Time in the Sun

What a beautiful day today. Brodie and I decided we needed to have a tea party on the front porch and enjoy the sun. Then Hope decided to join us and get her dose of Vit D for the day, along with Savannah (our friend from next door), who loves to hold Hope.

The evenings are consistently rough for Hope and the seizures are becoming more frequent during the day as well. The smiles still happen in between seizures, but they are noticably less. Last evening and this evening, we had to insert the NG tube to give her meds and formula. She just has back to back seizures that make it impossible for her even finish a sucking motion. She's so cute in between seizures, she just goes right back to 'eating' her fists and looking for the bottle, as if to say, 'hey, what are you waiting for', and then two seconds later she's spaced out again. We had to give her ativan during the day today, which threw the whole day for a loop. Hopefully we can get her to sleep tonight. Although, right now she's having so many seizures again, that I'll probably be giving the ativan again. I'm getting tired of making all these decisions.