Maria Rose

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…