Tuesday, November 20, 2007

What in life is gained without something lost?

It is such an intense and powerful lesson to learn - perhaps one of life's hardest.

Everything was perfect and perfectly planned. My pregnancy was easy, beautiful and seemingly without complications. Kelsey and I joked... how could raising a child be any harder than bringing up the GFC baby? The garden was ready for a few week hiatus from the hands of its resident care takers. The nursery was complete - a lovely second-hand crib, local art on the wall, a driftwood and shell mobile from findings during my walks on Indianola beach. We waited...

All parents have an idea of what they think their children will be like and what their experience of parenting will be like. I've gained so much in my loss... I know Kelsey would say the same.

I have an acute awareness of what really matters. I am thankful everyday that Kelsey, Owen, our family and our friends are in my life.

I have an understanding of the tenuous balance that exists in matters of life, health and death.

I have a deeper sense of myself and my connection with all other living creatures.

I haven't written for several weeks as things changed dramatically just four days after my last posting (during Grandpa Marshall and Nai Nai's visit) and we've been trying to cope, regroup, get further testing, and figure out how to move forward.

Owen began having seizures on November 3rd, what an EEG deemed a few days later to be "pre-infantile spasms." Since then, these have progressed to full infantile spasms, as evidenced by their timing, physical manifestation, etc. An EEG tomorrow will, no doubt, confirm this diagnosis. Infantile spasms are very rare, very difficult to treat and indicate that there is a serious underlying problem. Owen currently has 6-7 episodes a day, upon wakening, with clusters of 30-40 during each episode. They have left him very, very tired. He's not eating well or sleeping well. We started him on a medication, Zonegran, for these two weeks ago. This has not helped. The next step is ACTH - a steroid with pretty intense side effects.

We decided to move forward with an MRI, which Owen had a week ago and were very surprised to learn the results. Although they aren't 100% certain, the doctors feel that the MRI has potentially ruled out a hypoxic event (lack of oxygen) either inutero or during labor and delivery. They saw little, if any, scarring (cell death) or any structural abnormalities. What they did see is that Owen's brain is not growing as it should. They've done all of the chromosomal analysis and testing for the more common metabolic disorders, and they've all come back negative. We are now exploring a small number of rare, treatable metabolic disorders and the larger number of rare, nontreatable disorders. This will include more visits to Childrens, more blood draws and a lumbar puncture (spinal tap).

The singer, songwriter, feminist, and beautiful human being, Ani DiFranco, is one of my favorites. The lyrics from Buildings and Bridges have been running through my head, especially the following...

buildings and bridges
are made to bend in the wind
to withstand the world,
that's what it takes
all that steel and stone
are no match for the air, my friend
what doesn't bend breaks
what doesn't bend breaks

I'd like to think that I've also learned to be very flexible - in my belief of what's possible, in my ability to move through each new set of challenges and in my ability to go from conversations with doctors about what might be wrong with my beautiful little boy to appreciating everything that is right about him, right now.

Remember to be truly thankful this Thanksgiving. Give your sons, daughters, wives, husbands, lovers, family and friends a hug and let them know how much they mean to you and how much you appreciate them - today. We never know what tomorrow may bring.

Happy Thanksgiving,



Shannon said...

Lots of hugs and positive thoughts from my family to yours. I'm so sorry to hear about the seizures. I was hoping that no updates was a good thing. I know you have a wonderful support system and lots of family and friends nearby, but if there is ever anything, ANYTHING that I can do for you and your family, please just let me know. In the meantime, we'll be thinking good things for you and your family and counting our own blessings.

Morag said...

Oh Stacy, I'm so sorry. Know that you, Kelsey and your precious Owen are in my prayers, and send you all my love.
Xx Louisa

Tiff said...

Sending our love your way!!
Tiff, Jamie and Evan