Double Dose

Today we doubled Gracie's dose of Vigabatrin. I was nervous about what effect this would have on her and well I was pretty much right on. It makes her very groggy, she crawls around looking stoned. I feel like this mean mom and then I remind myself it must be done for her longterm outcome. Sometimes it is hard to look past the here and now. Gracie wanted to be held and bounced a good portion of the morning, so we wore the carpet down a bit today. She did get excited when I let her watch her absolute favorite DVD "Signing Times - Volume 1".

After lunch Gracie took a three hour nap. I kept checking her to make sure she was still breathing. I sort of encouraged her awake after three hours. She wasn't the happiest girl to have to wake up. I was having a low energy day myself, so I slept for an hour with her. That felt good.

She was pretty groggy and more irritable this evening. She did enjoy her bath tonight. I hated to take her out of the tub because she was the happiest she had been all day. Right after her bath we had her injection and she didn't flinch or cry. I'm either getting better at these or she is just one brave girl and I'm thinking it's her being brave. By the way, for those that have read my earlier blog entries, I no longer cry after each injection either, so I'm getting a bit more brave myself. We still saw plenty of spasms today. Hopefully, tomorrow will be better.

Please keep the prayers coming. We are so overwhelmed by the prayers, support, and encouragement we are receiving from everyone. Please know we are so grateful.

Thanks,
Lisa, Jeff, and Gracie