Yesterday we took Eve to Baystate for some testing/appointments. First stop was her neuro checkup. A quick visit. We mentioned how her leg has been acting up. He asked us if we thought she was in pain. The answer to that is definitely sometimes. There are times she will wake in the middle of the night crying fast and hard. It's like her little leg is having a spasm. He recommended either Valium or Baclofen at night. He ended up prescribing the Baclofen because it lasts longer and is less sedating. So we gave it to her before bed and - miracle of miracles - she slept through the entire night!!! So, I truly hope it gave her relief and was not a fluke. So, we'll see how tonight goes. We also told him that she has an appointment at the Shriner's hospital to look at her leg and muscles. (**update: She slept through the night again!**)
Eve also had a VCUG at the main hospital. I was dreading this, since Eve has had it done twice before and it was not pleasant to say the least. Fortunately, this time was different. Rather than placing her on a regular Xray table and filling her bladder all the way and watching her scream until she finally pees on the table, it was much better. They had her on a table that looked like it was connected to a CT scanner. They catheterized her and slowly dripped into her bladder a liquid with a small amount of radioactive material. They put her diaper back on and she just had to lay on her back. She was scared and cried, but wasn't in pain (after the initial cath process). She wasn't hysterical like in the past. I was able to tell her that if she just peed, we could get out of there. It wasn't much longer before she did. The staff was great, and it was a much better experience than I was expecting. So now we wait for about a week until we have our followup with the surgeon.
The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Friday, March 18, 2011
Thursday, March 17, 2011
Wednesday, March 9, 2011
decisions...
We have happy news to share - we are having a baby this summer (end of July)! I had my ultrasound yesterday and all looks well. We don't know if it's a boy or a girl (by choice), but are relieved that for now the baby appears healthy. I'll post pictures soon, but there are no cute profile shots - just Skeletor frontal face shots.
So, we need to make a decision about the future of this blog site. Do I keep it about Eve and create a separate blog, or do I shift the focus to include the new baby and have the blog center around our family?
So, we need to make a decision about the future of this blog site. Do I keep it about Eve and create a separate blog, or do I shift the focus to include the new baby and have the blog center around our family?
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