Gracie had a rough night and was extremely restless and cried out in her sleep a number of times. She awoke in a very sober mood and we worked to get any smiles out of her. She was also quite snuggly and wanted to be held. She also awoke with a bloody nose. Not sure why. At first I thought perhaps it was too dry, but I keep a humidifier going in her room all night.
Daddy dropped Gracie off at daycare and she had a good day. Daddy also picked Gracie up at daycare, but on the way home noticed she wasn't feeling very well. When he took her out of her car seat he realized she had a fever -- 102 degrees. Jeff gave Gracie some ibuprofen to help with the fever and she was asleep, but still burning up, when I came home. I layed with her for quite sometime and she was so restless, you could tell she just did not feel well. Her fever came down to just under 100 and she seemed to perk up enough to drink some Gatorade and have a little to eat. Poor thing.
I talked with Gracie's pediatric neurologist today about her ongoing seizure like activity, which has become more frequent as we've done our latest decrease of Vigabatrin. Rather than increase her Topamax anymore, she wants to monitor Gracie with another 24 hour EEG to see what kind of seizures we are dealing with and to see if it is the Infantile Spasms coming back. We don't think that is the case, but can't rule it out without the EEG. So on Friday morning we will be admitted into the hospital for 24 hours. I don't look forward to this at all, but I know it is the best thing so we know what we are dealing with. If you have any extra prayers, we could sure use them. Thank you!
Gracie is now sleeping and I'm going to follow shortly. I think it may be a long night ahead.
Love,
Lisa, Jeff, and Gracie
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