It’s been a little while since I last blogged and things have been on the more difficult side with Ezri, although there have also been some bright spots. She had been doing so well for a number of weeks, but she has just not been the same since since the...
Since Faith was diagnosed when I was pregnant, we have been guessing what life will be like for her. Guessing at each stage in her development how the hh will actually affect her development. Guessing how the seizures will develop/or not. Constantly, thinking should...
I know I will regret saying this as soon as I say it, but this past week has been unusually good for Ezri. Sometimes it seems that all we need is an upcoming neurology appointment so the HH can deceive us, quieting itself down a bit and allowing Ezri some of the most...
I had hoped to have had Ezri’s neurology appointment earlier this afternoon as it was originally scheduled and to be sharing the details in this blog post, but they called Monday morning wanting to reschedule. Just when I was about to be upset, because the last...
When making heart breaking decisions over whether or not surgery was the best option for Faith, we were warned of some problems that could result due to damage to the hypothalamus during surgery. Like many of you, we stressed and stressed over this but as the seizures...
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