Maria Rose

We’ve (I’ve) gotten a little lazy about the blog lately…

Just quick update before I forget. Maria got botox injections in her legs on Thursday. This should loosen up the muscles and give her more control. It should also slow down the deformation of her hips. She’ll have to repeat them every 3-6 months. They actually have to put her under full anesthesia because they are so painful – 12 injections at once!

Monday she starts VitalStim. That’s the procedure where they administer minor electric jolts to her throat muscles while she is drinking to strengthen the muscles and train them to operate correctly. Cathy was able to find someone to do this at home so we don’t have hours of driving. It’s 4 days a week for at least 5 weeks. We are suspending most of her other therapies in this time, though it’s late enough in the day that we could resume them depending on how Maria reacts.

VitalStim has something like a 96% success rate in improving swallowing. I think Maria’s swallow has been getting worse lately and I’m glad we are going to be doing this. If she can get her swallow under control maybe she’ll start eating more. This week she again weighed in at 30 pounds including shoes and coat.

Maria’s seizures are back. They had been pretty much gone for a while but now she’s regularly getting a half-dozen a day. Last weekend Cathy took her first day off in weeks, leaving Maria with Manolis. Maria of course had a massive cluster of seizures (around 35 in a couple of hours) so Manolis was freaking out. Cathy talked him through giving Maria her emergency medicine and it calmed things down.

So it’s been the usual fun stuff around here.

I’m going to be moving Maria’s site to another server tomorrow. It *should* be completely invisible to everyone but you know how that goes. If things get wonky, just wait and it should clear up in a few hours.

Poor Maria, she’s really been out of it lately… During most of her 2 wks off for winter break she was feeling fine, and then the weekend before school started, she had a fever and slept all weekend. She seemed fine Monday, so I took her to school and she slept through it. Monday night/Tuesday morning (the day we were supposed to fly to San Diego), she threw up for a few hours, so I kept her home from school and cancelled our trip. Slept and coughed all day, slept and coughed all night, had some loose bowels.

This morning her eyes looked puffy, but I figured it was from being horizontal so much. Then when Sue came and I saw Maria in the light, holy moly! Her eyes were very swollen, cheeks red and swollen, a couple scratches from rubbing her eyes so much, and nose packed with dried snot. (nice, huh?). She really looked bad, so I called the doc and took her in to another pediatrician in her doctor’s practice (her doc was booked, of course). He said it’s a stomach flu bug that’s going around, all we need to do is keep her hydrated with sports drinks and yogurt drinks, avoid milk. Try bananas and rice if she’ll eat.

Hmmmm. Sounded good (benign), but when I got home from work, her eyes looked to me like they had dark circles under them, especially her left eye, which is also much redder than the other one. It kinda seems like she might be getting another bout of chalazion. I put ointment in her eyes tonight, we’ll see how they look tomorrow. She slept all day, is drinking pretty well, not eating much,. As long as she’s drinking, I’m not so worried (although she weighed either 29 1/2 lb or 30 1/2 lb today with clothes, just like Andy said, same weight that she’s been for probably at least a year, so not eating for a couple days isn’t the best).

I’m so glad we cancelled our trip, it would have been awful for Maria to travel feeling like this. If she’s not significantly better by Friday, I’m going to call the pediatrician’s office again. Poor little thing!!

Maria had routine visits to the neurosurgeon and neurologist over the last few days.

The news wasn’t good although also wasn’t exactly surprising. In particular the neurologist explained some things that have probably always been true. Maria’s brain is underdeveloped. Her brain stem in particular is small and that is the connection between the brain and the rest of the body. At some point they added microcephaly to her list of diagnoses. Literally it means “small head” and small head implies small brain.

She is also missing parts of the white matter in the brain, which is common with hydrocephalus. The grey matter is the part of the brain that thinks; the white matter is what connects the grey matter and passes information among different sections of the brain. Lack of white matter causes chronic fevers, spasticity, loss of coordination, optic atrophy, seizures, and cognitive impairment – all things Maria has.

The good news is that Maria’s seizures have dwindled. She often goes 2-3 days without any and even on a “seizure day” she has no more than 4-5. She still can have bad days, and I believe she had quite a few while she was traveling. That’s expected because travel is stressful and can mess with your sleep cycle, both seizure triggers.

Because of this, we are weaning her completely off the Trileptal. We’ll keep an eye on her to make sure the seizures don’t increase but I don’t expect them to. It will be nice to have one less medicine to give her.

She still weighs around 30 pounds, the same she has for months – maybe even over a year. She’s definitely longer and her feet are smaller (her AFOs don’t fit quite as well) but she’s not picking up more weight. She’s gotten to be kind of a picky eater which is part of the problem.

She’s also gotten very resistant to taking her medicine. It’s quite a frustrating battle for all concerned.

She and Cathy were supposed to go to San Diego today to see an audiologist there but both of them have been sick so Cathy finally rescheduled the appointment. With all the traveling they’ve done over the last six weeks (Albuquerue, Salt Lake City, Oceanside, Las Vegas) they are both pretty out of whack. So they are going to take it easy for a few days and try to get better.

The week before Christmas I got sick. Maria & Manolis had the cold, now it was my turn. Sue was sick too, so I also had to take care of Maria. The weekend before Christmas, we drove to Oceanside to spend the holiday with Rosanne. Manolis spent several days painting their fence. Amelia was mildly interested in Maria this time–at least she wasn’t scared of her! We had nice dinners and a good visit, low-key Christmas.

We took off the day after Christmas; I wanted to see my friend, Karen, but she wasn’t available, so we just blindly headed up north using the GPS I got Manolis. Maria gets bored easy in the car now, but at least she sometimes falls asleep. I got her some homeopathic spray for her congestion, and it seems to have worked!! She’s breathing better than she has for a couple months.

We stayed in Santa Monica one night, went out on the famous Santa Monica Pier in the morning. It was freezing! Very windy, so Maria was freaking out so we were freaking out. Not a pleasant experience. Headed up to Santa Barbara, walked around the old town area. Very cute, but crowded, and still quite cold. Headed up to Santa Maria and stayed at the Santa Maria Inn, a nice historic inn suggested by Jill (the GPS).

Friday we drove across California to Vegas. Decided to abandon the idea of driving any farther north because Maria wasn’t having too much fun. Took us more than an hour to get the 2 blocks from the freeway to the Tropicana, it was so damned crowded in Vegas. Then after we checked in, it took us more than an hour to get into our room because the lock was messed up. A guy down the hall couldn’t get in either so we chatted until the security guy came. He (the other guest) has a 7-yr old son who doesn’t walk, has a feeding tube, I didn’t get too much info beyond that, but he was very helpful with Maria–told the security guard that Maria has a problem, so they’d better take care of us; he also “gave me permission” to change Maria’s poopy diaper in the hallway. Because of him, either the security guard or the maintenance engineer stayed with us the whole time, while Manolis unloaded the car, found a parking spot, went and got a hot pot to warm Maria’s food. Finally at 9:30pm we were in the room.

We hung out at the fashion mall Saturday, Manolis gambled a little bit, I walked around for an hour or so. Nothing too exciting. It was so busy (holiday weekend, near New Year’s eve). Just the few times I walked through the casino, the smoke triggered a relapse of my cold, only worse this time. We drove home Sunday, I missed work all week. Sue took care of Maria, who was healthy until Saturday. Now I don’t know if she can go to school tomorrow, and Tuesday we’re supposed to fly to San Diego for an audiology appointment. Happy Holidays!