Happy Birthday, Josie!
The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Saturday, March 23, 2013
Tuesday, March 12, 2013
Eve finally shook the remnants of the cold about a week ago. After being put on Amoxicillin, she took a turn for the worse. Her pediatrician switched her to a broader spectrum antibiotic and we gave her that for 10 days. She finished on Friday and has no more cough or runny nose. However, she did get diarrhea. So, to combat that we backed off the miralax and ended up constipating her. So, we are back on Miralax and trying to find the balance again (and almost there). Speaking of that issue, I swear that the child has a connection between her butt and doctors' offices. Without fail, she manages to poop en route to every doctor's office every single time. So we get there, and I have to ask for an exam room to change her. We had two doctors' appointments this week and I wised up. I thought to ask the nurses for some air freshener, because girl can drop bombs.
So, about those appointments:
Yesterday she had her neurology appointment. We upped one of her meds, but nothing has really changed since he saw her in the hospital. She has lost all of her words for the most part. She really doesn't even say "Ah" for yes anymore. I have resorted to asking her to look at her preferred options rather than saying yes to something. I mentioned how she no longer cries, but has retained her laughter. She is pretty apathetic about some things, but still manages to laugh hysterically at her brother or father. She still has her sense of humor.
Today we went for the GI followup. That went well, too. She weighs 45lbs!!! She has put on 9 pounds in the last 6 months. Consequently, the GI said to back off her feeds a little. So, I'll keep her on 20 hours a day, but reduce the rate a bit. All else is going well. He said something to the effect of not rocking the boat.
Here is a picture of my folks and the kids. Jim is on a trip this week (more on that later), and they came up to help out. Seamus is keeping us all entertained.
So, about those appointments:
Yesterday she had her neurology appointment. We upped one of her meds, but nothing has really changed since he saw her in the hospital. She has lost all of her words for the most part. She really doesn't even say "Ah" for yes anymore. I have resorted to asking her to look at her preferred options rather than saying yes to something. I mentioned how she no longer cries, but has retained her laughter. She is pretty apathetic about some things, but still manages to laugh hysterically at her brother or father. She still has her sense of humor.
Today we went for the GI followup. That went well, too. She weighs 45lbs!!! She has put on 9 pounds in the last 6 months. Consequently, the GI said to back off her feeds a little. So, I'll keep her on 20 hours a day, but reduce the rate a bit. All else is going well. He said something to the effect of not rocking the boat.
Here is a picture of my folks and the kids. Jim is on a trip this week (more on that later), and they came up to help out. Seamus is keeping us all entertained.
Friday, March 1, 2013
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