Natural History Study, Round 2

Livia, myself, and my dad will be heading to Minnesota next Monday. I’m looking so forward to having my dad along on the trip. We should arrive in MN at a decent time on Monday, so I’m thinking a trip to Great America might be on the agenda. We should have a little fun while we are there!

Tuesday will be a long day of developmental testing and forms to fill out. We will also be meeting with the Geneticist, Dr. Whitley. He is a very personable man that is more than willing to talk with us and answer any questions we may have. Last time we were there we were treated very well.

Wednesday will be a long day. We have to be at the hospital by 5:40 am. Livia will be having anesthesia for an MRI, ABR, lumbar puncture, tubes, and x-rays. She will be in the OR for about 4 hours. As much as these are routine procedures, and my background in the OR, I still can’t help but be a little nervous about her going under. I have total trust and faith in the OR staff, it’s just letting go. Last time they let me go in the OR with Liv until she was totally asleep. I was very surprised they let me in. I imagine how some parents may feel watching their child go under. I’ve seen it a million times, but not my own child. To see her like that was a little hard. She was scared anyway, and I’m sure wondering why I was letting these people at her like that. These are necessary things that need to be done. It just hurts my heart a little.

Lately I’ve been going into Livia’s room in the mornings before she wakes up. I’ve been standing over her bed just listening to her sleep. I pray over her. Every little breath I hear, I’m thankful for. More than anything, I don’t want my child to hurt. The circumstance that we are in can be really hard at times. I find myself being very strong when I need to be. I can give all the facts about MPS, and recently educated a medical student AND physician about Sanfilippo Syndrome. However, in my vulnerable times, when I’m alone, or even praying, I’m scared for Livia. “Break my heart for what breaks YOURS.” In these vulnerable times when I’m scared or sad, I have to remind myself that God is right beside me crying for Livia as well. I’ve been entrusted to take care of this little angel, and that brings me comfort.

Please think of Livia next Wednesday. Say a little prayer of comfort for her.