Happy Holidays from our neck of the woods...

Since the last posting...

We had a lovely, four day, relaxing Thanksgiving with Mac and Margery in sunny Bend, Oregon. It was such a treat to spend so many quiet days with them, enjoying good food, conversation, watching football (well, Margery and I were not as involved in the latter). A few days earlier, we had a fun turkey day celebration with Leslie, Herb, GG Mimi, Jen, Megan, Mary, Steve, Kathryn, Kevin and Lillian on Bainbridge Island.

Owen came down with his first major virus just before we left for Bend. He probably picked this up at Holly Ridge when he had his oral/motor feeding evaluation. He had a temperature of 103 and ended up with congestion and a cough. Kelsey and I both caught the bug and it hung around our house for three weeks, ushering us into our busy holiday season at GFC. With repeated coughing bouts lasting 1-2 hours, Kelsey spent a few nights on the couch as his hacking was so severe that it would shake the bed like a major earthquake. As is the case with kids like Owen, although he defied the odds and handled the cough/congestion just fine, the virus caused a substantial spike in his seizure activity and for the first two weeks of December, we struggled to get these back under control. Our saving grace ended up being the addition of MCT oil to his diet, nightly doses of Melatonin and a strict nap/sleep schedule. It was a rough few weeks, but by Christmas he was back to his (mostly) cheery self.

O actually has pudgy cheeks, legs and arms! I love that there is so much more of him to hold and cuddle. He loves to look at his high contrast board books by Peter Linenethal (Look Look! and Look at the Animals) that cousin Jen got for him a couple of months ago. They are perfect for where he is at in his visual development. We sit him on our lap, open these up and he gets wide-eyed, scanning the pages, devouring the high contrast images. We also now have a fun game that we play called "spiderhand." With O on his side or back, we wiggle our fingers a couple of feet above his head, moving our hand from side to side as he tracks it, slowly bringing it closer to his face while saying, "Here comes spiderhand." He loves it and smiles repeatedly in anticipation - a new development for him. We then bop the tip of his nose as spiderhand reaches his face. This usually produces a BIG smile. This might seem very basic for an 18 month old, and it is on the "typically developing child" charts, but for Owen, it is a wonderful achievement.

Kelsey very successfully managed another busy - fortunately, given the economy, even busier than last year - holiday season at Grounds for Change. Our staff was amazing and it was so nice for me to be able to have the flexibility to help out for a couple of weeks during our busiest time. We've been spending much of our vacation (during the annual GFC closure from the 24th through the 4th), sleeping in late, lounging in bed with O and spending time with family on Christmas Eve and Christmas Day. We did get an opportunity to have an adult overnight (DATE!) in the city on Sunday/Monday. Janet and Coop (Grandma and Grandpa Chalupa) did a practice run for when O's brother is born and took Owen overnight while Kelsey and I treated ourselves to a stay at the Inn at the Market and dinner with our friends, Sara and Joe.

We woke up early Monday morning to our water view of ferries coming into Seattle and the lit "Public Market" sign ready to greet the few who ventured out into the city between these two major holidays. We were scheduled to be at our ultrasound appointment at 9:00 am to peek in on O's brother at 34 weeks with a f/u OB appointment at 10 am. Although I've only gained 20 pounds, I've been telling everyone that I feel like I am growing a giant. Well, indeed... the radiologist had to come in afterwards to confirm the technician's measurements. We were a bit nervous at first, not knowing why he was doing this, and so asked what was going on. He proceeded to tell us that the baby's numbers were well above average, telling us that the measurements coincided with a 37 to 38 week old baby versus a 34 week baby. The head circumference, abdominal measurements, etc put this guy in at the 87th percentile. I laughed and said that I didn't know if this was a blessing or a curse. The radiologist and our OB doctor said that they only thing this indicates is that this little one is growing well. Our OB doctor said to plan on keeping the 8th of February (versus the 13th) as the due date. Based on this, I've only got 5 weeks left to go - thank goodness. All other measurements - blood flow through the cord/placenta, amniotic fluid levels - looked great as well.

I've posted some photos from the last month on Smugmug. These include some photos of the beautiful snow we had just in time for Christmas.

We love to hear from all of you and have appreciated the holiday cards and letters. Leave us a comment or send an email (srm@tiny-giant.com).

We hope that your holidays are great and that all of you have been able to cuddle your babies and enjoy your families.

Peace and love in the New Year,

Stacy, Kelsey and Owen

We knew he could do it!

Owen had his oral/motor feeding evaluation today at Holly Ridge, the EI center that he is enrolled in. He did FABULOUS! He was calm and happy - even during and after D., the speech therapist, used a rubber toothbrush in his mouth while she held him still (to gage his oral sensitivity). He has recently LOVED to have his teeth brushed so the fact that he did so well was not much of a surprise to me. I thought perhaps that he might feel a bit cheated since the toothbrush did not have the yummy, Weleda kids mint toothpaste on it, but if he did, he certainly didn't make a fuss about it. I did feel there was a good chance he would become unhappy when placed in their "feeder" chair, in a room that was foreign to him with sounds of very active toddlers emanating from the hallway. But he was a champ and smiled a couple of times at us before we even got started on the feeding part...

Just like at home, he opened up like a little bird each time I showed him the spoon and tapped him on his lower lip with it while saying "open" and "more." He happily took several spoons of applesauce (with butter) and marinara sauce (with lots of garlic and olive oil, of course). And as he typically does, he even smiled a couple of times after the marinara sauce. That's our boy. Yes, O loves food and the more garlic, the better. D. did note a "weak swallow," something that we assumed was the case given his CP and low trunk tone. Fortunately, according to D., this ability can be improved upon over time with practice. She was not worried about it too much because he swallowed several times with each "bite," swallowing all of his food, slowly, and not spitting any of it out. He is indeed very thorough and careful (and tidy) when he eats. D. said he did excellent - much better that she anticipated he would given how long it has been since he's taken the majority of his food orally - and that she was surprised at how much he enjoyed the food and how calm he was during the evaluation. She was very happy that there was no feeding aversion and no choking, coughing or noticeable aspiration.

Since aspiration can be "silent," before moving on to substantial oral feedings, and per the neurologist's request (he will not "approve" oral feedings or release oral feeding recipes that adhere to the ketogenic diet until we move forward with the next step), we will have a swallow study done at Children's Hospital in the Spring. D. explained the process to me today - they mix barium into a couple of his favorites foods that we prepare and bring for the study. O will sit in a feeder chair, like the one he used today, and I will feed him enough food for them to obtain images of the efficacy of his swallowing, but more importantly, images that will also tell them if any of the food is being aspirated into his lungs. The trick with kids like Owen is that they have trouble coordinating the closing of their airway with the opening of their esophagus when they swallow food. Any food that is taken into the lungs has the potential to cause serious infection. In talking with one of the experts on this at Children's a few weeks ago, a wonderful occupational therapist who has seen Owen twice and who is well known across the country for the work she does, it seems that Owen is not a very high-risk kiddo for this type of complication. Even if he does aspirate a bit of food, R. reminded me that we we ALL do this on occasion and since O has shown that he is very healthy, is not prone to infections, including respiratory infections, the risk relating to minor aspiration, (if he is aspirating at all), is greatly reduced.

Since I am pregnant and the swallow study involves a series of x-rays, we will wait until after February to perform this next test. Until now, we have been given the thumbs up to continue exploring tastes and helping O to improve upon his swallowing abilities.

After a LONG week of MANY appointments, this totally made my day.

All's well.

I apologize for once again not posting in several weeks.

We are all very well. Owen is stable and happy the majority of the time. There are still periods during the day when he is fussy and it takes a bit of juggling (from one seat to the next, to the bed, to the Ergo Carrier, to holding him...) to get him calmed. He is so much more aware of his surroundings and when sitting in his beanbag or Special Tomato seat, his gaze follows us across the room. This is such a HUGE milestone for him. He pauses and then turns towards the voice when someone he knows enters the room and he hears them. When I touch his nose and slide my finger from his nose to his lips then to his chin and say "Where's that smile," he smiles. He is, in fact, becoming so much more aware of himself and his surroundings that Kelsey and I feel that most of his fussy periods now are a result of his frustration at the lack of control he has over his body.

He vocalizes A LOT. His sounds are often very throaty and we can tell he is trying very hard to make the whole system work. He just can't get the vocal cords to operate like he wants them to. We encourage these sounds and let him know that we hear him and understand. It is the best we can do for now - to give him the confidence and encouragement he needs to keep trying.



When he is calm, he's full of smiles. It really gives us a sense that he is happy and that he loves us. It is difficult when you don't have this love reciprocated in the usual, tangible ways - through eye contact, smiles, coos - as we experienced for the first several months of O's life. What's funny is that I know O is looking at me when he looks just above my head or just to the side of my face. This is how it is with kids with CVI - they "see" better out of their peripheral vision. So when he looks at the top of my head, or my ear, I know he's actually focusing on my face. This has become "normal" for me - I don't even give it a second thought anymore.

O's neurologist has a new nurse - she's fabulous. Knowledgable, responsive, kind. She told me the other day that I must remember that Owen is a child with seizures, not a seizure-child. She reminded me not to let the seizures define him. This was in response to me letting her know that after our December 1st appointment with Dr. S for a f/u visit, we were going to be taking a few months off from appointments, tests, etc. so that we can have some peace at home both before and after his brother is born. We COULD have an EEG to see what is going on from this diagnostic stand point. We COULD have a swallow study (video flouroscopy) done to take a look at the efficacy of O's swallowing. Instead, we will continue to have blood draws each month at his pediatrician's office on Bainbridge Island to make sure he is still tolerating the keto diet well and get his weight checked every so often to make sure he is gaining well, but not too much, too fast. We will pass on all of the other non-emergency tests and appointments for a few months. I KNOW that if Owen could talk, he would say that he is just fine with this plan.

We DO have an oral/motor feeding evaluation set-up at the EI center this week. This will be performed by one of the Occupational/Speech Therapists there and will give us a better idea of Owen's oral feeding tolerance and abilities. Honestly, I think he'll do great. We've been giving him small tastes of keto-friendly foods (a mixture of unsweetened applesauce, butter and cinnamon, for example) and he chews and swallows slowly, but with ease and without choking or gagging. Sometime in late Spring, we'll have a swallow study done to ensure that no food or liquid is being aspirated. Once he's passed that "test" with flying colors, we'll work with Dr. S to incorporate some oral feedings into his day. Mealtime is such a social event and food (and cooking), such an important part of our lives - we want O to be able to share in these joys as well.

The ketogenic diet is still working great.

I've been in full nesting mode the last few weeks - cleaning, cleaning, cleaning, painting rooms (no VOC paint), organizing and rearranging. Every surface in our house has been wiped down and every drawer and closet cleaned out and organized (a big thank you to Janet for all of her help with this). I'm trying to get many appointments out of the way before the holidays AND in anticipation of my February 8th due date. This week is a busy one with appointments each day - EI f/u, PT, cranial-sacral, OB/GYN, oral/motor evaluation. We are looking forward to spending an early Thanksgiving on Bainbridge Island on Sunday with the Marshall/Hethcote/Kelly family. Next Wednesday, we leave for Oregon for five days to spend the actual Thanksgiving holiday with Mac and Margery (Grandpa Marshall and Nai Nai). Upon our return, we'll jump head-first into the busy holiday season at GFC (we have yet to feel any major effects from the economic mess and hope this continues) until we close for the holidays on the 24th. We've decided to lay low in January and work on getting lots of sleep, finishing up projects at home and staying relaxed. It will be good for the three of us to have some quiet time together before O's brother arrives.

I was reflecting this weekend, on my sentiments from this time last year - my posting included a reminder to give thanks for your children, their health, your spouses and lovers, your family, your friends. I received a call from my friend, Angie, this last Saturday. A friend and former co-worker of ours, in her late 50s, passed away unexpectedly last week. I had just spoken with C. on the phone a few months ago. Her daughter had been trying to have children for years - with many losses late in her pregnancies. C. was so excited when she called me - she was finally a grandmother. So once again, at this Thanksgiving, I am reminded to be thankful for all that I have - right now.

Happy Thanksgiving to you all!

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

----

"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

As promised...

The photo of my sister, Laura, taken on October 28th, 1982, with the gigantic pumpkins she grew that year on our two acre parcel outside of Iowa City, Iowa.


Happy Halloween!

Ooooooo, baby.

I am so excited.

Janet and I (and Owen) had a chance to take a look at the Burley D'Lite in person yesterday at REI. I have spent the last few months reading up on double bike trailers. The D'Lite also converts to a pull-behind with skis for our annual Methow Valley x/c ski trips and has consistently received excellent reviews from parents, including a few who have kids with CP. One such parent said, ""I recommend this product to anyone in the market for a trailer. I use this for trailing, walks, zoos, parks, jogging. I am a stay at home mother that has a child with cerebral palsy that cannot do anything independently (including sitting). I wanted her to experience bike riding and needed a safe, secure, and comfortable ride for my daughter. This is the ONLY product on the market that I would put her in."

I am NOT being paid by Burley to post this - I swear. It's just that we LOVE to bike, love to travel, Owen loves to ride/move and this trailer will get all of us out of the house. It's a double-seater and holds two kiddos for a total of up to 100 pounds. We hope to get this sometime this winter and will retrofit it with the "Baby Snuggler" padded harness/slings for both kids. This kit is used for smaller tikes who have less head/truck control and will really help to secure both babes in their seats.

We've looked into trails (some of them nice, flat railroads that have had the tracks pulled up and converted into bike trails) across BC, on Vancouver Island, in the San Juan Islands, in California and here in WA State. So many possibilities! Owen (and his brother) will be able to hear the birds, smell the fresh air and see the beautiful sights as we all cruise along on our wheels. Now we just need to get our road/mountain bikes down, dusted off and tuned up.

Owen has really been enjoying his Ergo Carrier the last three weeks - so much so that sometimes this is THE ONLY place he wants to be. And I love it. After so many months of seizures, sleeplessness and fussiness, it is lovely to be able to take him into a public place like REI (where we were for two hours yesterday) and have him calmly experience the sights and sounds. He even managed to fit in a nap while we were there. I have joked that I am going to keep him skinny just so I can continue to carry him around and keep him close to me.


We met up with my mother's cousin and her family (Mary, Tim, Madison and Sarah) at the Puyallup Fair a couple of weeks ago. My mother grew up raising livestock for 4H and all of us, having grown up in Iowa, enjoyed experiencing the quintessential summer reminder of our roots. Owen's favorite, hands-down, was the cow barn. He immediately went quiet and got wide-eyed when we entered. The beautiful, mocha-colored Jersey cow that we stopped next to was nice enough to let out a timely, long, sweet "moooooo." Owen loved it! I know the smell was also new and wonderfully intense for him - the warm hay mixed with a bit of cow funk... I wanted to include the strip from the black and white photo booth that he and I got cozy in at the fair. Me and my sweetie... well, one of my sweeties. I have a few of these strips of Kelsey and I to document the booths we've cozied up together in, in our almost 19 years of couplehood...

I've also promised some that I would post ultrasound photos, so here they are. The ultrasound was on September 11th, so a full three weeks ago. My pooch continues to grow, and Owen's little brother continues to kick. No more of the barely noticeable, gentle movements. These are now the unmistakable bumps and kicks of a frolicking, growing baby within my belly.

Reflections.

We began this blog a year ago this month...

A year ago this October, at four months of age, Owen had his first bout of seizures, a rare and serious form of epilepsy known as infantile spasms. We were terrified when we recognized the distinctive movements as both Kelsey and I had read online and been warned by Owen's first neurologist, that they were very difficult to treat and almost always indicated a serious underlying problem.

Last October, Owen was plagued by severe reflux and would projectile vomit 4-5 times a day, losing up to a third of his much needed calories. I changed both of our clothes at least twice a day and did dozens of batches of laundry each week. When awake, Owen would cry incessantly. He was confused, scared and trying to make sense of this world that seemed to him, so overwhelming. (A bit of a side note: Owen's fussiness is pretty standard for children who have experienced a major brain injury. I feel confident now saying that it isn't part of his underlying personality, it is an expression of his frustration at attempting to sort out a very confusing world.)

October 2007.



October 2008.



Last October, Kelsey and I were both struggling to adjust to our role as new parents which, as others can attest to, is a big deal by itself, even without all of the layers of complications that Owen's injury brought with it. I was having these feelings that I believe most new parents do, that my autonomy was completely gone. No longer could I go anywhere without being responsible for this new life - and Owen's fussiness, seizures and reflux made it impossible for me to go anywhere with him except to his appointments. Janet had just started helping out one day a week last October and was surprised at what it was really like to try to manage Owen's needs throughout the day. She still shakes her head, herself a mother of three and says she "had no idea."

I rarely left the house last fall, and spent my time sitting with Owen during and after his feedings, trying to help him keep everything down. We sat for HOURS each day. I remember the disappointment when he would start to retch and most everything would come back up. We felt so helpless. Days would go by and I would realize that I had not left the house in a week. I felt disconnected from friends and community although both reached out and attempted to stay in touch.

Overnight I had to adjust to the fact that I was no longer a "professional," a full time business owner, communicating with our customer base across the country each day and marketing our programs to other potential customers. I was no longer able to talk with dozens and dozens of people a day about something I helped to grow, that had become my passion and that I had poured so much of my time, blood, sweat and tears into. This separation and transformation was difficult and would take months to adjust to. It really started to hit me last October when I knew we were entering our busy season, knowing that my help would have been welcomed, but realizing that I could not juggle these two lives as I had thought I would do prior to Owen's arrival.

Last October, Kelsey was attempting to manage Grounds for Change and not only deal with the busiest season of the year, but trying to catch up from the two weeks he spent at the hospital and then the short hours he put in after Owen came home, attempting to keep me from going insane. We were both tired, stressed, and scared.

I find myself reflecting on all of this, not because I feel we are "in the clear", because we're not. Our life has permanently changed and has been infused with challenges that most parents will never know or understand. I am reflecting because as I recently discussed with my friend, Angie, who herself has experienced tremendous challenges the last few years, and who could relate to my sentiments, I can now look back on the last year and say, "We got through that. It was incredibly hard and scary and it is behind us now." It IS behind us. The constant fussing. The vomiting. The total uncertainty. The struggle to shift identities. I think back to the constant weight checks, visits to the pediatrician, the daily ACTH shots, the NG tube, the PEG tube surgery, the MRI, the myriad EGGs, the GI tests and appointments, the in-patient stays for neurological and developmental assessments and the day our suspicion that Owen was visually-impaired was confirmed (one of the worst days of my life). All of this is behind us.

My new role as a stay-at-home mom, which a year ago was so foreign to me, is now a shoe that really fits. In fact, I love it and am thankful everyday that Kelsey and I were able to build Grounds for Change to a point where I can be home with our children. I take walks with friends, fit in a bit of yoga here and there, garden, cook, can and am able to get to all of the household chores and errands that we never seemed to have time to deal with when both of us were working at GFC. Most importantly, I am able to devote the time and energy to Owen that he both requires and deserves, advocating for him on the phone, at his appointments, connecting with other parents who face similar challenges and who are willing to share their stories and advice. I get to be with him each morning when he wakes up, and sit with him in the rocking chair while I wake up and sip my cup of coffee, watching him stretch and come to life. Although it is not a path I envisioned for myself prior to Owen's birth, I now realize that I am so fortunate to have this opportunity.

And Kelsey gets to be the business owner that he told his parents at an early age he wanted to be. It's not that we didn't work well together at our little business, but I believe that the separation of our roles has enhanced our respect for each other. I am amazed at what Kelsey can juggle each day and at the thought and attention he puts into all of the business decisions he makes on a regular basis. He tells me that he is thankful for the work I do at home, caring for Owen and managing the household miscellany, making it easier for all of us to enjoy our time together as family.

So as I reflect on the past year, I realize that we've come so far, made great progress and I am thankful we are where we are at, this October.

Thank you to all who have checked in on us and who have been so supportive of our family this last year. Huge love to all of the mamas out there who I've connected with since launching this blog, who tell the stories of their sons and daughters with love, grace, honesty and who continue to give me the strength to believe in the possibilities.

----

"Life is either a daring adventure or nothing at all. Security is mostly a superstition. It does not exist in nature." - Helen Keller

Our traveling friends.

We have two friends, Pam and Cinnamon, each on two separate journeys across various parts of the globe. Pam left her long-standing career at Parsons Public Relations, THE best, woman-owned and operated, sustainable, green business-focused PR firm in Seattle (in my humble opinion) on sabbatical in early September and will be traveling for 10 months throughout Nepal, India, Laos, Vietnam, Poland (to meet family), and then parts of Central America. Cinnamon, a single mom, wanted to give her two children, both in their early teens, an experience living and working abroad. They left in August and are traveling through various parts of South America for a year.

And we continue to enjoy Owen (whose seizures are still down to just 6-10 a day), grow babies, bake bread, can preserves, grow our sustainable business and enjoy our life here in Indianola. That said, the current situation with the economy and the mortgage/lending crisis has us very, very worried. And I continue to dream of the possibilities for my children, this country, and the planet with an Obama/Biden administration.

A good time for good things.

We've had several people ask about Owen the last week or so, saying with a bit of hesitation that they've been checking the blog but haven't seen any new updates. I admit it... I have been a bit hesitant to post, not because things aren't going good, but because things are going great. With so many unsuccessful attempts at controlling O's seizures, I am cautiously going to say that the diet seems to be working. Actually, right now IT IS WORKING. His seizures continue to be down to just 6-12 a day. Before we left for Stanford, they had crept back up to over a hundred a day. He continues to tolerate the diet perfectly with no adverse effects. We check his urine every day for ketone levels, pH levels, specific gravity (hydration) and blood (there is a slight risk of kidney stones which is detected by blood in the urine). All of the numbers have been perfect. He is sleeping much better - we ALL are sleeping better - and he is overall much more content. All of the hours on the phone since June, the coordination during the weeks leading up to the trip, the travel time, the hospital stay - it was all so worth it for the peace that Owen is currently experiencing. We are hopeful that it will continue.

We had the 17 week ultrasound today to peek in on Owen's sibling. Although I am a full 17 weeks as of today, all of the measurements came back at 18 - 19 weeks gestation, which means that the baby is growing very well (despite the fact that, according to the scales at the OB/GYN's office, I have only gained one pound in the last five weeks). Our OB/GYN said that based on the results of the ultrasound screenings, my blood draw results and my specs (weight, blood pressure, etc) all of our "options" are open, meaning that the pregnancy is healthy and an unmedicated birth is still a possibility should we choose this route. She wants to do another ultrasound at 32 weeks just to make sure there is adequate blood flow through the cord and an appropriate amount of amniotic fluid - two things she wants checked as precautionary measures. We so appreciate her attitude - not overly concerned about performing a lot of unnecessary tests, but especially watchful and attentive to this pregnancy given O's history.

During the ultrasound, the baby was kicking and bouncing around all over the place, just as O was at the same age. We saw legs, arms, fingers, toes, a lovely head and spine, all sorts of organs, including the four chambers of the heart and... the equipment that can only belong to a little boy. Yes, Owen will be having a little brother come early February (my new due date is February 8th). We had no preference at all one way or the other, but it is fun now to be able to talk about "him." And I have to admit that I have become quite smitten for my first little boy and excitedly welcome a second. I guess it is the "mamas and their boys" thing that I've heard people talk about. Or perhaps it is just that I love being a mother? Kelsey is thrilled that finally, the boys will significantly out number the girls (including Dutch, the score will soon be four to one).

We had an excellent visit with Laura and have added some photos from her stay as well as from our trip to California/Stanford. Included also are some photos of the fate of the 80 pounds of roma tomatoes that Janet and I made into red sauce and roasted tomatoes earlier this week (which we purchased at the Puyallup farmer's market for $70!). They are now sitting quietly in the freezer, all 50+ pints, along with the 50+ pints of pesto and several quart bags of frozen berries from our garden. Bring on the winter rains!

I am feeling great now that I am entering the 18th week of pregnancy and all three of us are enjoying being home again. We've been busy catching up and getting back into our routines the last couple of weeks. We are so grateful and appreciative of the incredible support we have received from all of our family this last year, but especially the last several weeks. We had so much support for getting O started on the keto diet and for making the trip to Stanford and when we told all of our family the news about our pregnancy, not knowing fully what the overall response would be, we were amazed. The excitement, hope, encouragement, support and love came from every direction. We are so fortunate and blessed and their support continues to enrich our lives.

The weather has been glorious since our return - 70 to 75 and sunny - and the forecast for as far as they can predict is for more of the same. The big leaf maples are turning, the pumpkins are almost ripe (bring on those recipes!) and the air smells of fall. It is our favorite time of the year.

Peace and love,

S/K/O

Homeward bound!

It is 9:00 am and we are in the final stages of packing up our hotel room. O tolerated the 100% ketocal PERFECTLY and is about to start his second day of the full strength formula. Dr. Olson, the NP and dietician were all so surprised yesterday morning to read the nurse's report from Tuesday indicating that Owen had no problems whatsoever with the 2/3 strength formula. As I've mentioned, this is very atypical for kids who have a history of severe GERD. And now he's passed the 100% test and we are free to leave for home.

Last night was so great. Owen had one period of about twenty minutes where he had probably 10 seizures, but on two other occasions, fell asleep with NO seizures. This has not happened since early May. We all got about seven hours of sleep. Remarkable.

I'm always so hesitant to feel such great joy and relief when things seem to work for Owen's epilespy but, you know, I have a really good feeling about this diet and believe that it will work.

And now our sights are set on Indianola...

With much love and appreciation for everyone's support,

S/K/O

Our little peanut.

Owen's metabolic study yesterday morning revealed that he is running at 170% of what his age/weight calculations predicated - so almost double what would be typical for a kiddo his size and age. It was a perfect study - he was sleepy and laid under the ventilated hood, still the entire time while they took measurements of oxygen consumption and carbon dioxide production. The numbers are quite accurate and give us a really good idea what his RMR (resting metabolic rate) is. This number is important in the keotgenic diet since we want him to gain weight on the diet while also remaining in a state of ketosis. This number surprised even O's dietician and is obviously why we've not been able to get him to gain much weight the last three months with the formula and volumes we were using from our nutrition consults at Children's.

After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!

We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.

Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.

O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...

Sleepy head

It is 4:15 in the morning. I am laying on a plastic cot in Owen's hospital room which he shares with a 14 year old girl, Louiza, who just recently had a tracheotomy due to her increased inability to clear her upper respiratory pathways. Louiza also experienced a birth injury and has a wonderful, loving family, including a younger sister (by two years) who doted on her when she came to visit today. Louiza's mom, within an hour of us settling into the room, had reached out to us, told her story, written down the name of a close friend in L.A. who has a child who has successfully been treated with the ketogenic diet and offered any support she might be able to provide while we are here. This is how it is in this newest community that we belong to.

I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.

Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.

Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.

We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.

Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...

Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.

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!

--

"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

Sweet things to share...

1. A boy and his uncle.

2. Three Beautiful Things.

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...

--

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

--

One year old...

We wanted to share some photos from Owen's birthday weekend...

Happy Birthday, Owen!

Here's a little something in your honor...

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.

----

"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.