I have great faith in a seed.

I planted my first winter garden this year, albeit a little late. Fortunately, mother nature is on my side and the mild fall weather we are having has helped my seeds along quite a bit. The radishes, green onions, kale, spinach, two types of lettuce (including a wonderful winter hardy, deep red variety called "Merlot"), arugula, roquette and garlic are all up. I confess... I planted 283 cloves of garlic which, yes, will hopefully equate to 283 heads of lovely hardneck and softneck garlic come next fall. All that remains to be "seen" is the watercress. All of the varieties are winter hardy and in researching vegetables for my winter garden this past summer, I learned that the majority of these varieties survive the cold temperatures by producing extra amounts of sugar which act as anti-freeze. Winter veggies can actually be sweeter than summer ones. Go figure. I don't know if any of these vegetables will mature enough to harvest before February, but I DO have great faith in a seed and will be patient.

I am currently enrolled in a Northwest Earth Institute course, "Menu for the Future." Any individual can arrange to hold/host the course in their home. The class I am attending is being held at Leslie and Herb's house every other Monday through mid-November. Although, as Herb noted after the first session, with our group in particular the readings are really preaching to the choir, it is interesting, thought-provoking and engaging none-the-less.

I wanted to share a few links that I hope some of you might find useful and interesting:

Good Food: "An intimate look at the farmers, ranchers, and businesses that are creating a more sustainable food system in the Pacific Northwest."

You Grow Girl blog and book.

Seed Savers Exchange: Based out of Decorah, Iowa. Offers over 11,000 varieties from an extensive "living collection" of seeds saved throughout the generations.

Slow Food USA's Ark of Taste

In Owen news... We had our long-awaited orthopedic visit at Seattle Children's Hospital on Wednesday. I was really nervous about this. Owen is so high tone, his spine already significantly curved and his muscle spasticity such an issue, that I feared the worst - - MAJOR interventions (surgical, drug, etc) at only 15 months of age. In the end, Dr. S said that Owen looked great, is very healthy and is solid and sturdy! He said that he still has excellent flexibility in his neck, spine, hips and feet and that he would like to see us back in a year. As is the case with children like Owen, he said that every child is different and that his curvature could remain the same or could become problematic. Only time will tell. There is no sign of hip dysplasia - a huge relief. I KNOW that all of the work that Barb has done at the PT visits, the time she has put into positioning and the time we spend almost every morning on stretching and exercising, has helped tremendously.

I recognize there are probably a number of people out there who read this blog, who haven't met Owen, who wonder how he is doing developmentally. As I just told Barb last week at O's PT visit, hope reigns supreme around our house. That said, we are also realistic. Owen is significantly developmentally delayed. He has little control over his extremities, except for a bit of volitional use of his right hand. He has little head control and no trunk control. He still has periods each day where he is very fussy and uncomfortable due to being overstimulated, constipated or overly tired. He does not regularly make eye contact and will often focus his gaze on the brightest light in the room (common for kids like Owen with cortical visual impairment).

But, if you read between the lines, or have been following this blog the last year, he has changed so much given where he's come from and what he's been through. His smiles are now slow, sweet and more deliberate (and heart-melting). He recognizes voices and loves it when Daddy comes home. The occasional "use" of his right hand is becoming more focused and frequent. He recognizes Dutch. His vision is improving very nicely and he scans faces and spaces now versus holding his gaze to his right side. He no longer shows signs of nystagmus. He is slowly gaining more head control now that he is no longer having as many seizures and we have time to focus on this important skill. His severe reflux is gone. When people ask how Owen is doing, I say "great" and follow it up with "it is all relative." He IS doing great.

Owen's weight has been such an issue the last eight months. He lost quite a bit after getting the tube, vomited more frequently and was fussy during feedings, so we backed down on the volume for days at a time. Then the spasms returned in May which complicated feedings even more. He was down to 15 pounds this summer. At our weigh-in on Friday at the pediatrician's, we were delighted to see that he is now a whopping 16 pounds 11 ounces! He has gained 21 ounces in the last four weeks. Since he is stable on the keto diet, we are hopeful that this trend can continue.

While he is currently stable on the ketogenic diet, he continues to have 5-10 seizures each day as he falls asleep. For most parents, any seizure activity is a scary thing. For us, 5-10 seizures compared to 120-150 is not only amazing, but it is also something we are okay with for now. O is almost completely weaned off of the Vigabatrin which has eliminated the partial seizures we had been seeing (rapid, small jerks of the head in clusters of 4-5). Owen's neurologist suspected that the Vigabatrin was causing these and since we all felt as though it wasn't doing anything for his spasms, decided to try a wean. This wean has also been really beneficial for his level of alertness and his ability to focus and learn. Seizure medications are so rough on kids and have such major, debilitating side effects. The lesser of two evils.

If you are a parent who is considering the ketogenic diet for your child, here are a few tips:

1: Constipation is a HUGE issue and can be significant enough on the diet to be both extremely uncomfortable and dangerous. Owen just had his first BM yesterday, without the use of suppositories, since leaving Stanford eight weeks ago. Kelsey and I have never been so happy to see a big pile of poo in our lives. A few weeks ago, we suspected a bowel impaction and had to do a clean-out so that it didn't turn into a bowel obstruction. Scary stuff.

2: Miralax can be great for relieving constipation but be aware of the fact that it can produce VERY loose stools, making your child extremely uncomfortable. Although the recommendation was to continue to increase the Miralax dose, after a few weeks we could see clearly that this was causing TOO loose of stools and making O very unhappy. We stopped using this and went to a magnesium supplement. His flexing at the waist and stomach discomfort dissipated within a few days of discontinuing Miralax. The Magnesium supplement seems to be working for his constipation and is beneficial in so many other ways.

2: Probiotocs. These were a life-saver for Owen! Leslie reminded us of the importance of a balanced flora in the belly and just a couple of days after starting Owen on these, his overall bowel health improved. Just be sure, as with any supplement, that you check with your dietician or ensure that there are no fillers or added carbohydrates that would alter the 4:1 ratio and potentially throw a child out of ketosis (and spike seizure activity).

3: Mineral oil: This was recommended as a way to lubricate the intestines. We did not know, however, until reading more about the use of this on the ketogenic forum that mineral oil can actually inhibit the absorption of medications and all of the fatty vitamins. It is also not suggested (by an NIH article) for long term use.

4: The Ketogenic Diet by Dr. John Freeman: Essential! We had a wonderful experience at Lucille Packard Children's Hospital, but there were a few things they didn't tell us that would have helped us quite a bit these last few weeks. We ended up pulling out The Ketogenic Diet a few days ago to get some of these questions answered. We found the answers and more...

5: Free fluids: For the highest level of ketosis and best seizure control free fluids must be controlled and somewhat restricted. There is a fine balance between dehydration (which can cause kidney stones) and adequate hydration to avoid this complication while also maximizing the benefits of the diet. The book lays out the ways in which to calculate fluid intake, measure hydration and how to watch for complications. We had been giving O too much water with his medications, when we flushed his tube, etc and have adjusted these amounts within the last two days.

6: Mixing of the Ketocal formula: We wondered for two months why the Ketocal seemed like it was not properly mixed and the last 2-3 ounces would not flow through the tube/pump. We learned in The Ketogenic Diet, that the formula will only completely dissolve when mixed with water at 113-122 degrees - mush warmer than what we were using. This has dramatically improved the consistency and the flow of the formula through the pump.

7: I would highly recommend the Yahoo Ketogenic Diet Forum. I have had so many of my questions answered by thoughtful, knowledgeable parents. I don't know what I would have done without this resource.

Update on Owen's sibling: We have moved forward with completing the process to save his cord blood. Whether this will be used for Owen in the future, for O's sibling or whether it will simply sit in cryogenic storage for a hundred years, remains to be seen. We felt it was both a logical and easy decision to have it saved, however, especially since Swedish has a streamlined process set up for collection and delivery to Cord Blood Registry. (Addendum, post-post: Karen Gerstenberger is always so thoughtful about leaving comments on O's blog. As she reminds me, cord blood can be used by other individuals, including cancer patients.)

I had my 23 week OB appointment this Thursday. Everthing looks great. Dr. Burdick reviewed the quad screen results and said that they are perfect. I have gained 11 pounds in 23 weeks although the way this one is kicking, I feel like he's already significantly larger than Owen was at this point. My only "complaint" with this pregnancy is that I am definitely more tired the second time around. But my pregnancies, so far, knock on wood, tend to be so easy that I feel like, if that's my only issue, I'm doing pretty damn good.

And Kelsey? You never get to hear from him... We'll, he has perfected both the sourdough baguette and the rosemary/salt loaf with the "mother sponge" sourdough starter that we've had going now for a couple of months. They are divine - we now get to have fresh bread on a regular basis with his loaves plus the one we pick up from Judith here in Indianola on Wednesdays. Judith is an amazing baker/foodie. She used to own a cafe and bakery in Kingston but now works out of her dreamy, commercial kitchen in Indianola. It is like walking into a rustic kitchen in Italy with a huge, central wooden slab as a work surface, wood beams stretching across the kitchen ceiling, fresh mozzarella hanging from the beams, dripping into buckets and a Hobart mixer as tall as I am. She recently started selling locally raised chickens - we bought four at four pounds each. Janet will be bringing her chicken shears next week to teach me how to cut them down. She picked them up along with our bread order last week as we were at O's ortho appointment and told me afterwards that she hasn't seen chickens that fresh and that color since she was a girl on the farm. They are a beautiful, healthy pink color - nothing like the chicken you see in the grocery store.

Back to Kelsey... he is actually in at Grounds for Change today, working to get things in order as we enter the busiest time of the year, November and December. Things are going great at the biz - we are so fortunate to have such amazing staff and we know this year will be our best yet. Our goal, come February, is to have Kelsey stay at home on Fridays so that he can have more time with both kids. We are really looking forward to having three days a week together as a family. Kelsey is my rock. Nothing much really changes with him although I believe he does continue to improve with age - like a fine wine.



I installed the "subscribe" feature on the right hand side of the blog for those of you who kindly check the blog each day only to be disappointed by my posting negligence. This way, you can sign up and receive a notification when I've entered a new post.

Also, there have been a few parents who have wanted to have direct communication by email about various treatments, experiences, etc, relating to Owen. I have now attached my email address to my profile so that you can email me directly with these questions.

Lastly, I will try to get better at labeling my posts so that the links on the right side will have some meaning. I know many parents have found this blog and use it as a reference for their own experiences. Hopefully, the labels will make it easier to find postings that may be relevant to the issue at hand.

Cheers and love from Indianola,

S/K/O

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"The more I read and the more I talked to other parents of children with disabilities and normal children, the more I found that feelings and emotions about children are very much the same in all families. The accident of illness or disability serves only to intensify feelings and emotions, not to change them." - Judith Weatherly

And we continue to grow all sorts of goodies.

Finally... our garden is doing great and is producing all sorts of yums and showy blooms. I found a wonderful variety of pickling cucumber from Territorial Seed that I planted this year. I really like the pickling varieties as they stay small and sweet. The figs are almost ripe and have already set the second round of fruit. We have not yet, within a season, been able to harvest this second crop as it always turns cold before they can ripen. Perhaps this year...



I am also growing an heirloom variety of sugar pumpkin that I am pretty excited about. They are on the smaller side and are lovely from the outside with deep grooves and an intense shade of orange, and are fleshy and sweet on the inside, perfect for pies and all sorts of goodies. I'm open to receiving all recipes that include fresh pumpkin - even after distributing some around Indianola, we're going to have quite a few to play around with. Pumpkins always make me think of my sister, Laura. I believe it was back around 1980 that my parents, on our several acres in rural Johnson County, Iowa, where we grew most everything we ate, grew an enormous pumpkin. They sent a photo into the Press-Citizen newspaper of my sister sitting on top of this orange mammoth. She would have only been three or four years old and I think this pumpkin weighed close to 80 pounds. She could have easily fit inside. I'm going to have to dig the photo up, scan it and post it sometime around Halloween...



Our two bulb beds have really been producing wonderful flowers this year - several varieties of dahlias, gladiolas, bells of Ireland, purple coneflower, some stunning tigridia and a number of other bird and bee friendly flowers. I was out in the garden the other day and watched two Rufus Hummingbirds fight over one echinacea flower. I had to laugh - there were probably a hundred other flowers for each of them to choose from.

BASIL! We have a serious bumper crop this year and I believe we'll have enough pesto to survive the long, wet, dark winter. There is truly nothing like pulling a jar out of the freezer in February, thawing it and coating a plate of pasta with the essence of summer. Kelsey does his "selective pruning" like a true basil master and I was surprised after he was done to look at both the bountiful harvest and the still full and thriving basil garden. It looks like we will get three very large harvests this year. The evidence of the first is in the photo with the red cooler - we spent three hours on Friday night, plucking leaves off of stems while watching the summer Olympics. Kelsey then made over twenty, eight ounce jars of pesto on Sunday.




So there are some people who like to cook and who can pull out a recipe book and recreate recipes that guests enjoy and want to know more about (this is me). There are then the people who want to learn more about the culinary arts and who enjoy cooking enough that they go into this as a profession to make a living. Then there are people who are true food artists, who LOVE food and who can't NOT cook - all of the time. The latter is our friend, Joe. Joe and Sara recently moved back to Seattle and came out for an overnight stay here in Indianola last week. They always bring so much great food with them, this time we said just bring yourselves... I did not go to the grocery store or plan anything special. From what we had laying around, including a few leftover items from the fridge, Joe cooked up an amazing meal. A fresh Asian veggie salad, spicy grilled salmon with basil/peanut sauce, and grilled spring onions and zucchini which we had over lovely, basmati rice infused with cardamom and other spices. And I thought he might be able to do something with the bread, cheese and tomatoes that I initially brought out...





I was surprised, given the years we've spent apart from them and given how our lives have changed, that we fell so easily back into our close friendship, talking and laughing in the garden and over dinner. It is good to have them back. And they loved Owen... and loved Owen... That always feels so good.




I wanted to make sure I mentioned another "growings-on." I am fourteen weeks pregnant - due on Valentine's Day. We are very excited for Owen to have a sibling and know that this will be good for him AND for us. We're doing most everything differently this time, including having our second at a hospital (Swedish) and finding out the sex of the baby the first week of September. These very much feel like the right decisions for us. While our current OB/GYN assures us that this is not a high risk pregnancy and that we should not at all expect any complications, what we've learned the last year is that Owen's injury most likely occurred during labor/delivery and we want to make sure that we have all of the available technology readily accessible during our next birth experience.

We leave next Thursday for Stanford and will spend a day and a half visiting with Mac and Margery (Grandpa Marshall and Nai Nai) before Owen is admitted to start the ketogenic diet on Monday the 25th. I know I've asked for this a lot this last year, but please send him your good thoughts. We really, really, really want this to work from him.

My next posting won't be until after Labor Day, after we return from Stanford, after Aunt Laura has come to visit (!!!) and after we've learned whether Owen will be having a brother or sister. I'm sure it will be a good, long posting.

Until then, enjoy the last rays of summer!

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"A garden is evidence of faith. It links us with all the misty figures of the past who also planted and were nourished by the fruits of their planting." - Gladys Taber

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

Six months.

Owen celebrated his six month birthday on Sunday. It seems as though simultaneously both a mere six weeks and a many six years have gone by. I'm sure all parents feel like this, like time both speeds up and slows down when on the parenting journey. I've included a couple of photos from Owen exploring his thumb. The first one makes me laugh... it seems as though the initial experience was not such a tasty one.




The ACTH wean continues to go as well as can be expected. No spasms but instead LOTS of sleep and quite a bit of vomiting. Our whole experience with the drug was fairly benign, so we see these "coming down" issues as a small price to pay when many babies have much more intense side effects throughout the treatment.

We have transferred Owen's care to Dr. S. at Swedish Hospital's Epilepsy Clinic (part of the Neuroscience Department) and had our first meeting with him on Friday. We want to have a continuity of care that, because it is a teaching hospital, is just not possible at Children's. The latter is an excellent care facility and Owen will still be seen there for various tests and screens. Dr. S., who recently left Children's for a position at Swedish, came highly recommended and our first meeting with him was wonderful. He took an hour and a half to become acquainted with Owen and ended the meeting by reminding Kelsey and I that couples with special needs children face great challenges and that we must always take care of our relationship, the foundation of which supports all three members of our family. We appreciated his willingness to apply both a human and holistic perspective to Owen's care. His experience is impressive, he exhibits both realism and compassion and his bedside manner is quite refreshing. We think he will be a great fit for our needs.

It is a glorious, sunny day here on the Kitsap Peninsula. I was out in the garden a few days ago and was reminded of how early spring arrives here in Western Washington. There are buds on the vine maples and on the red flowering currant, and the crocuses should be poking their heads out soon. We are looking forward to Spring, to getting our hands in the dirt again, and in the next couple of weeks, planting our chard, spinach, lettuce and kale. I am choosing to be positive about this upcoming year and hoping that it will bring much growth and rejuvination.