Maria Rose

At one of Maria’s recent appointments they weighed her and she’s up to 40 pounds – we aren’t sure when that happened. She’s started having seizures over the last couple of days so we think her medication needs to be adjusted to her new body weight. I had to give her the Clonazepam emergency medicine today for the first time in months.

Another problem we’ve noticed is she’s not fitting in her stander very well. I measured her and, although it’s hard to get a good height reading, it looks like she’s about 41″ tall. The stander is only good for kids up to 40″. Since the state fought us so much the last time we are reluctant to go down that road again. Since this one is still in great shape, other than the bite marks, Cathy is thinking about calling Shriners to see if we could swap this one (which they paid for anyhow) for a bigger one.

Life is never boring here.

As we may have mentioned, one of Maria’s therapists is convinced Maria has Rett Syndrome, a neurological condition marked by repetitive movements like hand wringing. I read about it and instantly could see Maria doesn’t fit the profile at all. The response of course is it could be an atypical case. However both the neurosurgeon and the neurodevelopmental pediatrician say hydrocephalus and Rett Syndrome are mutually exclusive. The neurological profiles are incompatible and you simply can’t have both. Since we know Maria has hydrocephalus, that means no Rett Syndrome.

Maria’s breathing has been a little off. The school nurse has reported her blood oxygen has been now and then and they’ve given her breathing treatments. We are giving her breathing treatments at home occasionally and we might take her back to pulmonologist. Because we need another complication.

In that vein, Sue has another blockage so is going to have to get a second stent. Since Manolis is here this time plus Maria’s in school, it will be a lot easier to cover her shifts. We are hoping she is back to work before Manolis leaves this summer. Plus Cathy has two major surgical procedures coming up so things will be interesting for a while.

Maria is already making huge progress on the bike. I took her out a week ago and she enjoyed it and sat up straight but didn’t do much pedaling. I took her out yesterday and she did much better. She pedaled several times from a dead stop with only a little encouragement. When I’d stop pushing, she’d pedal 4-5 cycles before stopping and would have done more but I had to stop her from going off the curb a couple of times. All her PTs (home, school, hippotherapy) have reported she is standing and walking better.

What’s most important is Maria absolutely loves the bike. She’s anxious to get on it when she gets home from school and doesn’t want to stop when we come back home even if she’s exhausted. We have to be careful not to push her to hard since it’s hard for us to judge when she’s tired.

The local rep for the manufacturer is coming out to tweak on the bike. It pulls to the right and the pedals seem to need a little adjustment. Our big concern is there’s a bolt sticking out she cut herself on and the rep said that shouldn’t be possible so he’s going to take a look.

Maria’s been sick on and off this week. She’s getting respiratory problems again and is back on an antibiotic and a steroid for a few days. Cathy took her to the doctor and they had the asthma discussion again. He isn’t her regular pediatrician and he was insistent that she has asthma and should be getting a puff of the inhaler every day. We don’t agree with the asthma diagnosis and even the pulmonologist was unsure – the line between asthma (which is chronic) and reactive airway disorder (which is occasional) is a point of contention even among pulmonologists.

Cathy’s talked it over with the school nurse and Maria gets the same care at school she’d get at home, so as long as she’s not contagious Cathy tries to send her to school every day. She missed one day this week but we hope that will be it for a while.

Maria had her annual neurosurgery appt. He was impressed with her progress and strength and dexterity of her hands. Her adductors are still tight as are her hamstrings, but she’s not getting worse. He said we need to go back to the orthopedic surgeon soon (he got a report from the ortho, but we didn’t, that bugs me when that happens). And he recommended that we go see the new physiatrist, which is a rehabilitation physician who treat the whole person, lead a team of medical professionals, provide non-surgical treatments, restore maximum function, is an expert in diagnosing and treating pain. Their goal is to decrease pain and enhance performance without surgery. This is according to the American Academy of Physical Medicine and Rehabilitation.

I mentioned this to another medical professional, who said another person similar to Maria was also referred to this physiatrist and he was kind of an ass. Told them their AFOs were the wrong kind, what they’d been doing was wrong, etc. But as long as I know this going in, perhaps it won’t be as bad? We have dropped doctors and therapists because they’re too ornery, but we’re willing to give it a shot.

He also mentioned that we may want to consider a baclofen pump at some point for Maria’s stiffness. It’s something implanted in her skin that puts drugs in her spinal fluid – nice, huh? It has troublesome side effects, including floppiness (not his words, I forget how he put it) in the trunk — just what she does not need. www.drugs.com says baclofen can cause side effects that can impair your thinking or reactions (among other things). I’m not too keen on all that. I think Maria’s bike will do more for her than a pump continuously putting drugs in her body.

The neurosurgeon also said her MRI looks good still and that it’s not possible to know how much the shunt is draining and how much Maria’s brain is draining on its own. So we’ll just leave well enough alone and tackle that problem if it arises. Since she’s growing so much, he wants an xray series (where they xray the entire shunt) to see if the tubing is long enough still. So, all-in-all, I guess the appointment was pretty good.

Maria has ridden her bike 3 or 4 times, and seems to like it every time! She sits up straight, doesn’t seem to get tired, we take her for longer bike rides each time. We’ve all got faith that this bike is the thing that will help her the most!

Bella’s doing well (our new kitten). She’s very sweet and loves Maria and Maria loves her. Maria has grabbed her tail a couple times and Bella only reacted the 1st time. We’re still very careful and watch them every minute, but fortunately they do seem like fast friends!! (and Kijana, our other cat, is finally getting used to her).

Tomorrow Maria’s going back to school, after being out for about 2 weeks (sick one week and in NM last week–it was freezing there, I went for work and Maria and Manolis went for fun. we got a few small visits with Grandpa and Grandma, which was nice). Her breathing, for some reason, hasn’t been good today. We used her inhaler this evening for the 1st time in months. I’m not sure what’s going on, but it doesn’t seem like it’s because of aspiration, it seems deeper in her lungs than that. I’ll send her teachers an email and they do a great job of keeping their eye on her and calling me if they have any concerns.

Maria’s bike was supposed to be delivered Tuesday, but with weather delays, it didn’t arrive until yesterday. It’s beautiful!! Nice purple color with lime green decals, huge white cat horn (hmmmm), and that new car smell — really! I think it’s the seat. Manolis put it together by himself (the mama wasn’t feeling well and was too grumpy to assist), Uncle Andy’s going to perform a quality control inspection, and I’m sure she’ll go out for a spin after school today. Of course I’m going to miss it because I’m going out to dinner with my girlfriends (for the first time in many, many moons).

Andy updated the software (or some damn thing) for the blog, so hopefully it’ll be easier to add photos. If not, I’ll just post some pictures to my Facebook page….because I’m so hip…

We got a new kitten today! Her name is Bella (she was named Gizmo, but that didn’t fit). She’s tiny, black, long-haired, and very sweet. She was born with micropthalmia (tiny eyes), so she can’t see very well. Something that would discourage others from adopting her made it clear to me that we HAD to have her. Kijana (our other cat) isn’t so sure about her. Maria seems mildly amused with her. We have to watch Maria and Bella together because Maria could really hurt Bella (and vice-versa, I’m sure).

Where does the wine come in? I was talking to my friend, Monica, on the phone, put Maria in her stander, and put her next to the counter. I had a glass of wine on the counter and Maria grabbed it. I was waiting for the crash of breaking glass, but all there was was red wine everywhere–all over the floor, Maria’s tan pants, Maria’s light-colored shirt. And there was the glass of wine, still in her hand, going toward her mouth….. I was impressed that she was holding the glass so well and that she didn’t drop it!

Now that Maria’s bike is paid for (THANKS to everyone who donated!!), they’re building it and we should be getting it the 1st week of February. Can’t wait!!

Cathy just put the last payment down on the bike so it should be headed our way soonish. Thanks again to all the people who contributed.

Maria’s definitely more interested in mobility lately. When I had her Sunday she went about 30 feet in the walker without any help at all. I envisioned actual walking but it’s not exactly that. She hangs there, propelling her self inch by inch with the toes of one foot as the other foot drags. It’s not fast or elegant but it’s purposeful and steady which is what matters. I know she’s going to love the bike.

Here is an email I got today from Sara, one of Maria’s teachers:

We are all so excited today here at school!!!!

Maria walked in her walker from Cindy’s room. Down the hall about 50 feet … then back and into my room. She then walked across my room too.

We provided direction but she did all the steps on her own!!!!!

Go Maria!!!!!!!!!!!!

OMG –how come she doesn’t do that for us at home?! Doesn’t matter, as long as she’s doing it somewhere! Like Sara said–Go Maria!!!!

I don’t know what’s gotten into Maria, but she is feisty this new year!! There was the bed incident, then today in occupational therapy, she was sitting on a bolster like you’d sit on a horse with Chris, and she started pedaling her legs–one right after the other! And then she struggled and brought one leg over, like you’d dismount a horse, because she wanted to get down.

We put her on the bike (like the one we’re going to get for her) and went for a walk and two different times she pedaled it by herself for several pedals! Both times the (lack of) steering was what stopped her (once she almost went off the sidewalk, the other time almost into a post). Holy moly!! I think we’re going to see great things from Maria this year!

One more sign of good things to come in the coming year–when Maria & I were coming home from getting Sprinkles cupcakes last week in a huge rainstorm, we drove right through the end of a rainbow! It was the darndest thing I’ve ever seen! So here’s the secret to getting the pot of gold–drive so fast that the rainbow and its little leprechans can’t hide fast enough.

Maria decided to bring in the new year with a bang. Apparently, at about 1 or 1:30am, Manolis heard a noise and went to her room. He pushed on the door and felt resistance, so he thought it was me playing a trick on him. He pushed harder and discovered that it was Maria laying on the floor behind the door!!! She got out of her bed through the little opening at the foot of the bed between the rail and the foot board, and rolled over to the door. He said she was cold. (it was cold in here last night, well relatively cold) OMG! I don’t know if it’s wonderful or awful. It’s both really.

So here’s to a new year full of miracles and magic for Maria (and to her extended village)!