Maria Rose

Maria once again did great at her hippotherapy session yesterday. It’s her last one of the season and they won’t open again until late fall. That’s too bad because the therapy was clearly doing her a lot of good. The state did approve weekly therapies and since it is PT Cathy is wondering if we can switch the summer visits over to her normal PT and double up. Maria took twenty assisted steps and though she’s nowhere near to the point she was last October , she’s slowly getting interested in walking again.

We talked to her speech therapist about how to use the Tech/Talk. We are going to start out very simply with just “more” and “all done” on the grid and all the others blank. Once Maria starts go get the concept, we will add more words. We can create up to 12 displays and swap them out as needed for school, therapy and other activities. Our biggest problem is simply going to be forcing ourselves to use it all the time. We’ve all been pretty sloppy about using sign language around Maria, and our hands are always with us. When we have to carry this device with us, it becomes one more obstacle.

As you may have picked up from the subtle signs in Cathy’s last post, she’s cranky about the Tech/Talk. With other equipment, once we see how it helps her that makes the stress go away. The strollers/wheelchair, AFOs, stander and walker all have become useful so we like them. The hearing aids did nothing so we always hated them and were glad to see them go. Once Maria understands the Tech/Talk and starts using it, we will love the way it gives her a voice.

Finally, I’m using my experience with Maria to write about raising special needs kids in Phoenix. It’s a very low paying assignment and I normally strongly advise writers to run screaming from sites like this, but it’s an opportunity for me to create a useful resource for Phoenix parents. It’s basically my charity work. I’m hoping I can market it to a point where I’m making at least a few dollars an hour but it’s going to be slow to build a readership.

Today I went downtown to pick up Maria’s Tech Talk augmentative communication device. They were supposed to give it to our state “Support” Coordinator. I use the term “support” very loosely. I’ve been trying to get another support coordinator for more than a year now and his supervisor keeps stalling. Because of the severe budget cuts, mandatory furloughs, and lay offs, I don’t want to keep bugging him. The whole state government is in turmoil.

But I digress… Anyway, the communication device lady let me pick up the device so I wouldn’t have to deal with our coordinator. Everytime Maria gets a new piece of equipment, I go through a period of mourning or depression or angst or whatever the hell it is. One guy at work asked me why I wasn’t excited about the Tech Talk and my reply was, “a parent should not have to get a communication device for her child. A parent should be yelling at their child for cussing, or taking her to soccer practice, or having tea parites.” Sensing a bit of emotion, he quickly changed the subject by saying, “well my son is flunking art.” We all have our crosses to bear, don’t we.

As I was saying, I’m never going to be happy or excited about another piece of effing equipment. But I eventually get through it, make peace with it, and appreciate the thing that may make Maria’s life a little bit easier or more fun.

The last couple days haven’t been so great. Tuesday, Sue called in sick, so I tried to get in touch with Manolis but couldn’t, so I left a message on his cell phone, which he never got. So as I got out of my meeting, my cell phone rang. It was the teaching wondering if someone was going to pick Maria up. She was very sweet about it and Maria was fine, she got to hang out with them at lunch; but it was upsetting to all of us. We all were at fault, so it was hard to know where to focus the anger. I think we’re all getting a bit freaked about Manolis going back to Greece for several months. Just like the equipment, we know it’s necessary, but we don’t have to like it!

Tomorrow’s the last day of the season for hippotherapy; then the speech therapist will show us what to do with that damn Tech Talk….just not quite ready for it yet…maybe it’ll be better with wine.

Last weekend we went to Disney on Ice. I thought Maria (and Manolis) might enjoy it. Yea right. Maria was mildly interested for a short while, but got bored quick–although she was very good (as usual). It might have been too fast or too busy for her. I think it was because it wasn’t a very good story: the Incredibles go to Disneyland on vacation. The dad breaks all the rides because he’s trying to “save them” from the rapids or the train robbery, all part of the ride, but he doesn’t realize that. Then some bad guy comes to Disneyland to turn everyone into robots and captures Mickey and Minney, so the Incredibles go to a costume designer (who also happens to work there) and get new costumes so they can save the day. Maria & I thought it was going to be princesses. Oh well!

We went to see Julia again. She’s an energy healer who’s traveled all over the world learning different healing techniques. We saw her last summer and I liked her (she’s the one who said Maria can see angels; I have no doubt!). Maria took to her very quickly and within a couple minutes was totally wrapped in Julia’s arms. She said Maria’s been having some growing pains; her right ankle is a little sore (her AFOs were on loose, so that might be why); she has a bit of indigestion; her brain looks normal (I told her about the neurologist saying Maria doesn’t have as much white matter as she should, but Julia couldn’t tell either way); her hearing seems good, probably very sensitive, she’s not sure if Maria hears words or just vibrations; her optic cortex is a bit small; her energy felt pretty good, not stuck in very many places. She also says Maria is very happy, and that she and I have telepathic communication. None of that sounds wrong, but we really can’t prove any of it right (except the visual cortex). She worked a lot on Maria’s back. We were there for 90 minutes and although she told me $85 in an email, she only charged us $20 because she said it wasn’t “work”, Maria told her where to put her hands (which I saw her do). Hooey or not, any time we can spend 90 minutes with someone, only spend $20, feel good while we’re there, and feel good after we leave, must be good!

Oh yea, and George stopped by yesterday! He’s one of our guardian angels; he’s the one who read about Maria in the paper and collected a bunch of money from his church to bring us because the story touched him so much. He’s very sweet. Lost his wife a year or so ago, so he’s pretty lonely. They were married at least 50 years. Sure was nice to see him again!

We went to the pulmonologist this week for a follow-up to Maria’s recent asthma diagnosis. Last time we saw a nurse practitioner, but this time I wanted to see the doctor because although all is well now, as we know, Maria is a complicated girl and her pediatrician thought we should be followed by a doc. I told him she’d been doing great, clear breathing, fighting the Flovent so we stopped giving it to her a couple weeks ago. We stopped the “emergency” Albuterol inhaler at least a month ago. We’re still giving her the nose spray. I don’t think she has asthma. She did great during her last swallow study. He didn’t say much. I can’t figure out if he thinks we have it completely under control and I covered everything, so nothing to add, or if he’s not very good. We saw him almost 2 yrs ago when Maria was in the hospital being diagnosed with seizures. He scoped her lungs to see if she was aspirating (and, of course, there was no sign, not even microscopic). We liked him then. I think I still like him, I was just puzzled by the lack of pontificating and dire predictions.

He’s fine with not giving her meds that don’t appear to be necessary and agreed we should start them again if she seems to need it. He was surprised she’s not fighting the nose spray (we stopped that now too, I haven’t noticed any negative consequences). Come back in Oct or Nov. The upper respiratory colds/infections she gets in the fall/winter are the cause of the rough breathing, nothing else seems to be a trigger–not even Kijana! So, another “wasted” appointment–we love those!!

Maria was tired all week at school. All the animal watchin’ and cousin lovin’ was exhausting. She takes after her Auntie Rose in her recovery time. Four out of six of Uncle Craig’s kids showed up with most or all of their kids. Uncle Dick and all three of his kids showed up with Maria. All six of Uncle George’s kids showed up with most or all of their kids. Neither of the other two uncles or any of their kids were able to make it. All together, there were almost 50 people!!

It was great to see everyone. It’s been since Grandma’s 90th birthday 11 years ago that many of us saw each other, and the prior reunion several years before that when the rest of us crossed paths. I’d never met most of the cousins’ kids–and one of them is 18 now!! Crazy! We all get along great, so it’s a shame we don’t get to visit more often. Most everyone just loved Maria and she immediately loved them. I got lots of cute cuddly snuggly photos of all the love. It was fun to see how much the kids look like their parents, whether it’s our generation or the generation below. We’re thinking about Myrtle Beach for the next one, hopefully in 2 or 3 years. Uncle Dick will be 80 in 3 years… We’d much rather get together for a birthday than a funeral, ya know?

We are back from Omaha where we went for her Great-Uncle George’s 80th birthday. Maria got to meet lots of cousins and, of course, they all adored her. She was her usual sweet self, very cuddly and affectionate. There were 3-4 hair pulling incidents but we warned them beforehand so they were patient about it. No biting though!

One of the places we went was the Henry Doorly Zoo which is the best zoo I’ve ever been to. Maria had a terrific time watching all the animals. She was fascinated by the penguins, trying to track them as they swam – penguins are fast underwater. She also loved the jellyfish, the waterfalls in the jungle display, and the fish in the aquarium. The aquarium display is a glass tunnel so the fish were swimming all around us and over our heads. Maria loved watching them and got a big smile when a ray swam right over her face.

What was really cute was how much the animals loved her. A fruit bat landed on her fingers. A gorilla stared at her. The most amazing moment was the meerkats. There were about eight people already lined up watching them. The instant we came around the corner, every one of the meerkats turned to stare directly at Maria. Two of them scurried over and were trying to dig out of the cage to get to her! They ignored everybody else once the princess came along.

On another day we went to an exhibition on chocolate at the Durham Museum. Maria tasted some chili-infused chocolate that she really liked, although I think the spiciness got to her after a bit. Other than that it was mostly hanging out at George’s and chatting with the relatives.

She slept a lot on the trip, which is good. She got exhausted from all the stimulation but was very happy. On the day we went to the zoo she didn’t get a chance for a nap, but never got cranky like she usually does. Overall it was a great little vacation.

The other day I came home from work and was in the living room talking to Manolis. Maria was on the floor with Kijana, as usual. Suddenly, I heard a noise from Kijana. I looked down and saw Maria biting Kijana’s tail. Kijana was not happy, but was trying not to overreact. Naturally, I flew down to them, moved Kijana’s strong legs and sharp claws away from Maria’s sweet, tender face; then tried to simultaneously pry Maria’s jaws open while releasing her Herculean grip from Kijana’s tail. Eventually, we had success–a smiling baby, happy kitty, and relieved parents. Close call. Too close. I shudder to think… Thank goodness Kijana is so sweet and understanding. And a few seconds later, she was laying right next to Maria again, so no hard feelings.

We just got back from a wonderful birthday party/family reunion in Nebraska. Details coming soon…