Sunday, October 26, 2008

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

3 comments:

karengberger said...

Thank you for this wonderful update. I am glad that things are going so well for all of you.
The cord blood banking is such a great idea, and it has potential to be useful to others, if you don't need it, such as for transplantation to cancer patients (as you may already know). I hope your posting will spread awareness that this can be done, and is worth the effort. I wish I had known about it "back in the day."

I love reading about your garden, as I have a "brown thumb," and love to learn vicariously about gardening. Maybe someday I'll turn my brown to green. You are inspiring! God bless all of you and your wonderful company, too.

Bird said...

That's quite a post.

I have to admit that you seem like a more evolved human than I. I SO badly wanted to grow my own vegetables and then I did have a small garden. I completely abandoned it when the temps went over 90. I am, perhaps, destined for indoor gardening?!?

I'm intrested and happy to hear about Owen's improving vision. I have to admit that I've reached a point where I wonder (to myself mostly) how much vision loss in these kids is related to muscle control. Charlie's eyes only looked left for a few months (and were MUCH worse while he was having seizures). It has slowly improved to the point that people who meet him are SO much less aware of it. I suspect that this is improvment in his ability to control those eyes.

Shannon said...

Every time you talk about Indianola and the people and community there, it makes me want to pack up my house and move there. Port Orchard simply does not have much of what you have there.