On Monday, we had our appointment with the new Prosthetics and Orthotics place. It was a great experience. The orthotist, looked at Eve's braces (which have been irritating her) and her legs and feet. He adjusted the braces to buy us some time, and is going to try to get a new set of AFO's approved by insurance (since it's only been a few months since we received her last pair). We're hoping to get a pair made by Cascade and this office does order from Cascade. I felt very much relieved that this is a much more professional and competent office.
Also, I had to take Eve to the pediatrician yesterday. She didn't sleep well Monday night, and woke up with the tell-tale stinky-pee diaper. Yup, urinary tract infection. Low grade fever by the afternoon. So, the doctor had to catheterize her for a sample, and preliminary results showed white blood cells. Final results will be in on Thursday morning. We started her on antibiotics last night.
All else is well, but having back to back days with medical appointments (with one being unexpected) reminded me of just how healthy she's been this year. This is what it was like last year. You never knew just when you'd need to see the doctor and there was an element of lack of control. So, I am so very grateful for how well she's done this year.
Wednesday, March 31, 2010
Sunday, March 28, 2010
visit with G and P
Grammie and PaPa came for a visit last week. We all had a wonderful visit and Eve especially loved spending time with her grandparents. She squealed with happiness when they took her out to the bus each morning. It was if she was showing them off.
All is well with Eve. We went for her GI checkup last week and the doctor taught us how to change her g-tube button (it needs to be done every 4 months or so). Now we don't have to make a trip to his office 3-4 times a year. Also, after much frustration with Eve's Orthotics place (including waiting 2 months for hand braces that only take 2 weeks to be delivered from the company that makes them - and then to fine out that the guy ordered the wrong braces.), we're going to a new orthotics place tomorrow!! Eve's AFO's are irritating her feet and her PT recommends that she doesn't wear them anymore, so hopefully we can get it fixed or order new ones (and hopefully insurance pays for it).
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
Subscribe to:
Posts (Atom)