Wednesday, March 10, 2010
Happy Eve
I just wanted to mention that Eve had a great weekend. We realized during dinner on Sunday that she didn't cry once that day. I'm sure this isn't the first time this has happened - just the first time we've noticed. Usually she gets upset over something. She can't tell us what she wants so she will get frustrated. But not on Sunday! I think she's really growing up. I still can't believe that she's 4 1/2.
Thursday, March 4, 2010
wheelchair will be delivered
So, the new wheelchair will be delivered on March 25th!!! Only 5 months after we ordered it. Grrr..... But I'm happy it will be here. I shouldn't complain.
neuro and EEG
Yesterday, Eve had her neurology appointment and an EEG. It was a tough day. For the EEG, Eve needed to be sleep deprived, so they had us keep her up until 11pm the night before and get her up at 5am yesterday. We also had to keep her awake for the 1.5 hour earthquake. It wasn't fun, but it wasn't bad.
She had her appointment with the neuro first. It went well. It basically was a check-up to document what skills she still has and which skills she has lost. There were two medical students in the appointment with the doctor. I love when that happens, because you get so much more information as the doctor explains what he's seeing to the students. For example, I might not have noticed that when he tested the reflexes on one foot, they jumped across her body and her other foot twitched as well. I mentioned that I thought it was great for these students to get exposure to mito and the doctor said that's why he invited them in. I suppose if your kid has to be ill, at least there's an opportunity to educate future healers. Anyhow, the dr. is going to adjust her mito cocktail, wants to follow-up in 6 months, and is referring us to a cardiologist for a checkup in June. This is something the mito doc recommended just to be sure that all is well. Since other body systems can be affected by mito, it's always good to keep an eye on them.
As for the EEG, oh boy. They gave her a sedative to help her stay asleep and not care that they were putting sticky electrodes on her head. BUT....she didn't fall asleep!!!! I think she was so concerned about the medical setting, and they wanted her on her back (which she never sleeps on - she keeps startling herself awake - as if she thinks she's falling). So, we finally flipped her on her stomach and the poor tech had to work around with a different position. Eve finally fell asleep and stayed asleep for the test. They monitored her brain waves for about 10 minutes and then woke her up and flashed lights in her eyes. I think the goal was to induce seizure activity. The doctor will call with the results today. Jim and I are expecting that no seizure activity was observed, and that we will just keep an eye out for any future episodes. Eve fell asleep in the car and slept the whole way home. I put her in bed when we got home and let her sleep until 4pm. Then up for 3 hours and back to bed at 7pm. She slept like a rock until 7am.
So, as I sit with my coffee (which I rarely drink in the morning), we are all recovering from sleep deprivation.
She had her appointment with the neuro first. It went well. It basically was a check-up to document what skills she still has and which skills she has lost. There were two medical students in the appointment with the doctor. I love when that happens, because you get so much more information as the doctor explains what he's seeing to the students. For example, I might not have noticed that when he tested the reflexes on one foot, they jumped across her body and her other foot twitched as well. I mentioned that I thought it was great for these students to get exposure to mito and the doctor said that's why he invited them in. I suppose if your kid has to be ill, at least there's an opportunity to educate future healers. Anyhow, the dr. is going to adjust her mito cocktail, wants to follow-up in 6 months, and is referring us to a cardiologist for a checkup in June. This is something the mito doc recommended just to be sure that all is well. Since other body systems can be affected by mito, it's always good to keep an eye on them.
As for the EEG, oh boy. They gave her a sedative to help her stay asleep and not care that they were putting sticky electrodes on her head. BUT....she didn't fall asleep!!!! I think she was so concerned about the medical setting, and they wanted her on her back (which she never sleeps on - she keeps startling herself awake - as if she thinks she's falling). So, we finally flipped her on her stomach and the poor tech had to work around with a different position. Eve finally fell asleep and stayed asleep for the test. They monitored her brain waves for about 10 minutes and then woke her up and flashed lights in her eyes. I think the goal was to induce seizure activity. The doctor will call with the results today. Jim and I are expecting that no seizure activity was observed, and that we will just keep an eye out for any future episodes. Eve fell asleep in the car and slept the whole way home. I put her in bed when we got home and let her sleep until 4pm. Then up for 3 hours and back to bed at 7pm. She slept like a rock until 7am.
So, as I sit with my coffee (which I rarely drink in the morning), we are all recovering from sleep deprivation.
Tuesday, March 2, 2010
Wednesday, February 17, 2010
Valentines
Eve's class exchanged Valentine's. Those that were able to write did their own. Others had help from parents. I was amazed at the creativity and kindness of the kids. Each child tried to write something nice about the recipient. Here are two great examples that Eve received:
Translation:
"To Eve. I love it when are [sic] names are next to eth [sic] other at lunch. From Sam." Presumably, if names are next to each other, so are bodies.
And here's one that made me cry:
It's one half of the valentine. The cut out center makes a (sort of) heart when unfolded and the name of the sender and Eve are on the other side. But this side is the best. It's got a picture of Eve and the sender - notice how Eve is drawn in her wheelchair. Isn't that awesome??????
Translation:
"To Eve. I love it when are [sic] names are next to eth [sic] other at lunch. From Sam." Presumably, if names are next to each other, so are bodies.
And here's one that made me cry:
It's one half of the valentine. The cut out center makes a (sort of) heart when unfolded and the name of the sender and Eve are on the other side. But this side is the best. It's got a picture of Eve and the sender - notice how Eve is drawn in her wheelchair. Isn't that awesome??????
Sunday, February 7, 2010
bowling party
Eve was invited to a bowling party this weekend. It was a perfect day. Bowling, friends, and cake and ice cream. Can it get any better? Blissfully, Jim came and helped with Eve which saved my back and allowed me to talk with other parents. Fun times for all!
Thursday, February 4, 2010
EEG scheduled
I called the Neuro today to see if last month's seizure warranted any testing. I thought it would be good to double up on the appointments rather than make a separate trip if he wanted additional testing. So, he does want an EEG on that day (but sooner if she has another episode). The scheduling nurse said she'd get back to me if they wanted Eve sedated for the procedure (which they often do for children under 5). Although I am not into extra meds for my child, that would almost be a relief since Eve is so intensly fearful of medical settings. I'd be worried that they wouldn't be able to do the test properly if she was screaming and crying.
So the EEG is scheduled for the beginning of next month.
So the EEG is scheduled for the beginning of next month.
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