Tuesday, June 17, 2008

Year of the Slug.

As if the persistent, cool, wet, March-like weather wasn't enough to knock the momentum out of most of our veggies this year, on top of this we have had to fiercely contend with THE creature who thrives in such conditions (as opposed to Kelsey and I who start to talk endlessly about tropical vacations and get exceedingly grumpy when we've not has sufficient sun exposure), the ones who can do so much damage to our precious seedlings in such a short amount of time. I was in Valley Nursery the other day and I swear everyone had at least one, super-sized jug of Sluggo in their hands, and that desperate look in their eyes that those of us in Western Washington get when we realize that time is running out. Those seedlings that haven't been mercilessly chomped on by the hidden army of slimy, slow-moving soldiers, are seemingly suspended in time. The zucchini, cucumbers and tomatoes look exactly as they did in early May. If the weather doesn't turn warm soon, our plants will be mere adolescents when their time comes and the growing season ends in early October, the bounty and beauty of all of that potential, youthful energy, never realized.

Owen could use some additional rays, too. In the reading I've been doing on the ketogenic diet, I've come across data published last year that suggests that almost half of the epilepsy population has a significant Vitamin D deficiency. This is mostly due to the effect that seizure medications have on the body's ability to metabolize this critical vitamin.

It has been so difficult these last few weeks - significant sleep deprivation, the failing of yet another seizure drug (Vigabatrin), and seizures now numbering 120-150 a day. They continue to occur just as Owen is falling asleep. It took six hours, between 6:00 pm and 12:00 am, to get him to fall asleep last night. It is so difficult to watch - he's so exhausted and so desperately wants to sleep, but can't.

We are running out of options to control these things - seizures which kids like Owen don't grow out of until they are 3 or 4 years old (and then morph into equally harmful seizures such as grand mal). This is a scary place to find ourselves... That said, what I believe to be our best option, the ketogenic diet, is something we've obviously not yet tried and are currently aggressively pursuing.

We've run into a bit of a snag with finding a site/staff to oversee the diet as Children's Hospital has recently lost one of two epileptologists and two of three dieticians trained in the ketogenic diet. Because of this, they are not currently accepting any new patients into their program. Dr. Sotero, Owen's neurologist, is new to Swedish Hospital (he is the pediatric epileptologist who left Children's) and has not yet been granted a dietician to help manage keto kids. So just today, I requested a referral from Dr. Sotero to either OHSU in Portland or Stanford in the Bay Area. Both have highly reputable pediatric epilepsy centers with associated ketogenic programs. Owen would need a 2-4 day in-patient stay (depending on which facility we can connect with) and then the diet could be managed remotely through phone and email. We are waiting to hear back from Dr. Sotero about moving forward with this new plan.

A few of you have asked to know more about the ketogenic diet. The Charlie Foundation and "The Ketogenic Diet: A Treatment for Children and Others with Epilepsy," by John Freeman at Johns Hopkins University are both excellent resources. Wikipedia also has an extensive entry on the subject.

To help boost my spirits each day, reminding me that there is more going on out there than the gardener's curse of La Nina and Owen's constant seizures, I changed my homepage to DailyGood.org. Check it out if you want more goodness in your life. Speaking of goodness, I had to include this recent photo of Owen, in one of his peaceful moments.



Thankfully, we have had so many wonderful visitors and goings-on the last couple of weeks to brighten our spirits. The Hudgens' came out from Chapel Hill and spent four days with us. We offered to have Cate (holding hands with Owen) split her time between Chapel Hill and Indianola, but her parents weren't up for that. Chris and Dani graced us with their presence (and cooking - damn, those were fine burgers) and both Dani (cuddling on the chair) and their dog, Charlie, made a friend in Dutch. Andrew and Robyn and the twins were over and we set the twins lose with our camera. The 150+ shots they took are fabulous - I had to restrain myself from including more than just the peace offering shot. My Great Aunt, Velma, and second cousin, Dan, visited us this last week. I had a nice day away in the city with them on Friday, when we ate lunch at the infamous Voula's Offshore Cafe (posing with one of the owners who was featured on the Food Network piece). On Saturday, Tobin Kurtzman, (his mom, Tricia helped us with Owen's NG tube) celebrated his first birthday - a miracle, for sure. Sunday, we soaked up the sun in the garden and celebrated Father's Day.






One last note - to all our friends and family in Iowa City and surrounds. We are so glad you are all safe and are wishing you drier days. Kelsey and I have been so shocked to see photos of so many familiar places now flooded.

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"She left pieces of her life behind her everywhere she went. It's easier to feel the sunlight without them, she said." - Brian Andreas

2 comments:

karengberger said...

I learn something new every time you post. Your patience, dedication, openness and love (even in sleep-deprived mode!) are beautiful. Owen is SO handsome; what a gorgeous photo that is.
God bless all of you.

Bird said...

Owen is just beautiful. Here's hoping that the keto diet is the key to help your little boy rest and heal.