Tuesday, September 27, 2011

Medicine and Prayers

If you know me at all, you know I'm not religious.  That hasn't changed.  But I'm praying now more than I ever have before. Our wonderful little boy, Rowan, was diagnosed on 9-20-2011 with Lissencephaly and our whole world changed in a moment.  I held my sweet baby, who was so groggy from continuous seizures, and I cried feeling my heart collapse in on itself... The doctor started reading off of his MRI results and after the first words... 'There is significant decrease in sulcation in the frontal...' I knew we'd never be the same and I knew Rowan was very sick.  I'll remember that moment for the rest of my life.  Dr. Yoe, a nurse, Steve, Rowan and I- in room 489-at Sanford Hospital in Fargo.  That's the moment...

I cried and held him, loved him and felt so sad he wouldn't get all of the life I had planned for him.

And let me tell you, I sure had a plan for our little guy. I just have a different plan now, I guess.  A modified one.  My new plan is to try to keep Rowan alive and comfortable and to try to get some of him back.  He's in pICU right now and sometimes wakes up in as happy a mood as a medicated little baby can be in.  I see glimpses of my 'old Rowan'.  He coos and smiles and tries to grab his feet.  He's just so sleepy, though. 

I miss him so much. I wish I had taken more videos of him doing his Rowan things. I wish I had more pictures from before.

I wish I could fix his little head and I wish I could take him home and go back to normal.  That's what I'm wishing right now.  I guess I don't want a new plan- I want the old one back.

Here's our sweet boy resting after receiving three different anti-seizure medications and before a second EEG.