Happy Valentine’s Day (a day late)! We went to a Valentine’s Banquet at our church last night. We kept Carmen with us and she stayed awake from 6:45pm-10:30pm. Carmen’s regular bedtime is around 7:30pm so this was quite amazing for Carmen! We had a yummy dinner (crab cakes) and listened to a wonderful violinist, Jaime Jorge. When we got home, I told Carmen’s nurse that I expected Carmen to sleep like a rock since she was so tired. Next morning, the nurse told Dave that Carmen stayed awake until 3:30am! I guess the Valentine’s Banquet was quite exciting for Carmen!

Carmen’s seizures are increasing. Today she had two separate episodes of repeated seizures in which her arms and legs flew up. Both times, she cried after the five minutes or so of seizures. She sees her neurologist next week. Seizures are part of this disease but I need an idea of what to expect and what can and cannot be controlled.

Carmen is almost 19 months old and I thought I would describe what Carmen is like at this point. First, Carmen is very cuddly. Holding her is like holding a 27 lb. beanie baby; she melts into you. She is immobile but she does move her arms and legs, very slow, tiny movements. If I strap her into a reclined chair, she sits there until I move her to another spot. For the most part, Carmen is very content. The month prior to her G-tube surgery, she did not make one sound except to cry when we inserted the NG tube into her nose. She has cried some in the past couple of weeks since her surgery, mostly from gas pains. Maybe once per week, she will smile. We don’t see much response from her but she knows when we are next to her. If we make noise, she will look up. Carmen has very few purposeful movements but I did see her trying to touch her tummy tube shortly after it was put in. When I sit and hold Carmen, she is perfectly still and looks so very content and peaceful.

This week, a very sweet little boy and his mom came for a visit. I am sad as the little boy has recently been diagnosed with GM1-Gangliosidosis. To his mom: if you are reading this, please know that we are praying for your son and your family and I am here for you.

Tomorrow, I’m going to a Women’s Breakfast at church. Childcare is provided so I decided to take Lauren so Dave and Carmen can have some Daddy-Daughter time. I wonder how many Andy Stanley DVDs Carmen will watch with Daddy?!