Neurology Appointment

The stomach flu continued through the weekend, as did our struggles with getting seizure meds taken. I was so excited when on Sunday Gracie asked me for a banana and ate the whole thing. Her appetite is slowly returning and we are all on the mend. Jeff remained healthy throughout.

Yesterday (Monday) it was back to work and daycare for all of us. Gracie also had her 6-month appointment with her neurologist in the afternoon. We had extended her 3-month appointments to 6-months, but her break through seizures make it evident that the time between is too long. We're going to try every 4-months and see if that works out better. We were a little nervous that her seizure type was changing, but in talking with her neurologist, we aren't convinced that is so - Gracie's seizure type is Complex Partials and the activity she was having seems to fit that. If we see any more seizure activity or anything that continues to look concerning, she will need to have another EEG. I'm hoping we can avoid that.

Gracie's appointment went very well. Her neurologist was very pleased to hear her speak and to hear some of her words. She was thrilled to hear that she asks us "What's that?" alot. Dr. N. was also thrilled and amazed with Gracie's muscle tone and flexibility. She has always struggled with low tone and very tight muscles, but there has been a world of improvement with both, to the point of it really not being problematic anymore. Gracie was assessed at a solid 2 year old to 2-1/2 year old level. I was thrilled with this assessment, meaning she is only a year delayed. This is a great place to be knowing all of the challenges she has overcome and continues to work through.

Gracie was like a little rock star returning to the clinic. Every one there knows her by first name and she had hugs and smiles for everyone. You can definitely tell that was our home away from home for a long time. We made some good friends.

Gracie had a good evening, but a very restless night. She kept crying out in her sleep. I continually had to assure her that mommy was there and then she would calm down. At one point she started saying and signing "more" in her sleep. I'm not sure what that was about. She did have a really hard time waking up this morning. It was also a rougher morning for her behaviorally as Jeff was on late shift, so he was in the house. For some reason, mornings go so much more smoothly if it is just her and I. It's not anything Jeff does or doesn't do, it is just a break in the routine. We also find her behavior is always much better one-on-one, than when all three of us are home.

I'm hoping she has a more restful night tonight.

Love,
Lisa, Jeff, and Gracie