Archive for October, 2007

Halloween & Equipment

Wednesday, October 31st, 2007

Yesterday I went to Maria’s school for her 1st Halloween party! It was very cute, one of the aids held a boom box playing Monster Mash real loud while the 2 preschool classes paraded through the school trick or treating. Of course, Maria was the cutest one by far. I’m glad I went, even though (especially because?) work has been crazy busy lately.

Tonight I dressed Maria up again in her cute outfit (kind of a hippie witch) and we walked around the neighborhood. (Just tried to download a photo and it didn’t work, maybe Andy can do it.) I decided not to trick or treat because we don’t need more candy. It was beautiful out and many of the neighbors were sitting outside to hand out candy. Some seemed to think it was strange that we were only walking, not trick or treating.

The other thing that happened yesterday was a woman came over to show us a sitter/stander. It seemed pretty good, Maria sat real well in it; if you push here and there, she can go from sitting to standing. I like how she stands in it better than her current stander. Then this woman happened to mention that she had a walker in the car, so we asked her to get it and it was awesome! It’s called a Miniwalk, made in Norway(?). It’s not very supportive, and at first I thought it was too minimalist, but it turned out to be pretty good. The Norweigans believe if you support the child just a bit, then they’ll work harder and build their muscles. It sure worked with Maria! She seemed to love it and even took some steps in the short time she was in it! If you told me 3 or 4 years ago that I’d be excited to get my child a walker I wouldn’t have believed it, but now I can’t wait until we get one. Barb, the physical therapist, is going to write a letter of medical necessity for these 2 pieces of equipment and we’ll hopefully have them in a couple months or so.

Her first parent-teacher conference

Saturday, October 20th, 2007

Cathy and Manolis had their first parent-teacher conference. Maria had a half-dozen therapeutic reports that showed anywhere from 5-50% progress toward her goals. Of course everyone loves her, adults and kids alike. There is one girl in particular who calls Maria her “best friend” and Cathy is thinking of arranging a play date. The aide was saying that the kids love Maria because she “giggles all day”. We’re not sure what they are calling giggling since we’ve never seen that.

Maria still has her chest cold and has been sleeping a lot. She’s going up to the full dose of Depakene this weekend but has been having a lot of episodes recently. It still is fewer that before the medication but more than we like to see. Since stress is a seizure trigger it might just be something she goes through when having bad days.

We continue to research the cochlear implant and just can’t decide if it’s the right decision. The problem is that, although it has a good success rate with auditory neuropathy, it sometimes just doesn’t work. It depends on what part of the auditory nervous system is affected and there is no way to test that. It’s just a matter of doing it and crossing your fingers. The big problem is the whole language acquisition thing. If Maria was showing any real interest in spoken language it wouldn’t be as important, but she just doesn’t even seem to acknowledge it. Other than occasional use of the “more” ASL sign and waving goodbye, communication is just reaching and gazing.

Maria’s VitalStim has been put off until at least January or February because they are so far behind. Cathy was thinking of requesting that it be postponed until summer so it won’t interfere with school. Most of the kids on the waiting list are under three and don’t have that problem so I’d think that would be fine. This is also good because it means we can travel for Thanksgiving.

New neurologist

Thursday, October 11th, 2007

We saw the new neurologist and like him better than the last one. He did stick up for the other doctor of course but said he would be willing to take over Maria’s care. Apparently he only sees seizure patients and it could be good to have a specialist on our team.

His advice was to stay the course: continue the Depakene until we reach the median dose then we’ll talk about taking her off the Trileptal. The Depakene seems to be helping despite an odd lapse recently. For a few days she had many episodes, then it slacked off again. Overall though she’s down to just a few a day. The neurologist said that Maria is already showing that she will be a challenging patient for seizure control and that we may never get them down to zero, but we’ll get them as low as we can.

Today Maria was supposed to have a barium swallow but woke up with chest congestion from a cold. Cathy called and they said we’d have to reschedule it for October 7. So instead of missing school for the lab test, she missed because she was sick.

Daddy’s Home!!

Sunday, October 7th, 2007

Manolis got home a couple nights ago. Of course the plane was several hours late, but we were “only” at the airport for about 2 hours. Maria was happy to see him, but tired and overwhelmed. The next day, however, she was very smiley! She smiles now when we kiss her, so you can imagine how much she smiles, inviting more kisses–it’s a vicious cycle…

Maria hasn’t been sleeping well the past week or so, certainly not since her daddy’s been home. She was doing very well with her “episodes” for several days, but now for the last 4 or 5 days, they’ve been relentless. It’s a bit overwhelming to Manolis, so I keep reminding him that I’ve been dealing with this for 5 months now. I’ve been having him give her her medicine. We both agree that he doesn’t have enough patience to be a mom.

I went to a concert of a Tibetan bowl sound healer last night. Diane Mandle (www.soundenergyhealing.com). She lives in Encinitas, not far from Rosie. She does private healing sessions. I really enjoyed the concert–amazing, beautiful sounds come out of those ancient metal bowls and gongs. Not sure about a healing session, tho’; for one thing, they’re $100, and I didn’t much like her when we talked to her afterwards. She plays the bowls to tune your heart or breath or some body function to ohm, which is the perfect frequency for the body to heal itself. Real or bs? Who knows. Who cares. Interesting either way. I’m going to order one of her CDs; it’s supposed to help you sleep (wish we’d had it last night), and helps to open your creativity when you’re working on something that needs creativity.

Manolis has been out trimming the bushes and trees, now he’s painting the spots in the kitchen that the remodelers messed up; we bought paint for our room–now it’s going to be tan-ish instead of robin’s egg blue. The kitchen used to be sage green and now it’s also tan-ish. Keeps him busy, doesn’t matter to me either way, so it’s a win-win. He was trying to fix the outside faucet that’s been leaking, the shut-off valve to the house broke, he couldn’t find a new one at Loews, and the pipes he needs to fix/replace are soldered not threaded. Consequently, we have no water in the house and the plumber’s coming at 8am. We went out for lunch so I could use their bathroom, guess we’ll be peeing out in the backyard this evening. At least it happened Sunday morning, not Friday night.

Today hasn’t been bad, seizure-wise, yesterday was pretty brutal, tomorrow we see the new neurologist. I hope we like him. I hope he has some ideas. I hope he’s not negative.

I told Maria she has a month to stop her episodes. Her dad’s back now. It’s time to move on to other things…