Maria Rose

The big news with Maria is that the state has denied to appeal to pay for her walker and stander. Their reason is that they don’t believe she will ever walk independently.

Even if that were true, and none of us believe it is, that’s completely irrelevant. As her PT pointed out, does that mean they don’t pay for a cane if the person is unable to walk with a cane? The first issue is that she needs to do more weight bearing for the health of her hips and spine. The other benefit is that the ability to move around on her own in the walker will increase her cognitive development.

So we now get to have a hearing. We will certainly bring her PT as well as video evidence that Maria is showing interest in walking. The PT recently helped her walk back and forth over about a 30-foot stretch over a dozen times! We will also bring any other medical or therapeutic support we can to argue our case.

And every day that they jerk us around, Maria’s hips and spine get a little bit more deformed.

As someone who worked for health insurance for ten years, I generally side with the insurance companies. Most people have an utterly absurd idea of what medical insurance is then they get mad at the insurance for not living up to their fairy tale fantasies. However speaking as a medical insurance professional, this situation is just utter crap. This should have been a rubber stamp approval and they are dragging it out month after month.

Meanwhile, Sue has this thing in her ear and the doctors don’t know what it is. It’s some kind of fluid sac and they are utterly baffled by it but they are going to do some more tests then go in through her skull and cut it out. Sounds like fun. It also means she won’t be able to take care of Maria for at least a week.

This coming week is Maria’s last week of school. I think she’s going to miss it because she really seemed to love school, but it’s not long until it starts again in the fall.

Things have been pretty busy over the last couple of weeks. Cathy’s been traveling, Sue’s had some health problems, and Maria’s had a few issues too.

Maria had several Vitalstim treatments last week to get her in the best shape possible for her barium swallow on the 1st. Despite the treatments she still did quite poorly, aspirating several times during the test. Although they didn’t mention a feeding tube, they recommended that we give her honey-thick liquids only - no food. We are stubbornly continuing to give her food, but it’s still the mushy stuff. She has trouble with it and we have to feed her slowly but we still think it’s best. We go back to her regular feeding therapist this Thursday so we hope she has some good advice.

We closed out her current IEP this week and set up goals for next year’s. The meeting had her teacher and all her therapists so we could discuss progress and goals. Her teacher talked about how they were afraid to leave her alone for even an instant at the beginning of the school year but, as they’ve gotten to know here, they’ve become more confident and realized that Maria often makes the most progress when people back off and let her do it herself. That’s a lesson we are still learning after four years.

We talked about how Maria is becoming more communicative in her way. Cathy and I have notices how Maria lets us know when she’s in pain, even if we can’t always tell what hurts. In the past she might jump if something happened like getting a fold of skin caught in the belt buckle, but after that she’d just sit happily. Now she has long-term reactions to things and lets us know when she’s not happy.

The last day of school is coming up and it’s going to be a bit hard to go back to having her home all the time. The teacher tried to get her on the year-round school but it was decided that she’s not likely to lose her skills over the summer so she doesn’t qualify. They will see how she does in the fall. The teacher thinks (and I agree) that it will take Maria some time to get used to being back around so many kids again and that could be enough to qualify her for summer school next year.

She has a follow-up with her neurologist this week along with, as mentioned, her normal feeding therapist. She got a couple of blessings at a Greek Orthodox monastery yesterday, so we’re covering all the bases.

I took Maria to her hippotherapy Friday. Words just don’t do it justice. She behaves so differently on horseback than she does on the floor. She was sitting up better, moving her head, and generally more animated. She had been really sleepy that morning and I had to keep her from falling asleep before we left. Once that helmet went on, she got a huge grin and perked right up.

This Friday is probably the last session until fall. It’s already getting pretty darn hot out here so they’ll shut down until it gets cooler.

Later that afternoon we took her to get her AFOs adjusted. She doesn’t need new ones yet so just a few tweaks were enough for now.

Saturday ended up being busy as well with lots of family errands. She’s fairly nap-deprived at this point and lack of sleep is a big seizure trigger so she’s had many episodes over the last couple of days. Things should calm down for a bit so we hope she can get back to her old self.

In technical news, I updated the blog to version 2.5 today so if anything seems wonky let me know.

Finally I’ve added new pictures of Maria. Because it’s been so long (8 months!) I’ve divided them up into several albums:

• July 2007 has pictures of her 3rd birthday and her stay in the PEMU
• Aug-Oct 2007 shows her at school and Halloween
• Nov-Dec 2007 is all about her Christmas travels
• Jan-Feb 2008 shows her getting Vitalstim and having a Valentine’s Day party

Pictures of hippotherapy and her elephant ride will be in the next update which will be much sooner. I also have several videos I need to edit down before posting.

Cathy and I have been concerned that Maria’s swallowing has regressed in the last couple of weeks. The Vitalstim therapist agreed - she says Maria is doing worse than she was before getting any Vitalstim at all.

It’s probably because she was sick. Not only does the phlegm mess things up, but her throat tissues were probably swollen and that would have confused her swallow reflex.

So the swallow study that was supposed to happen tomorrow has been put off until May. We are going to take it easy on her and let her get used to swallowing simple foods rather than challenging her with more complex textures. She will get four more Vitalstim in the four days leading up to it and we hope that will lead to a better result.

Maria seemed to have fun at the Renaissance Festival. Since it was Easter, the place was less crowded and she didn’t seem to be bothered by all the activity.

I took her on an elephant ride since Cathy was too chicken to take her They also had camels and a llama but the elephant was the only one big enough for me to hold her in front of me. The ride was short, just a quick walk around the yard, and it was hard to tell what she thought about it or if she even noticed it.

We took her to some music performances there that she seemed to enjoy. There was one in particular called Tartanic (bagpipes and drums) that she just loved. I clapped her hands in time to the music and she had this huge grin while I was doing it. I was annoyed that out of their 30 minute show they spent 20 minutes (no joke) hawking their merchandise rather than playing music. However their website says this was their farewell performance so I supposed I understand. It’s still disappointing that they didn’t play more, especially because Maria was really into it.

There wasn’t any food that she could eat. I tried giving her some Italian ice (which would upset her feeding therapist since it’s unthickened liquid) and Cathy gave her a couple bites of fish, but mostly she just ate what we brought for her (lobster pâté no less). Someday she can gnaw on her own turkey leg, but not yet.

She also enjoyed rolling around in the grass, something she doesn’t get much of a chance to do in Phoenix. It was very windy at times and the wind always freaks her out but she got used to it after a while.

I’m sure she was exhausted by the time we got home eight hours later since she had only a 15-minute nap the whole day. She may have gotten a bit too much sun even though we slathered on the sunscreen twice.

This week, her regular PT and the school PT are going to meet to discuss Maria’s therapies. Maria has two more Vitalstim treatments Tuesday and Wednesday, then another barium swallow on Thursday. We aren’t expecting good results from that but we are always willing to be pleasantly surprised.

I know we haven’t updated pictures in a LONG time but I have a ton that I need to make one more pass through before posting them later this week.

Maria’s yeast infection was noticeably better between when I put her medicine on at noon and when I put it on at 8 pm, so that’s encouraging. It looks really painful.

All of this chest congestion and yeast infection stuff is affecting her in other ways. She’s not using her vision as well as before and spends a lot of time with her eyes rolled up in her head. She also went from having 1-2 seizures a week to 1-2 per day. We are hoping that both will clear up as she starts feeling better.

Tomorrow we are going to the Renaissance Festival. Cathy and I went three years ago and I can’t remember if we had Maria. I would swear it was just the two of us and we left Maria with Joe & Ann. However I have a memory of this one character, Twig the Fairy, playing her double flute for Maria. I think Maria will enjoy it, although she’s going to get overwhelmed so we’ll have to give her some breaks.

Cathy was gone all week at a class and Maria was definitely not happy about it. When I had her Thursday, she spent the whole day in her double-fisted-thumb-suck mode. Cathy got home late Thursday (actually very early Friday) and Maria was very happy to see her and is all smiles now. It’s great when we see such clear signs that she knows what’s going on around her.

We got the report from the audiologist in San Diego and I noted a couple of things Cathy didn’t mention in her other post. They “strongly” disagreed with the conclusions that the audiologists in Phoenix had reached. They also said her hearing loss is in the mild-moderate range rather than the severe-profound, there is no neuropathy, hearing aids and a cochlear implant would be no help, and her hearing profile seems typical for hydrocephalus.

It’s all fairly encouraging. We are now trying to find a speech therapist for Maria but everyone is on the east side, which is a common story for everything in Phoenix. We’d prefer finding someone who will make home visits or who is at least close since the alternative is three hours per session - an hour drive over, an hour in session, and an hour drive back.

Maria’s chest stuff is still there but not as bad as before. It’s just that residual phlegm that hangs on after a cold. She took her last dose of antibiotic today and we are glad. She’s had diarrhea from that and as a result REALLY terrible diaper rash. That should all clear up now.

Cathy’s still trying to get the hippotherapy approved and the clock is ticking. Because they do it outside, they stop in May and don’t resume until November. We’d like to get a few sessions in before summer but it’s mired in the usual bureaucracy.

Next week Maria has spring break (no school) and no major appointments. The week after she has her last two Vitalstim sessions then her next swallow study. Things should be quiet for a while (knock wood).

The doctor finally called Friday afternoon (or maybe Cathy called him) and said it’s not pneumonia. We are continuing the breathing treatments and antibiotics and she seems to be doing better.

Friday was her last day with her speech therapist. He has to move into an administrative position because of this new state program which is going to offer more services…by taking people out of service to sit on committees. Typical government “huh?” planning.

Anyhow, we aren’t completely devastated by this. He was a really nice guy and we liked him, but he just wasn’t effective with Maria. I think he works better with kids who can give him some back and forth. He’s probably great with older kids, but I think Maria was too much for him. He of course absolutely adored Maria - to the point it was borderline creepy

We hope to find a speech therapist who has experience with hearing impaired kids, which he agreed was a great idea. However there is a huge shortage of speech therapists in Phoenix - even more so now that some of them have to sit on silly committees.

Maria did something pretty exciting today. I had her on the floor and she wanted to stand. I helped her to her feet and she started to take a step forward. She took three very deliberate steps (I was supporting her of course) and stretched out her arms toward the TV. I wondered what she wanted there since she hasn’t ever shown much interest in TV, but then she abruptly squatted down and picked up her Elmo doll which was in front of the TV! I really think she deliberately went over to get it.

Maria isn’t feeling well this week. She got a bad cough, bad enough that Cathy called the nurse line Wednesday. They said to give her breathing treatments every four hours and if Maria hadn’t improved by morning to call the doctor.

The breathing treatments helped a bit but not enough. Plus since the albuterol is a stimulant, Maria got very wired and shaky. She didn’t sleep at all Wednesday night. Cathy took her to the doctor on Thursday. He listened to her chest for about a second and said it was bad. He wanted a blood test and chest x-rays. As usual, the idiot nurse tortured Maria for about 20 minutes trying to get blood out of her while Maria struggled and struggled. After that, Cathy took her for a chest x-ray. That was tough because they were not set up for a kid who can’t sit up on her own.

The concern in all this is pneumonia, particularly aspiration pneumonia, which would require hospitalization. They took the x-rays and everyone was concerned over how Maria was panting for breath and looked generally awful. Cathy assumed that they would take the x-ray to the radiologist immediately. Nope. They sent her home. She waited and waited and finally called - the doctor of course had gone home for the day but might get around to looking at it the next day (today). It’s 10 am now and still no call. I guess it’s good that Maria hasn’t suffocated in her own phlegm yet. We still don’t know if Maria is going to spend the weekend in the hospital or not.

In other news, we may have finally found an easy way to give medicine to a toddler. Cathy found something called ReliaDose. It’s a bottle with a syringe imbedded in it so we can trickle in the medicine as she drinks. She hasn’t fought it or choked on the medicine once so far.

The only other event this week is that I’ve removed the ability to add comments to Maria’s pictures. There were only a handful of real comments anyhow…but there were also more than 17,000 spam comments. It’s ridiculous that I hadn’t noticed sooner, but that shows how seldom we look. If people really want to comment, they can do so here at the blog which has spam protection.