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.

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.

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.

I think I mentioned that in the last week or two, a little blonde boy in Maria’s class shouted, “Maria’s here!!”, when we got to school. Of course Samantha is always happy to see Maria, petting her and hugging her, and Maria smiles in response–it’s so cute! But yesterday, when I dropped Maria off at school, it was the best yet. I rolled Maria through the gate and was signing her in, when a cute little girl in her class said, “Yea, Maria’s here!!” very excitedly; then she ran out to the playground and yelled, “Hey, Maria’s here!”, and Samantha, the little blonde boy, and about 4 or 5 other kids all came running over to Maria, surrounding her stroller, touching her and petting her. Maria got quite a kick out of it. I almost cried. It was probably about the sweetest, cutest thing I’ve ever seen. If only I’d had my camera. I’m glad Maria’s in school, at least she’s getting some socialization out of it, and experience with little people her size.

Today was Maria’s first hippotherapy at her new time, Friday morning at 9:30am. She did great! Sat up straight most of the session, Marcia said she was smiling a lot. In fact, I told Maria where we were going and she was smiling a lot in the car–I think she understood what I was saying. We only have a few more sessions before it’ll be too hot, but so far the weather’s been cooperating. When we got home, Maria slept for more than 4 hours so I got a lot of work done, and she had no problem getting to sleep tonight.

We were supposed to meet a new speech therapist, but when she was about 4 houses from us, she got a call from her fiance that the dog had gotten out of the yard, got hit by a car, and had to be put to sleep; so she was going to have to go home and tell her 9-yr old daughter. Poor thing, she was so upset. We’ll try again next week.

We’ve been wondering what the magic button is to make Maria tick and today we figured it out. It’s the Wiggles! We went to see them today and although Maria started out being a little tired and a little fussy, as the show went on, she really came alive!

She actually stood for most of the concert, which was about 2 hours long. She was very active, didn’t want to sit or lay down. She actually watched what was going on; Sue even saw her tracking some of the action. One time they turned off all the lights, then shined a light on the disco ball so it looked like stars were spinning around the room. Maria looked like she was in a magical kingdom–she was looking around and smiling. Sue & I have never seen her so excited, smiling, full of energy; and for so long. I tell you, it almost made me cry.

We were in the accessible seating, which was on the top floor, same level that you walk in on. We were looking right down onto the stage. We had our own little section, it felt like we were in private box seats. That might have been part of it, the nice location; not quite so crazy as being in the middle of the audience.

Sue got Maria some cotton candy and gave her quite a bit, so maybe she was just trippin on sugar, but whatever it was, Wow!

It’s really funny because Maria hardly even reacted at all to the Doodlebops; in fact she fell asleep right before intermission. Maybe she’s too old for them? Anyway, I went out and bought a Wiggles DVD after the concert (I was going to get her one at the concert, but holy moly, the line was long for merchandise purchases!). Amazing!

Maria had a nice time with Virginia this morning in music therapy. She was engaged, and oh, so affectionate! Good day at school. When I dropped her off today, a little blond boy yelled out, “Hey, Maria’s here! Miss Kelly [teacher], Maria’s here!” That’s the 2nd or 3rd time the kids in the playground have yelled that when I’m loading Maria up in her stroller. Does a mom good to hear it…

Sue said Maria ate a good lunch, and she ate a good dinner for me. Big spoonfuls of macaroni & cheese (you know, what the feeding therapists tell me not to feed her because it’s a mix of textures. Whatever!), lots of it, and no choking! As Andy mentioned, she’s not been eating well lately. She’s back down just under 30 lb., so it was great to see her eat 2 good meals in one day. Plus she does love her milk, so that’s always a given–so far. When she’s not eating, I load up her milk with half & half, pudding, yogurt, rice cereal, coconut milk–anything to boost the calories.

But the best part of the day was after I got home at 6pm and after she ate her good dinner, we went for a walk. I could tell she was so tired, so as soon as we got home, I got her jammies on and put her to bed. She was fussy and restless, so I went in to settle her down. She reached up with both arms and gave me a hug around my neck, without hair pulling, hugged me for a minute or two, then one arm dropped, and the other arm dropped–she fell asleep just like that! Even though work SUCKS lately, that one little hug made my bad day melt away and reminded me what really matters…

Last week I went to an Arizona Senate hearing on not enough therapists in Arizona. This week I’m looking for new occupational and speech therapists…

Today Maria’s home and school physical therapists met at school. The school PT still is strongly resisting changing Maria’s stander to prone. I’ve asked her to, the home PT asked her to, I told her a neurodevelopmental pediatrician suggested it, and she still doesn’t want to do it because she thinks it’s fine as is. (Lazy? stubborn? you decide)

We put Maria in the school’s Rifton walker and in the Miniwalk that Barb (home PT) had in her car. She did a LOT better in the Miniwalk (yes, that’s the one that the insurance company denied; I wrote a 6-page appeal letter in response). Home PT suggested nicely 3 or 4 times that school walker was too low for Maria. School PT said it depends on how Maria’s doing, usually it fits her fine. (lazy? stubborn? something else?).

I said the chair didn’t put her at a very good position to the table. Home PT said, hmmm looks like the arms can adjust down, and let’s put the back up straighter. School PT seemed like she didn’t even know the chair adjusted. (can you guess the adjectives I’d use now?)

As you may have guessed, our little get together was a bit awkward, a bit uncomfortable, certainly not a dialogue among colleagues trying to discuss ways to make things better for Maria. Too bad I can’t fire her… Instead, I copied the report from the neurodevelopmental pediatrician and I will highlight the part about changing the stander to prone. I even took pictures of our stander at home (same type as school stander) so she could see how it looks and where the settings are. I’m thinking of having a little chat with the teacher.

We’re looking for a new speech therapist because, as we’ve mentioned, our previous one is now meeting with other therapists instead of kids. We’re looking for a new occupational therapist (fine motor skills) because our current one is not meshing well with Maria. She constantly fights with Maria for the entire session, every session–keep your thumbs out of your mouth, don’t put the toys in your mouth (typical, expected, and encouraged behavior for a visually impaired toddler). It’s fairly obvious that Maria’s not as comfortable with her as with some others, like, say, the new horse therapist… It almost feels like torture to watch. We’ve been quite lucky with therapists, I hope our luck holds. I almost found a new OT, I know she would have said yes if she’d met Maria, but on the phone it’s easier to say no.

Yesterday Maria went to hippotherapy (physical therapy with a horse) for the first time (which is amazing considering we were waiting for her new state coordinator to send in the approval, and he actually did it with only 3 or 4 phone calls to him and his supervisor!). The therapist, Marcia, fell in love with Maria before we even got her out of the car. And before she got on the horse, the therapist said she was going to try and get Maria into a Friday 9am or 10am slot rather than the noon Wednesday slot that she’s got now. I tell you, Maria has magical powers…

Marcia worked with Maria for a little while on a padded table and asked us (Sue & I) some questions about her, then she put a waist belt and a helmet on Maria and put her on a cute little black shetland pony. I think her (his?) name is Blackberry?? They put a Boppy pillow around her front to lean on; one guy led the pony while the therapist stood on one side and a volunteer stood on Maria’s other side to keep her upright. The family has to stay outside the arena and not interact with the child (children often act up around the family). They walked around the arena several times; Maria was doing really well sitting up. I think she was on the horse for 20 minutes or so, which is a long time for the 1st time. All of a sudden, you could tell she was tired because she got a bit more floppy, so they came in.

They told me that the brains of people who don’t walk can wire themselves to learn how to walk just by riding on a horse, because the horse has the forward, up&down, and swivel movements of a person walking. After the ride, Marcia held onto Maria and Maria took about 20 steps–it was amazing!! She’s been doing really well lately with walking; she took those few steps with Andy to get baby Elmo, and she took several steps (6 in a row once) with Barb (home physical therapist) this week. I’m real excited about what this therapy could do for her; which is a good thing, since Marcia told us after we got there, that oh by the way, you have to pay $30 each time for horse rental that the insurance won’t pay. It’ll be worth it if it helps her.

The bad part is that I think the horse riding made Maria’s diaper rash worse, so I took her to the doc today and it turns out it’s a yeast infection (wish someone told me that a week or two ago!!), so he gave us a prescription for Nystatin cream, which is only 83 cents/tube. Good thing, since Maria grabbed it and squeezed out about 1/4 of it the 1st time I used it. It was actually pretty darn funny! I sure hope it helps because she looks really bad. I’d take a picture of it, but I’d be afraid of getting arrested for having kiddie porn.

Maria has been obsessed with chests lately. Everyone she comes in contact with, male or female, she pulls open their shirt at the neck and peers in, usually reaching in to feel around. It’s very cute.