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

Gains and Losses.

I had a great birthday week, gaining a year on paper on Thursday. At thirty-six, I am now closer to forty than thirty yet still feel somewhat closer to, say, twenty-eight. Kelsey surprised me with a stay at the Chevy Chase Beach Cabins on Discovery Bay (outside of Port Townsend) last weekend. We've decided to make this stay an annual family ritual. Cabin #4, the grounds, the staff and owners and the views were delightful. I had two birthday lunch dates early in the week, a combo birthday dinner on Wednesday night and a full day of fun in the city with my hubby on Thursday. If you live in Seattle, or are visiting and want a selection of seasonal foods, woven into dishes that will truly awaken your palate, you must check out Restaurant Zoe. Seriously yum. I don't think I've ever celebrated my birthday seven days in a row, but hey, who's complaining? Last year on my birthday, we received the welcomed news that we'd be able to take Owen home the next day after a LONG, 12 day stay at Tacoma General. We spent my birthday packing up our guest room at the hospital and preparing to take Owen home. Stark difference.





We had to put our cat, Mo, down on Sunday after 14 1/2 years. It was terribly hard to say goodbye after having to do so to her good friend, Siva, just a couple of months prior. Mo had late stage kidney failure and had dwindled to a mere seven pounds.

Owen is on a new seizure med, Keppra, and so far, it is working very well in conjunction with the Vigabatrin. He is sleeping great, smiling all the time and seems quite peaceful. His vision has improved over the course of the last few weeks and he now smiles pretty consistently at two things... his daddy talking "silly" to him and me quietly smiling at him from his preferred right side.

Owen also got his first wheelchair a couple of weeks ago and now has his own, stylish set of supportive wheels.



We leave August 22nd for Stanford to get Owen started on the ketogenic diet. He will be admitted on the 25th and stay through the 27th. We'll be fitting in two quick visits with Grandpa Marshall and Nai Nai in Santa Rosa on the way down and on the way back up, before racing back to Indianola to connect with Aunt Laura who arrives on the 29th.

Not much else to report and perhaps this is good? The garden is doing great - we have a basil forest (in preparation for Kelsey's fall pesto production), our tomatoes are ripening, we finally have cucumbers and squash and are going to have a bumper crop of heirloom sugar pumpkins which we'll distribute throughout Indianola.

Hope that the rest of you are enjoying your summer...

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We can't change the cards we're dealt, just how to play the hand. ~ Randy Pausch

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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

Odds have it.

We had Owen admitted yesterday morning - at 7:30 am - for a 24 hour EEG/video monitoring. His seizures continued to worsen over the weekend, with his/our sleep diminishing to 2-3 hours a night.

I really thought that the activity we were seeing was that of myoclonic seizures, given their manifestation, but the interpretation of the 120+ seizures over the course of 21 hours revealed that the infantile spasms are back. Ugh.

Owen and I stayed overnight at Swedish Hospital, Kelsey stayed in the city with Kevin and Kathryn. Janet came for the first day, Leslie joined us for the second. Only one parent is typically allowed in the rooms on pediatric units, something that I'll never understand. I would trade sharing a single, worn out, sunken-in-the-middle cot with my husband for the support and comfort that having him close provides. Owen and I slept for a total of 45 minutes the entire night. Seizures and a heightened awareness of unfamiliar surroundings kept him up most of the night.

Owen and I have slept a total of about 21 hours in the last seven days - Kelsey only a handful of hours more. I do my best to try to buffer Kelsey so that he can get up at 5:00 am each morning to get into GFC somewhat refreshed. Lately, however, Owen has been most comfortable sleeping in bed with us - Kelsey's sleep then directly affected by the bouts of seizures. Neither one of us minds, however, as we are warmed by the fact that Owen knows we are there and is comforted by being with us. He truly relaxes and feels safe - you can sense it in his body language and the fact that he much more readily falls asleep, despite the seizures.

We returned home this afternoon, weighted down with the recurring spasms information. I find that I am not surprised, but certainly saddened. Owen has endured over 80 ACTH injections, disruption to his overall sense of well-being, a hindering of any possible development since last October (six out his ten months of life) and six figure hits to his lifetime health insurance maximum because of these seizures and associated treatments.

We are moving forward with Vigabatrin - only available in Canada/Mexico and not FDA approved in the States. This is one of a handful of reasons we chose Dr. Sotero as he is willing to prescribe this drug which is the treatment of choice - before ACTH - in Canada, Mexico and Europe. In the next few weeks, we will also be moving forward with the ketogenic diet which we are very excited and hopeful about. There have been recent articles in the Seattle Times and New York Times outlining the benefits of this diet. We will try to work through Children's Hospital for this as there are two nutritionists on staff there who are skilled with this highly precise diet. There are Bibilical references to the diet and it's use became highly touted in the early 1900s on the East Coast, falling out of favor when certain pharmaceuticals like phenobarbital, a less effective treatment, came on the scene in the 1940s.

We will continue to keep you all in the loop via the blog and, in the meantime, appreciate any toe and/or finger crossing, sacrificing of chickens, saying of prayers, giving of blessings...

On a totally unrelated note, my cousin, Jesse, was out here last week from Iowa City to attend the Sasquatch Music Festival with my brother over the holiday weekend. Jesse, we loved having you here for a day before you left for The Gorge. We missed saying goodbye due to our stay at Swedish. We love you very much. You, and your music, are such a gift.