Maria Rose

A vortex is a mass of concentrated energy that moves in a rotary or whirling motion. They originate from magnetic, spiritual, or sometimes unknown sources, and are considered by some to be gateways or portals to other realms, both spiritual and dimensional. Several vortexes exist in the world–Stonehenge and the Great Pyramid being two of them. Apparently there are 4 sites in and around Sedona. Some people think they have healing power. Since we live so close, we thought, “why not?”.

We visited the airport and Bell Rock vortexes. At the airport, there’s a short, but steep hike up a hill. Manolis had Maria in the backpack–in hindsight, I do believe it was quite dangerous (hindsight, hell, at the time it seemed very dangerous; in fact, once he slipped and Maria lost her glasses, which we didn’t notice for a few minutes…). The Bell Rock trail was much flatter, so we took Maria’s stroller, but it was bumpy for a stroller. It turned out to be 1.1 miles one way, which isn’t bad, but it was hotter than heck, we didn’t have much water, I didn’t reapply sunscreen to Maria, she didn’t seem to enjoy the bumps much, and finally, she pooped. Since I didn’t know how far it was, I didn’t bring diapers, so I sent Manolis back to the car, while we slowly kept walking. Finally, I said we had to stop. We were close, but I didn’t have a good feeling about being there. It was the strangest thing. We were standing in the shade of a tree trying to decide what to do, when a dust devil came up and whirled right by us and on down the road. Manolis said, is that the vortex (joking)? I said, yup I think so. Now we can go back.

It was beautiful up there, but it just didn’t seem smart to be taking Maria out in that heat and blaring sun for so long. Of course, I thought it was going to be a lot cooler than the 110 degrees in Phx, but I think it was at or near 100. I consider the trip to be recon; we can go check out the other 2 vortexes, see if I get a better feeling about them, then we can come back in the fall, when things are nicer (read: cooler) and we are more prepared.

All-in-all, I think Manolis had a pretty nice Father’s Day (except for his uptight wife, who only seemed to relax after a beer and fruit/veggie/cheese plate at a brewery…). Maria ended up faring pretty well. No seizures, no sunburn, slept good last night. I thought she’d be overtired, sunburned, and seizing. At least we tried it and we have a map for all the sights, for when we go back.

Maria had her semi-annual evaluation this morning.

The doctor was really impressed with how much progress Maria has made since the last one, which was right before we went to Shriners in November. She admitted that in past evaluations she sometimes had to struggle and fool herself (her words) to see much progress. She was happy to see so many examples of how much better Maria interacts with the world. I suspect that getting her seizures under control is a big part of why she has developed so much.

She also said Maria’s muscles were much looser and she thought that might have been the seizures as well. Maria was probably having many mini-seizures (dozens or even hundreds per day) that kept her muscles tight.

Maria’s scoliosis is getting more pronunced and the doctor said that her ribs are starting to move out of alignment as a result. At this point it’s nothing serious but it’s one more thing that could get worse. She said that scoliosis doesn’t get better, which surprised me because I had been assuming that we could reverse some of the damage.

And we continue to fight with the DDD to get the equipment that Maria needs to keep the scoliosis from getting worse.

She recommended sending Maria to a nutritionist, which we all agree is a good idea. Her swallowing and eating are still a problem and the concern is both the calories and the actual nutrients. It would likely be a matter of adding some powders to her milk so it would be easy to keep up on.

Her height is 36″ which baffles us. That is what it has been for months at least and maybe over a year and yet she is clearly longer. She is outgrowing her current stander, her high chair, and a few other things. We watched the doctor measure her twice and agree that she did it right, but she got 36″. Weird.

Later in the day we took her to a Jin Shin Jyutsu session, which was my first chance to observe it. Debbie, the practitioner, touches Maria very lightly at two points, say on her wrist and her back. The idea is to unblock the energy flow through the body - or something like that.

I’m both open minded and skeptical toward alternative therapies. Some, like the Qi Gong, definitely did Maria some good. I may not understand how it helped, but it clearly helped. Others, like the faith healer, didn’t seem to do anything.

Since she started the Jin Shin Jyutsu all of us (Manolis, Cathy, Sue and I) have noticed numerous examples of Maria acting more in tune with the world. It seems related to vision and hearing, although I’m not sure if it’s the sensory input or the cognitive interpretation of the input that has improved. It might be coincidence, but it sure seems to be linked to her therapy sessions.

Maria starts with a new speech therapist on Tuesday. Then Cathy, Rosanne and I are going to the Hydrocephalus Conference on Thursday and get back just in time for Maria’s 4th birthday!

I decided to take Maria to a movie on Sunday–Horton Hears a Who. She was a little tired before we left. She was amused by the big dark room (movie theater) and the long, dark hallway we walked through that has lights on the ceiling (cheesy cheap theater decor). When the commercials and movie trailers began, she was mildly interested. By the time the movie finally started, she was bored; not sure she even looked at the screen more than a time or two.

We were sitting 10-15 rows from the front; she got very squirmy and loud at one point, so we moved to the back row where her stroller was. Fortunately, it fit next to the chair in the back row. (I asked the guy I bought the tickets from if they had accessible seating, he said yes. I guess he didn’t know what I meant because there were no places for a stroller/wheelchair.) Sitting in her stoller calmed her down (maybe moving back too?), then 10-15 minutes before the movie ended, she was asleep.

Manolis suggested we take her with us to see Indiana Jones. I don’t think that will be such a good idea… I think we need a movie with music. But who knows, she might light all the loud action and adventure.

My life is complete. I found the perfect cupcake. Sprinkles. It’s originally from Beverly Hills, but one opened in Scottsdale recently. We stopped on our way back from Jin Shin Jyutsu and I got a dozen so I could try all the flavors. They are freaking expensive, but sooooo good. I’ve been on a cupcake quest for at least a year, and finally I’ve found the Holy Grail!

But I digress…. A year or so ago, the woman who makes Maria’s AFOs (ankle foot orthotics; we call them UFOs) recommended someone to us who does an energy healing technique called Jin Shin Jyutsu. I finally got around to calling her. She lives/works way the heck down in Gilbert (45-min drive with no traffic). We went Saturday, again today, and will go next Saturday. It has to do with clearing the blockages in the energy pathways and balancing pulses. Debbie, the practitioner, has an 18-yr old daughter with cerebral palsy, so she understands many of our challenges.

After the 1st session, we went to Starbucks and while I was getting coffee, Manolis noticed that Maria was looking around at people–just like the other kids do! He said for a while she looked like there wasn’t anything wrong with her. Coincidence? Who knows and who cares. She’s also seeming to communicate more (puts Andy’s hand to her eyes, indicating she wants her glasses on; put my hand to her diaper area this morning, indicating she wants her diaper changed). She slept a lot today and has been rather lethargic this week; getting over her lung issues or channelling energy? Who knows? We like Debbie, she teaches us new things every time that we can try on Maria and ourselves. We’ll try it for a while and see… Certainly can’t hurt!

(OMG-the pumpkin cupcake was almost as good as the chocolate coconut one I had earlier today. I can feel my butt getting bigger already…)

Although Maria’s last day of her first year of school was a few weeks ago, I haven’t blogged about it yet. Maria’s in a special needs preschool with 3- & 4-year olds. The older kids “graduated” at a little ceremony they had at school. They set up a bunch of chairs for the audience; the kids sat in chairs facing the audience. They sang some songs, which was both cute and hard. All the kids except Maria and one other little girl sang the entire alphabet, then counted up to 10 or so, and one or two others. The funniest one was a spider song, where they had a picture of a spider on the floor, then on their leg, lap, shoulder, face, head, then back down–very cute. The 4-year olds then got a graduation hat put on them and walked over a little bridge, stopping at the top to look at their parents for pictures, then down the other side to get a handshake and sit in a chair at the side. One little girl needed help, most of the other ones did ok. I can tell already that next year I’ll be a mess. Funny how emotional a silly little thing like this can be… One more year of preschool with the same teacher and aides, then she’ll be going to a different school (her home school) with a different teacher. I sure hope it’s a good situation, but many other things to fret about in the meantime.

Dad & Ida came to visit over Memorial Day weekend. The Monday before it hit 110 degrees, quite a bit above normal for this time of year. While they were here, it was down to the 60s or 70s in the morning and barely hit in the 80s, I think, during the day–they even had snow and rain on the drive over! It was quite pleasant for them, tho’ a little chilly for some of us locals. When they left, the temps started creeping back up again. Perfect timing for a visit!

As usual, we didn’t do much. Manolis cooked every night. We drove up to the outlet mall one day, to the liquor store/Babies R Us/somewhere else another day, ate at Chipotle once; other than that we just sat around.

Fortunately Manolis was home when they got here, because Andy & I were at the doc with Maria. As Andy mentioned, she almost landed in the hospital again, so it was a fairly rough weekend regarding Maria’s condition, but not too bad for a visit from the grandparents. Maria’s fascinated by her Grandpa. She constantly tries to grab his ears, face, head. Once she stuck her head in his arm pit for a good long time…. When Ida held her, Maria was mesmerized and just stared at her; kind of like what she does with Auntie Rose. I guess she’s trying to figure out who everyone is and where they fit in the family. It was a nice visit; too bad it’s such a long drive. They’re in the middle of trying to sell their house and move into a nice independent living place–quite stressful.

It’s been an interesting couple of weeks.

Maria developed some kind of respiratory thing, but this was different that ones she’s had before. It was bad at night and kept her parents awake, but during the day she was mostly fine. When it was bad she would wheeze and whine and do that “seal bark” cough that was so high-pitched sounded like a scream. When she slept I could see her struggling to breathe.

Cathy got her into the pediatrician the Friday before the long weekend, and it turned out to be a rough visit. 20+ minutes of Cathy holding Maria while the nurse tried to get her blood oxygen. Then 30+ minutes of Cathy holding Maria while I tried to give her a breathing treatment. Then 20+ minutes of Cathy and me holding Maria while the doctor tried to get a followup blood oxygen. By the end of it, Maria was a basket case. She was freaking out, her breathing was really weird, she was possibly seizuring, and so on. Needless to say, me and Cathy and the doctor were basket cases as well.

Her blood oxygen was around 91 and below 93 is when they put you in the hospital. The doctor said any other kid she would put in the hospital but she knows how close an eye we keep on Maria so agreed to let us take her home as long as we promised to head to the emergency room at the slightest hint of trouble.

The doctor had us give her breathing treatments every 2 hours (instead of the usual 4) and a round of antibiotics. Over the weekend we kept going back and forth about the emergency room but Maria got through.

She’s a little better but still wheezy. The doctor now has her on 5 days of steroids (prednisolone) and if that doesn’t clear it up we will go back in.

We have no idea what caused this. The symptoms are much like asthma, although the doctor pointed out you don’t call it “asthma” unless it happens over and over. For now it’s just reactive airway disorder and clinical pneumonia.

Maria hates the steroid and refused to take any of her medicine yesterday. When we have to fight with her to get the medicine in, there’s that much more of a chance of aspiration.

Meanwhile, we had a meeting with the insurance to evaluate Maria’s chance of walking, still trying to get the walker approved. There was a nurse from DDD and a representative from Cathy’s private insurance. They both seemed pretty supportive of our need but they aren’t the ones who make the decision. The PT was there and worked with Maria in the walker we want and we had lots of video of Maria walking with the PT that we gave them so they can show the medical director. We felt a bit more optimistic after their visit, but the decisions have been so nonsensical up to this point that we aren’t getting our hopes up.

In the meantime, Cathy’s been talking to her attorney about all this. She’s not an insurance lawyer but she is an advocate for special needs kids so wants to help if she can. If this latest attempt to the get this medically necessary equipment falls through we have to go to a fair hearing and we’re not sure what that involves.

June is going to be a very busy month. Lots of doctor visits and the Hydrocephalus Conference. It’s going to keep us old folks on our toes.

If I may rant for a few minutes… We received the denial of the appeal for the EasyStand sit-to-stand stander and Miniwalk walker today from the Division of Developmental Disabilities (DDD). It’s 12 pages, in part because they repeated my 6-page letter word-for-word. When they denied the equipment originally, they obtusely gave four reasons: 1. Need proof equipment works for her condition, haven’t received info from doctors or other providers showing this item helps. 2. Services must be medically necessary (that is, it must prevent disease, disability, or bad side effects or prevent the advancing of disease or prolong life). 3. Services must be cost effective, there is another item or service that costs less and works as well. 4. Basic care should be tried first. My letter addressed each point for each piece of equipment. I included letters and reports from doctors and therapists, as well as citing scientific studies.

I thought they’d stick to these 4 items, but no. They say “We have reviewed the [information] and have determined that the member appeal be denied. Our decision is based on [laws cited] that allow only medically necessary, cost effective and federally reimbursable services as covered services.” They go on to say that “it appears that there should have been two separate appeals for two separate pieces of equipment.”, even though I addressed each piece of equipment for each point in the appeal. And, my favorite part, “With regard to the Gait Trainer [Miniwalk Walker], the materials do not indicate that Maria has the potential to walk independently, confirmation of which must be received by the Division of Developmental Disabilities before a Gait Trainer can be provided.”

The only saving grace of this pile of crap is that they are recommending that an assessment be done to determine whether Maria has the potential to walk independently. I’m hoping that all they need to do is to meet Maria and they will see her potential. We’ve experienced time after time that when people read reports and test results about Maria, they don’t have much hope for her; but when they meet her they are always pleasantly surprised at how much potential she has and how well she’s doing.

The DDD’s letter also says the EasyStand sit-to-stand, in its seating position, has the same purpose as the stroller they bought us, and in its standing position, has the same purpose as the Miniwalk, so they’re not going to make a decision on that until they decide about the walker. Granted, the walker is more important, but tell me how a stander has the same purpose as a walker.

The other disturbing passage in the letter, when talking about medical necessity, says “The Chief Medical Officer reviewed the documentation submitted with the appeal and determined it does not appear the request is for rehab reasons (per the physical therapist’s note). As a result, we recommend denial of the appeal.” I don’t even know what that means, but Barb (PT) sure is going to be pissed.

I have 30 days to request a fair hearing, which I will do, although I have no idea what that entails–do I need a lawyer, for example? In the mean time, I’m going to call the DDD Health Care Services on Monday to get the ball rolling on this evaluation that they’ve recommended. Of course, as Barb said last week, if Maria’s feeling good during the assessment, she’ll do awesome; if not, then not. I’ll just have to video tape them in their next session (in 3 days) and hope Maria’s doing well, so I can show that to them. Of course, now that there’s only a few days left of school, Maria seems to be feeling a bit under the weather. She slept a whole lot of today and is coughing a bit.

And in the middle of all this, we’re filing a Petition to Remove Conditions on Residence for Manolis. He has permanent resident status (which is only good for 2 years to make sure we’re married for real and not just for a green card). It’s due 3 months before his resident card expires–although we filed the renewal of his work permit card 5 months ago (!), and haven’t received that yet, so who knows if it will be done in time. We finally got an appt with Immigration this Friday, so we’ll see if they can tell us anything about the work card. I don’t know if they’re massively backed up or if I screwed something up when filing the papers. Their instructions are so hard to follow–even for me, an English-speaking, semi-intelligent person. The challenges we’re given…..

Barb, the PT, is going to experiment with some “intensive dosing” this summer. We’ll do PT, focusing on walking, 4 days/week for 2 weeks, then take 2 weeks off. We’ll do that a few times and see if that helps because obviously walking with Barb 1 hour/week isn’t cutting it.

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.