A long overdue update.

Owen is fully mended from the nasty stomach bug in mid-March which resulted in a two day PICU stay at Miller Children's Hospital in Long Beach, CA. It was a pretty scary episode - probably one of the scariest we've ever had. He caught the bug on the drive down to Hermosa Beach where my siblings and I had rented a house to celebrate my mother's 60th birthday (she drove down with the boys and I since Owen cannot fly - Kelsey and other family members flew). Elliot caught the bug two days later. Both boys had high fevers and Owen vomited fiercely - to the point of vomiting blood and becoming severely dehydrated within a short span of time. Needless to say, since returning home he has been doing fantastic - actually, better than he has in a long time, perhaps ever. This is likely due to the medication changes we've made recently and the fact that he's not had partial seizures in 2.5 weeks (we discovered what was causing these and as soon as we made the change, on the 16th of March, they disappeared). For those of you who didn't know, Owen's life (and ours) has been wrecked with partial seizures since late December. Some of these clusters of seizures were followed by periods of "passing out" for up to 15-20 minutes. Crazy, scary stuff. I'm happy to share what we learned about the medication Clonidine if anyone is interested.

Our life has improved tremendously since the abatement of the seizures. We did have a pretty demanding, busy week this week, with various follow-up appointments, blood draws at Seattle Children's Hospital (two, on two separate days), etc and are looking forward to getting into more of a - carefully orchestrated - routine starting next week. Owen is back to regular feldenkrais appointments - THE thing that has really helped him with his range of motion, turning his head to the left side, etc. He has these on Thursdays and had a wonderful, productive appointment today. It is obvious that when he is calm and feels good, he can absorb the sessions and integrate the movements. He was recently given a very cool, supportive yet stretchy, vest by his friend, Victor, in Seattle (see photos) whose parents have become close friends of ours. Thank you, Laura, Gary and Vic! This has helped him so much with the floor work and feldenkrais movement exercises we do and he's more able to sit in his chairs without needing a harness to keep him straight and supported. We are exploring options for him for school (1-2 days, one of which I will attend with him as a volunteer) in the fall and have an exciting possibility that we'll know more about in June.







Elliot is full of energy, knows quite a bit of sign language and uses it regularly (milk, eat, wind, rain, flower, tree, airplane, bath, etc) and now RUNS. He also loves to dust the floors (see attached photo). He recently began giving hugs to everyone, including his stuffed animal friends, and loves to give kisses to Owen (see attached photo). The stuff that makes your heart melt... He's precocious, independent, loving and totally fun. He and I will be attending a Parent-Child preschool program at the Madrona School on Bainbridge Island (a Waldorf school) on Fridays starting in September for the 2010 - 2011 school year. There are only 8 students accepted into each class and the Madrona School, located on Bainbridge Island, has an excellent reputation. Elliot and I will also soon, for the summer, be spending Tuesdays in Seattle while Owen stays with his Grandma and Grandpa Chalupa. I'm looking forward to reconnecting with close friends and getting back into a city that I love. Elliot will enjoy going to the zoo, aquarium, Children's Museum, spending time in the International District, at the Pike Market. He thrives off of new situations and is extremely social so these outings will be great for him (for BOTH of us). He and I recently went to the Point Defiance Zoo for a belated birthday celebration for him since Owen was having seizures the entire day of Elliot's birthday (February 4th) and required most of my attention. (I've included a photo of Elliot watching the sea otters.) Elliot and I attend Kindermusik classes on the island on Wednesdays - he's a born musician and especially loves the drums. We will continue this indefinitely as he really loves the class and the social interaction.







Kelsey will be taking Fridays off mid-April through mid-August and he, Elliot and I plan to hike, camp, backpack, bike - most of which Owen cannot do since he requires predictability and a regular nap schedule. Owen will stay with his his Grandma and Grandpa Chalupa on this day as well. We've been unable to do these things for almost three years and are totally giddy to get back out into the woods (can you hear me laugh with joy at the simple thought of a day hike!). We do hope to get Owen out in the Burley trailer, along with his brother, behind our bikes, a few times this summer. Janet (a.k.a. "GrandNanny") has been with us four days a week and has agreed to go to three days a week in exchange for watching Owen over a few weekends this summer. We will be going to Portland and to Vancouver, B.C. for two, three day weekends. We hope to also do a couple of single overnight camping trips in the Olympics. Oma (Leslie) and Grandpa Hethcote (Herb) will be taking care of the boys on Thursdays, spending time with Elliot in the morning while Owen and I are at his feldenkrais appointment and watching both boys in the afternoon while I have a bit of "me" time. Monday is my day with the boys, alone. We stay in our pajamas late, read books, make good food, take long baths, garden and have a grand 'ol time. It is great for me to have this time with them and to give them my focused attention. I don't take it for granted and am very protective of this day of ours.

The parting shot... Elliot on Lanikai Beach on Oahu. A long overdue vacation we took in January.



We hope this update finds all of you well, happy and as thrilled as we are for the warmer weather and longer days.

With love from our little corner of Indianola,

S/K/O/E

A little piece.

I've been working on and off the last two weeks on a little piece that incorporates some of the video clips that I've taken recently of the boys. I just finished my friend Pam's slide show a month or so ago, a photo journey of India, Nepal, Laos, Vietnam, Cambodia, Poland and Guatemala, using images she took on her 10 month trip, and was feeling the need to put together one of my own while I was still pleasantly warm from the whole experience.

The video was taken on Owen's iPod Nano (5th generation) - the quality is quite remarkable given that the iPod is about the size of a credit card.

Pam is a lovely woman who lives as she travels - intentionally, with thoughtfulness, vigor and compassion. She possesses a zeal for bringing people together that is truly remarkable. She has almost two decades of experience in public relations and marketing (for a major PR firm in Seattle) and is currently developing and running tours in both India and Costa Rica. She's also skilled in the realm of social media and, most recently, has decided to pursue (another) career as a life coach. Just drop me a note if you find yourself saying, "Hey, she's got what I need!"

Happy Thanksgiving!

Cuts.

It is extremely difficult to give Owen a haircut. He makes rapid, unpredictable movements, often arching or kicking his legs out or turning his head so fast to one side that it is almost impossible not to cut an ear off. So I don't cut it very often. Besides, he's got fabulous locks, silky and reddish-golden, and I really hate to cut them. But I did finally give him a haircut today as it had been several months and well, he's going to "school" now on Wednesdays so I thought I'd best spiffy him up a bit. It only took me an hour. One hour. What is totally heart-warming, heart-MELTING, about this photo is that he was looking right at me. Straight on.



I have also cut back on the amount of time I spend blogging about Owen. This is partly because we've just come through an exceptionally rough period and I've just not had the time. Now that we're out of this rough period and both boys are happy, (Owen smiling, eating and "laughing," and Elliot crawling, talking and almost walking), I so desperately want to spend every last bit of time with them - rolling around on the floor, laughing, being silly - instead of spending it with my nose in my keyboard. Time goes so fast and right now, I am having so much fun being a mother. It's totally dreamy.

Lastly, I'm not posting as much because, well, it's kind of nice to be a little more private and not blog about our every up and down and doctor's appointment, new medication and new intervention. I had to laugh, knowingly, at Elizabeth's post a few weeks ago about "compassion fatigue." Sometimes I find that I tire just telling everyone about it all, the minutia, the things that probably set us apart from others, knowing at the same time that EVERYONE has their ups and downs and that we're all in this together, paddling our boats through the sunshine and the storms.

So if you don't hear from us for weeks or months, please know we're okay. We're just being our "normal" selves. You can always connect with us by email (srm@tiny-giant.com) or through Facebook. We'd love to connect about food, films, kids, coffee, the changing of the seasons.... or just hear how YOU'RE doing.

Happy Belated Halloween!

Where oh where have we been?

So I have another post that I've been working on the last several days that relates to Infantile Spasms Awareness Week, which is October 11th through the 17th. But I just had to jump in and do a quick post today while the boys are sleeping.

We've been busy the last six weeks, which have included:

1. Owen going on Topamax.
2. Owen going off Topamax two weeks later.
3. Owen starting a wean off of Vigabatrin.
4. Owen finishing his last dose of Vigabatrin one month later. Yay!
5. Connecting with one of the co-founders of an amazing school in the Bay Area, The Avalon Academy, to learn about their education model.
6. Connecting with several moms via the blogosphere regarding schools, AAC (assistive and augmentative communication) devices, music therapy, etc.
7. Starting the process of exploring our options for school/education for Owen when he leaves the birth to 3 program in a mere nine months.
8. Writing a letter to Owen's neurologist to request that we start to wean him off of the ketogenic diet.
9. Taking Owen to an amazing naturopath in Seattle.
10. Connecting with a fabulous family in Seattle who have a son, Victor, who is very, very similar to Owen.
11. Obtaining a fantastic, life-changing, new piece of equipment, a Thevo Therapy Chair, from our friends at Exomotion.
12. Elliot getting the flu and running a temp and vomiting for six days.
13. Writing a letter to a new neurologist in Woodinville, asking him to take Owen on as a patient even though he has a two year waiting list.
14. Working with Owen's speech therapist to get him hooked up with switches so that he can learn cause and effect and, via the switch, ask for things like, "more water."
15. Connecting Owen with a feldenkrais practitioner in Port Townsend who has worked with the pediatric population for years. She's amazing!
16. Starting Owen on daily, small portions of lentils, carrot juice, cod liver oil (through tube), blueberries and vegetable broth - all except the oil, he loves and takes orally!

To summarize...

Vigabatrin, in the 16+ months Owen was on it, did nothing to control his seizures. He is AMAZING without it! He's alert, present, smiling, holding his hands in front of him, looking from side-to-side, scanning spaces, tracking. O is now only one ONE seizure medication! We will be trying a slight increase in this one, Keppra, to see if we can eliminate the remaining seizures. But so far, no new or increased seizure activity now that he's off of Vigabatrin. He IS a new little boy, however.

The Ketogenic Diet has been a life-saver and yet we are ready to try a wean. We were never interested in using it long-term. Owen has become increasingly intolerant of the high fat diet and has learned to retch and vomit up his formula. The diet is totally lacking in brain builders and in foods that heal and help him grow. He's weighed 20 pounds for the last nine months. Sure, we are anxious about the seizures coming back, but we always have the option of putting him back on it. He LOVES food, especially the fresh carrot juice, and handles it like a superstar. As a mother, it feels so amazingly good to start giving him foods that nurture his body and soul.

The Leemans! Victor is four and is so much like Owen. We connected with these fabulous folks through BL at Exomotion a few weeks back and just had dinner with them at their house in the Sunset Hill neighborhood of Seattle this weekend. Laura has been a shining star and has shared with me so many resources, including the name of the naturopath that Victor sees... Thank you, Laura!

Miroslawa Witalis is Polish and practiced as a physician in Poland and Switzerland before coming to the States where she received her ND at Bastyr. Her approach is rooted in science and her knowledge of neuroscience, neurophysics, biology, chemistry and physiology is incredible. We are seeing her to have her assist with getting Owen on foods that will help him heal and develop, to help with sleep issues and issues relating to bodily functions. More on this at some other point, but I've been searching for a naturopath who understands Owen, understand his history and who approaches him with sensitivity and thoughtfulness. I've finally found her!

Owen will transfer from the Birth to Three Program next July and his education will then be through the North Kitsap School District. We have so many things to think about relating to this... For another year or two do we work with private therapists (out-of-pocket expense) or have Owen go to a public developmental preschool? If the latter, here or somewhere else (which would probably mean a move for us)? What are the teacher-to-student ratios? Do they have the kinds of therapies and equipment that we want and that Owen needs? Many, many issues to consider.

We love Exomotion! We first connected with BL and Dutch, the owners, last year when we had Owen fitted for a Jazz EASyS stroller. We needed to have the stroller adjusted recently, so much so that I took it to them in South Seattle. This is where I (and Owen) fell in love with the Thevo Therapy Chair. They refer to the chair as "dynamic seating" as the back of the chair literally moves with the child. There are several "ribs" along the spine of the chair and along these ribs are dozens of small, articulating pads (think gecko toes) that move with the child. Instead of a rigid seat, which Owen ALWAYS fights, this seat provides the child with sensory input, even when they are sitting. Owen's response has been incredible. He no longer arches and fights when we put him into this chair, he is alert, awake, present and the hi-lo base allows him to be at floor level, playing with us or his brother or at the dining room table while we eat or at the kitchen counter as we cook. It has changed the way he perceives his world AND how others perceive him. I've included a number of photos below from our weekend stay with our dear friends (and family), Kevin, Kathryn and Lily. Owen was so accessible to Lily and to watch her interact with him and PLAY with him, read him stories and to watch HIM respond to her was so incredible. Thank you, Lily!

The other things on my list... well, I think they're self-explanatory. We've got so much going on right now and it all feels so good.

Coming clean.

We are coming off of fourteen really rough days, which just ended this last weekend. Saturday, to be exact. As Kelsey said, it reminded us of the first few months of Owen's life, an uncomfortable, unpredictable, unwanted blur of sleeplessness, fear, crying, crying, crying.

We decided a few weeks ago, before leaving for vacation, that once we returned we were going to try to eliminate the last remaining seizures that Owen has, a "mere" 6-10 as he falls asleep for naps and at bedtime. Just to be clear, that's upwards of 30 seizures a day. This, of course, down from the 120+ a day that he was having before he began the ketogenic diet, a year ago last month. So, in conjunction with his neurologist, we decided to try Topamax, one of the few we've not yet plugged into his little system. The reason behind this renewed enthusiasm for pharmaceuticals - we are desperately trying to get a handle on his discomfort. Read "fussiness." Unpredictable fussiness. Every day.

I'm a firm believer in that one's perspective shapes one's reality. So typically, when people ask how things are going, my response is usually very positive. Great, good, very well... Because, well, they are. I have an amazing family. Two adorable boys who own my heart. A husband who is my soul mate. A business that is thriving and that reflects my values. But the last two weeks, I've been telling the other side of the story, because, well, I am exhausted. S o m e t i m e s i t i s r e a l l y , r e a l l y h a r d. I wonder if people are put-off or if they silently remind themselves to steer clear or, if they feel like one of my close friends did recently when I told her how difficult life with Owen can be. She felt relief. She admitted that she knew, suspected, and that she felt relieved that I had actually come clean.

Owen's irritability stems from his lack of sleep, his seizures and his GI issues. We can't seem to get a handle on any of these, try as we might. We've had well-meaning individuals suggest natural remedies for irritability, for seizures, for spasticity, for sleep, for his tummy. Just to set the record straight... THERE ARE NONE. At least none that are accessible to us right now. Owen has a seizure disorder and his brain is not like most other brains and he is on the keotgenic diet and we can't give him supplements, oils or herbal remedies. There is no tincture that will make his body stop jerking as he falls asleep. I don't mean to sound callous, but that's our reality.

So Topamax didn't work. Owen cried and cried and cried during the day and screamed at night. We carried him around like a wooden plank, his little arms and legs stiff and stretched out, his fists clenched, the spasticity taking complete control of his body. So we discontinued it on Saturday. A few hours later, he couldn't stop smiling.

I hope he knows that we are doing the best we can. The best we know how.

Chosen.

I recently came across this piece online:

"Did you ever wonder how a child ended up with a specific mother? According to Sufi mysticism, the soul of the child looks down at the world and sees every soul that resides in every woman. When he finds the one that will be able to help him fulfill his life's purpose, he makes his choice. The relationship between the mother and child is no accident."

In the last two years, we've been told by numerous people that Owen "chose" us as parents. This notion, regardless of my belief in a literal translation of it, gives me comfort. His little family loves him so much.

Happy 2nd Birthday, Owen.

Good stuff.

I've been dreading this day for weeks, since the very day I scheduled the appointment, in fact. Owen had his first EEG in 14 months today, at Swedish Medical Center in Seattle. The last one was in May 2008 when we realized, after two LONG series of injections of ACTH into his little legs each morning, for weeks on end, that his infantile spasms had returned for the third time. That last time, last May, we were in the hospital for a day, for a full 24 hour video EEG. I'd say that was the longest 24 hours of my life, but since Owen's birth, I've had a few of those experiences.

He didn't fall asleep during the hour-long monitoring today, so they weren't able to record the half dozen or so spasms we know he still has as he falls asleep. I had to laugh when I heard the reminder message they left on my phone the day before, suggesting we keep him from sleeping at least four hours prior to the EEG so that he would be tired and so they could record the brain activity during the transition to sleep. If I only had that much control over when Owen does and does not sleep. Ha.

I cried this morning. I didn't let anyone see this except the owner of the crepe shop in Kingston. We got in line for the ferry, the boys had just fallen asleep, and I told Kelsey I needed to get some coffee. I walked into the crepe shop and I just couldn't hold back the tears. I was weeping as she handed me my change and I mumbled something about a birth injury and seizures and an EGG today. She said, "It is so hard to be a mother." Yes.

So I got my double Americano and walked and cried and walked and cried until I saw that the ferry was about to dock. I got back into the car and felt both a sense of relief, feeling as though I could make it through the day, and and urgency to grab control of the car and steer us home, away from hospitals and wires and the smell of that sticky stuff they use to ultimately make Owen look like Frankenstein.

The EEG stirs up so many difficult memories of Owen when he was just a few days old, electrodes all over his head, his eyes shut, Kelsey and I wondering if he was ever going to "wake up." The first EEG, when Owen was just a little over 24 hours old, showed very little brain activity. I told the neurologist to give it to me straight. He said is didn't look good - at all. Then Owen had a second EEG a few days later which showed a very small amount of improvement, but still looked bleak. He had a third EEG a few days later. Same thing. The level of anxiety, the magnitude of stress, having to watch the test, wait for the results, see the red marks and adhesive where they attached the leads... it was almost too much. You think you can't go through another one and then you do, because what choice do you have? I was always so eager to wash his hair and get all that horrible, ugly, sticky, smelly, invasive stuff off of my baby. He was, after all, just a baby.

Today's EEG went just fine. In fact, it went great. It revealed no new seizure activity. Owen was a champ, even giving them a few flinches at the waist, a few arches, a little lift of the legs, body movements that have been suspect by some. "Oh, there was a jerk," the tech would say. "Mmmm, he's just trying to get up a bubble," I would say. "He just had his milk and the Ketocal is so hard to digest. It just sits in his stomach and makes gas bubbles." "He just raised his legs," they said. "It's not a seizure. He does that when... Never mind. I just know. I'm his mom." They laughed. Owen's neurologist told us in our meeting with him a couple of hours later that Owen's EEG looked good. No seizures. He said that the movements, flinching, etc that the tech noted were not seizures. "I know," I said.

Happy Early Birthday, Owen. May you be blessed with more of the "good stuff" in your third year of life.