Not much progress yet, other than a very sick baby. I liken her meds to Chemotherapy, in the sense that everything we're putting in her has terrible side effects, but the alternative of having ongoing spasms is even worse. One of the more minor side effects is reflux. Although no long term implications, it is making her scream in pain.
At least we are at home now, so that Sheena can go for trips out in the buggy. Actually vitamin D is important, so we have to take her out for 15 minutes twice a day. That one things is really easy to manage, as she's outside for about 90 minutes a day at least.
Mornings are so hectic. I used to love mornings, when I would wake up, go for a run or to the gym, then head to work. No stress. Now I have to get up, give her Zantac to help her stop vomitting up her feed. Give her a breast feed. Then its off to the kitchen to start preparing all of medication that we are giving her. The worst is, when I give her anticonvulsants, then she spits them right back up. Its really stressful.
Here is chubby bubby in hospital with all her EEG monitoring equipment. That was the cot that I slept in with her one night, because she needed to be in sight of the video camera, and she wouldn't settle.
3 comments:
Oh my. I just found your blog. My son, almost 3, has "episodes" which we haven't yet checked out but look like petit mal. I'll be checking back here often to see how Sheena is doing. And you. Blessings to all....
Keeping Sheena in my thoughts--she looks quite beautiful as a chubby bubby :) I love the eye contact in this photo.
bless her little heart...hope the meds help........
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