Back in the hospital: I had a restful night at home relatively speaking. I got up at 5:45 a.m. to survey the status of recycling compliance in our neighborhood for a study assignment. I’m trying to keep up with my school work. It is quite a juggling act. The survey of the neighbor’s trash seemed to go quicker than two weeks ago when I did it — or maybe it seems much easier to stand out in the cold, pre-dawn dark, looking at people’s garbage and filling out survey forms, than enduring a restless night in the hospital while watching your little daughter suffer seizures….That is tonight’s assignment. It has been hard, but I feel that Ella is in the good hands of Dr. Duffy. One of the families in our support group that I went to last night, has been through the same thing. Their daughter spent the first 5 months of her life in hospital going through the seizure med routine.
Dr. Volpe kept saying the right combination and amount of meds would work. They did. I’m optimistic about them gaining control within the next few days. I came away from our meeting at Johns Hopkins with mixed feelings – both hopeful and pessimistic. I’m worried about what the whole unnamed syndrome (hemi-hypertrophy, HME and the nevi syndromes together) mean for the long term.
Just trying to live each day at a time and put anxiety aside. At this point there doesn’t seem to be any advantage to planning to do the surgery there. We have a meeting with Dr. Black, the senior neurosurgeon here on Monday.