what, but I didn’t want us to miss our mark or be late.

It wasn’t too crowded, but it was kinda formal-ish, or organized. For example, it cost to get in, there was an announcer (who was hard to hear), the non-players on the team were dressed in suits. The players were all super nice and friendly. Someone from the opposite team gave Maria a scarf (Las Vegas Legends) because they had extra swag, and he has a brother with CP.

When it was time, there was another kid from Maria’s soccer team with his parents and they walked out on the field with Maria, Manolis, and I. We got Maria out of her wheelchair and swung her feet, accidentally kicking the ball just a tiny bit, so I asked for a “do-over” and we did it again and did it much better. She was smiling like a monkey! She loved it! Her daddy thought it was a little weird and was feeling, maybe embarrassed? I don’t know why.

We stuck around and watched half of the game, then went home. We sat right by the window, so we got to see it when the players or the ball smashed against the window. Maria barely flinched, but she did enjoy the action!

The next day we went to Maria’s soccer game and some of the players from Real Phoenix were there. One guy told me that all people were talking about the previous night was Maria and how she kicked the ball! So cute!

Don’t know the correct terminology, but the Real (spanish pronunciation) Phoenix Football Club came to the Sunshine League (soccer for special kids) “game” yesterday, and (of course) fell in love with Maria’s cuteness, so they asked her to kick the opening ball at their next home game against Las Vegas. It’s on Sunday night in 2 weeks at 8pm (wow). The guy told us there will be a lot of people there, and I said, “well, that’s good, because Maria loves attention!”. So now, Manolis and I have to practice, because we’re going to hold her up and swing her legs to kick the ball (otherwise, it might take a bit too long….). So exciting! Real Phoenix Semi-Pro Football (Soccer) this season, maybe she’ll move her way up to Cardinals NFL Football next fall!

She got a clean bill of health from her ortho doc. Yesterday at soccer is the first time she stood in more than a month. Yea! Now we can start putting her in her new stander again, and work on getting her a new gait trainer. According to their scale, she weighs 53 pounds now! Holy moly, I gotta start pumping more iron to hoist her around these days.

We also finally got her mounts for her communication device, so we have one set up by her feeding chair at home, and the other one is on her wheelchair for school (thanks Uncle Andy for putting them together!!).

Last week we took Maria to the AZ Science Museum to see the dinosaurs. A couple of them were animated. She was happiest when she was able to touch stuff.

This weekend, we took her to the Monster Jam–you know, those loud-as-crap big trucks that do tricks and roll over cars and flip over. They are SO LOUD!!!! She liked it for the first hour or two, then she fell asleep (with her face on the bars in front of us, of course).

We have to keep Maria well-rounded in her cultural experiences–dinosaurs, Monster Trucks, and semi-pro soccer. woo hoo….

Who’d have ever thunk it? Maria made the honor roll for the 2nd quarter of 3rd grade for making all A’s and B’s. It’s funny because I was just looking at her report card and she went down a little bit in a lot of subjects, yet this quarter she made the honor roll and last quarter she didn’t.

Anyway, we haven’t had any other significant incidents with Maria and her body fluids. I did re-do the steri-strips on her left leg (the oozing, more swollen one) and most of the incision was healing nicely, but one bit was still open and weeping. I left an opening so it could soak into the gauze, and yesterday it looked really good! I need to change the strips on her right leg now because they’re still the original ones and they’re soaked in redness….

Maria seems to be feeling better. She’s back in school this week–hasn’t come home early yet! Her eating is so-so. Her sleeping is spotty. She keeps doing the face jammed against the bars thing, yelling periodically (nightmares? pain?), and the other night I forgot to tie the scarf on the bars to close up the gap between the 2 sets of bars and she got her neck stuck in it again. OMG!! I had to wake Manolis up to help me pull her up because she’s getting so heavy, I’m afraid to try and do it myself in case I cut off her airway. Dumb dumb dumb. So glad we got the camera for her room though. It helps to see what she’s doing.

And our cold snap seems to be over. Holy moly it was cold! Below freezing for 4 or 5 nights. I’m afraid to see which of our plants won’t be able to come back, even after all the wrapping, lighting, watering, etc.