Maria Rose

I finally got a chance to make sense of my notes from the conference.

There was a lot of talk about ETV at this conference. At this point ETV has about the same reliability as a shunt but is more appropriate for certain patients. For example ETV isn’t effective on babies because you need pressure in the cerebrospinal fluid to keep the hole open, but babies and their soft skulls have lower pressure than older kids or adults. ETV is more risky up front but has fewer problems in the long run than a shunt.

They talked about different kinds of shunts. Basically all the manufacturers are about the same. They each have their little gee-whiz features but in the end show the same rate of success and the same rate of malfunction. Programmable shunts, like Maria’s, allow doctors to change the flow rate but realistically they don’t have any need to. It just gives one more thing to break down. However in Maria’s case a programmable was appropriate because her ventricles were very large. They had to drain slowly to give her brain’s structure time to adjust to the changing pressure, then increased flow as pressure approached a normal level.

There is a ton of research just being done or right on the brink of being done. They are looking at new ways to understand what causes hydrocephalus, what effect it has on the brain, and how they can treat it. The shunt was invented only about 55 years ago. Before that they couldn’t do much to treat it. They’ve made strides as they understand it better and there is likely to be a lot of change over the next few decades.

The last night of the conference they had a big party with a talent show. The keynote speaker, Sherman Alexie was a guy whose mother had been told to abort the pregnancy because he would be born dead or a vegetable (his mother’s reply, “What kind of vegetable?”). Even after birth they said he would die or be severely brain damaged. He is now a college graduate, a successful author, screenwriter and standup comic, and has won numerous awards.

I heard five other women say that their OBs had told them to abort their pregnancies for the same reason. Apparently obstetricians know absolutely nothing about neonatal disorders.

After the conference we took our free gondola ride to the top of the mountain and hiked around. We went into Salt Lake to drop Rosanne at the airport then Cathy and I went to a planetarium to kill time before our flight. All in all pretty fun and in hindsight we could have taken Maria after all. At any given time usually there was one of us free to take her and she certainly would have been the cutest little girl in the place as always.

Our little four year old has been named as the complainant in a legal action against the Arizona Department of Economic Security.

This is the latest in our long series of efforts to get Maria the walker and stander that she needs. We go before a judge and argue our case and DDD does the same. In other words it’s the big bad government agency/insurance company against the adorable little disabled girl. We are hoping that DDD will pull their head out and rule in our favor before the court date (July 28). The rules say we don’t technically need a lawyer but after reading the rules I suspect we will need one.

Because the universe loves to complicate things, this is the same date as Sue’s surgery for her weird ear/brain/whatever thing that continues to baffle the doctors.

I’m going to post more about the Hydrocephalus Conference but every time I sit down to do it (there’s a lot of information to organize) something comes up. I’ll do it probably over the weekend.

Maria is 4 years old now!! As you know, we were at the Hydrocephalus Conference all weekend, so her first birthday surprise was that Mommy’s home!! We went to the IMAX in Tempe and saw the 3D show on Whales & Dolphins. It was pretty cool. Maria was engrossed for about half of it. I tried to put the 3D glasses on her, but I think it was too overwhelming. It is pretty scary when a gray whale is coming out of the screen at you…but awesome at the same time. I was impressed at how interested she was.

She also seemed to like the mall. She was looking up at the tall ceilings, and down at the tile, and she even frequently sat up and forward, looking around–you know, like other kids–rather than her usual thumb-sucking fetal position.

We ate at the Rainforest Cafe. They had a couple “rainstorms”. The first one went by unnoticed, but she reacted to the 2nd one. They dim the lights, then you hear thunder and see flashes of lightning. She jumped when she heard the thunder. Pretty cool!!

We got home at 6 or so. She ate her chocolate cupcake before dinner (gasp!), so I could be sure to get some pictures. I think I took 50-60 photos, we’ll see if any of them turned out. She can be a challenge to get a good photo of at times. She really enjoyed her cupcake! First birthday where she ate it all by herself, I think (well, the floor did get its fare share..).

I enjoyed the Hydrocephalus Conference. Park City is a beautiful setting! The hotel was nice. I reconnected with a couple people from last time and met a few new ones. I was disappointed that they split the moms of 3-5 yr olds with hydrocephalus into 2 groups. Our group was fairly small and I don’t think a few more people would have been bad. Like last time, they gave me a few new things to worry about; but I was amazed and encouraged by the emerging research, increase in funding by National Institutes of Health, start of research database/network thing (HCRN, I think), etc. Next time should be even better! We’re really hoping to bring Maria to the next one. Boston or Cleveland are the locations I heard tossed around. In hindsight, the thing I wish I’d gotten out of it was tips, tools, and techniques for dealing with our challenges–like vision and hearing issues, walking, getting equipment from the state, swallowing and feeding, what type of shoes fit over the AFOs that look halfway decent. That type of thing. Maybe I’ll suggest it… It’s good to hear others’ stories, but I’d also like to walk away with some practical things to try.

4 years old! Can you believe it??

Rosanne, Cathy and I are here in Park City at the Hydrocephalus Conference. I had thought today was just registration but they had a session on cognitive and scholastic performance of kids with hydrocephalus so we had to go to that.

A study compared kids with shunted hydrocephalus to kids without hydrocephalus, often their siblings to minimize the number of variables. These were high-functioning hydrocephalics, meaning they were on the same level as their age group in school.

It showed that through middle school the hydrocephalus kids perform as well as their peers in school but average about 15 points lower in IQ. When the look at the individual cognitive tests they see that kids with hydrocephalus have specific weaknesses, specifically verbal memory (remembering what people say to them) and executive function (planning and organization). However they do as well as their peers in visual memory (remembering what they see). So, for example, they have trouble remembering a class lecture unless they take notes and review the notes later.

As they get older, they are expected to be more independent (executive actions) and more of their education is lecture only (verbal memory) so they start to fall behind. They can still do well in high school and college but require particular strategies to succeed. The doctor gave an example of a woman with hydrocephalus who had a PhD yet did poorly on IQ tests.

They looked at many of the conditions that occur alongside hydrocephlus such as seizures and prematurity and found that they weren’t skewing the outcome. So it is something to do with either hydrocephalus itself or the shunt procedure.

They did another study that compared people with shunts to people with ETV. A shunt is a physical tube and valve and has complications like any medical device. When doctors perform ETV (Endoscopic Third Ventriculostomy) they cut a little hole in the brain so the fluid can drain out in a more natural fashion. Each procedure has plusses and minusses although my guess is that ETV will eventually become the standard treatment once they perfect it.

The study found that there was a difference between the patients with ETV and those with shunts. In most areas the ETV people had higher function although in some areas (I can’t remember which) the shunt people did better. This was a very limited study - they were able to find only 6 ETV people to participate - so they aren’t drawing any strong conclusions to it.

I don’t know if I’ll do daily updates while we are here. It just depends on how busy we get.

As for Maria herself, she has been doing great lately. She’s growing more interactive and aware. Her therapists have noticed it and are very excited about it. I don’t know if it’s the Jin Shin Jyutsu but it seems to have started about the time the treatment did.

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.