Along for the Ride.

I know that there are a number of you who check in on us, who also have children with cerebral palsy, and I think you will find the essay below to be so beautiful and true - as well as intelligently written (although I hope that those of you who do not have children with CP and who choose to read this long essay, will also enjoy and appreciate the subject and style). The essay is from Brain, Child: The Magazine for Thinking Mothers and is entitled, Along for the Ride. I read it and said, "Yes, yes," and laughed and cried and laughed and cried. Thank you, Melissa, for thinking of us once again and for sending this our way.

Our happy list...

Owen had his PEG tube replaced with a Mic-Key button today. It was a 15 minute procedure although he was anesthetized for the process as the PEG removal can sometimes be painful. What a sweet swap! The 12" long PEG tube was always getting caught on things, was unsightly, and impossible to "tuck" into his clothes. The button is great and is no more than 1/2' high and about 1' wide. We just plug the tube in and out of the button as needed. It's almost like a second, higher profile belly button. Since part of the procedure utilizes a scope, I requested that the GI doctor look for any signs of scarring in the esophagus from the prolonged, severe GERD (reflux) and for any potential ulcers in the stomach from the prednisone. The photos are gorgeous (yes, I am referring to those of my son's stomach, esophagus and entry into the intestines) - pink, smooth and perfect. Dr. Whabeh said everything looked just as it should and gave Owen a clean bill of health. A clean bill of health!!!

Oral feeding progression. Owen loves cantaloupe and watermelon. Partly, I think, because he is teething like crazy. His two bottom teeth are about to pop and we discovered last week that he loves to gnaw on cold, sweet melon. He also allowed me to give him a significant amount of water today by mouth. These are HUGE progressions for us.

Weight gain. As I've mentioned in previous recent postings, Owen's weight flat-lined for two months, from the day he got the PEG tube until about three weeks ago. He was hanging out at around 14 lbs. At today's weigh-in at Children's, with his t-shirt and pants... 16 pounds. Oh yeah. Eighteen pounds by one year of age and he'll be in the third percentile - the first time he will have been on the charts since he was about three months old. We have three weeks until Owen's first birthday.

Smiles... Oh my. The last few days, Owen smiles regularly, predictably and INTENTIONALLY. He smiles when you say hello to him, when you sweet talk to him, and when you laugh. He focuses, pauses and then the smile begins, a bit lopsided, curling up from the left side of his mouth and spreads wide across his face to his eyes and ends with a smile so big that his mouth is open wide. It is so adorable it makes me crazy-happy. Kelsey can't stop taking photos.



Keto diet. No word yet from Dr. Sotero or his nurse. Strange, given their usual responsiveness, yet we suspect that they are trying to either locate a private RD to work with or have convinced Swedish to move forward with bringing one on to help manage the diet. Our understanding - through the grapevine - is that Dr. Sotero prefers to have control over the treatments his patients receive and since he was the PI on a keto study at Children's and knows this diet well, it would also make sense that he would want to manage Owen's care himself. It has been a week since I left the second message with Patti (Sotero's nurse) and if I don't heard back by Wednesday, I will call again. But this issue feels less urgent as...

We made a mistake with the Vigabatrin. It actually works. The first two days that we gave it two Owen, we crushed the calcium-size pills, mixed them with water and administered the solution to Owen, immediately. This is when we saw the seizures decrease by about 90%. Then, after a couple of days, we changed things a bit. We would get busy prepping Owen for bed and would split the pill in half and soak it in 5mL of water while we got everything else ready, sometimes taking 10-15 minutes before giving him the solution. This is when we noticed the seizures returning - full-force. Kelsey said to me on Thursday of last week... "What if soaking the Vigabatrin makes it ineffective?" So we went back to crushing it, adding water and administering it to Owen immediately. Since Friday, Owen's seizures have tapered to one or two before he falls asleep (down from 20-40). He falls asleep so much faster, is sleeping more soundly, is smiling more, and has longer alert periods - all since Friday. I read online this last weekend that Vigabatrin becomes "chemically unstable" when left in a solution and that it must be "administered immediately" when mixed with water. We should have known this, however, it was not on any of the accompanying paperwork that you get with prescriptions. The Vigabatrin works!!!!!

Vigabatrin's effectiveness for Owen is a big, big deal - it is not like ACTH in that it will only "work" for a short period of time. Over a longer period of time, such as a year or two, it may lose its effectiveness, but for now, we can count on it to work for him. We won't know for another couple of weeks whether it will completely eliminate the seizures as it takes a few weeks at the full dose to see its potential, but it has already changed our lives dramatically. We will still proceed with the keto diet in the future, but will prioritize weight gain (which is minimal on the diet) and enjoy our happy Owen.

This is the best it has felt to post in a long time. Thank you for all of the good wishes, thoughts and crossing of fingers and toes. It helped - tremendously. We really needed these positive changes and regardless of the challenges we may face in the future, right now, today, things feel really good.

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