Happy Birthday to you...

Wow. Three years...

Joy. Heartache. Wonder. Courage. Hurt. Fear. Amazement. Awe. Uncertainty. Doubt. Growth. Change. Adoration. Love. Reflection.

Being a parent. Universal, yet each experience, totally unique.

Happy Birthday, sweet Owen.


Homemade cupcakes c/o Grandma Janet.



Elliot and I giving Owen a long, birthday-eve massage.



Alba Botanica Hawaiian Coconut Milk Body Cream. Nothing but the best... Do you think he likes it?



Catching the cool breezes on vacation last week on the Oregon Coast (Thank you, Great Aunt Connie!).


With Dad and Elliot at Girabaldi Fisherman's Terminal.

Our work at home.

Thank you all for the wonderful feedback from the last post. I hope that those of you involved with feldenkrais (or other interventions that work for your child), will continue to share information and valuable feedback so that these posts can serve as a resource for other parents.

I also wanted to make sure to mention that feldenkrais is very much for adults as well and can be beneficial for individuals with Multiple Sclerosis, for those with Fibromyalgia, Stroke and Parkinson's and also for improving balance and mobility in older adults.

Some of you asked to see what exactly we are doing with Owen, so as time allows (as I either juggle the video camera OR I have someone else to help hold it), I will post short clips of some of the work we're doing at home. This will be a good motivator for me as well so that I can document Owen's progress.

Here are a few clips from today...

In these first two, I am mimicing the play and exploration that babies do with their hips, legs and feet. I am gently grasping Owen's ankles and feet, and slowly lifting his hips off of the ground while encouraging his hands to touch the opposite knee as his legs come towards him. I try to work in as much cross-lateral movement as possible. (If you imagine a line going down the middle of your body top to bottom, anything that crosses over that midline can stimulate all four lobes of the brain. Repetitive cross lateral movement, such as crawling, also strengthens and integrates the left and right brain.) I am also crossing one foot over the other knee and encouraging him to bring the lower leg up so that it lifts both legs off the ground. Owen was doing this on his own in the last segment of the video that I posted on June 2nd - which is why you hear me cheering him on at the end.





One of the "basics" that we've learned from both Ingrid and Marsha is the importance of "planting" Owen's feet whenever possible, to provide the opportunity for this feedback through his feet, legs, hips and spine.



Here is an easy exercise that we do multiple times everyday:



This last one is a nice way to keep the spine limber and provide sensory input to each side of the spine and rib cage. The key is slow, gentle articulation of the spine, alternating sides and moving up and down the rib cage. We've been doing this exercise for well over a year - you can tell how much Owen loves it. (I apologize for the noticeable heavy breathing in this one and the first one - I was literally holding the video camera in my mouth for some of these. Thank goodness for the iPod Nano.)

Feldenkrais, feldenkrais, feldenkrais!

Owen is currently working with two feldenkrais pracitioners, one on Bainbridge Island and the other based out of Port Townsend (about 45 minutes away from our home in Indianola) and has been actively participating in this "somatic education" since October of 2009. Our goal is to eventually have him in feldenkrais appointments twice a week, perhaps sometime this Fall. For the time being, we are at appointments just once a week due to other commitments both boys have during our busy weekdays. We also work with Owen at home each day - anywhere from 15 minutes to an hour, once or twice a day - as his mood allows.

(Important note about feldenkrais: It is all about allowing the participant to lead the way. The movements are not forced and should be enjoyed. For most children, sessions are kept short, from 15 to 45 minutes so that the child does not become overly tired or frustrated. Multiple, short, daily sessions are better and more productive than longer sessions, thus the importance of caregiver or family involvement at home.)

Currently, Owen sees Marsha Novak once a week on the island and Ingrid Musson once a month when she travels to the island from Port Townsend to see clients on Bainbridge Island and the Kitsap Peninsula. Our introduction to feldenkrais was with Ingrid in Port Townsend. She is really the person who laid the groundwork and set the path for Owen and his success with feldenkrais. She has an incredibly sensitive touch and deep understanding of infants and children with movement/motor issues.

We learned about Marsha and her recent graduation from the Anat Baniel Method training course through my chiroprator, Mari Ellingsen, who is also the very gifted woman who provides Owen with his cranial-sacral sessions (also on Bainbridge Island). I have been seeing Mari for almost ten years and when she mentioned her friend and cohort, Marsha Novak, who was interested in working with Owen, I was both excited and curious as Bainbridge Island is closer to home and closer to Owen and Elliot's grandparents, Leslie and Herb, who now care for Elliot each Thursday when I take Owen to see Marsha.

Both women, Ingrid and Marsha, are incredibly talented, compassionate and completely connected with Owen during his sessions. Each brings their own experience, and gifts, to their practice. Ingrid worked in a birth to three program for ten years, as an early intervention physical therapist. This experience with babies/children brings to her feldenkrais work, a core understanding of the necessary sequential milestones and associated developmental movements. And according to her resume, in the last 29 years she has "...accumulated over 2000+ hours of continuing education, which include Feldenkrais, visceral manipulation, cranio-sacral therapy, Mulligan’s mobilizations, orthobionomy, soft tissue release, neuro-structural integration, Total Motion Release and therapeutic healing touch." She has worked as a physical therapist for almost 30 years and as a trained feldenkrais practitioner for over 15 years.

Marsha has been practicing physical therapy since 1985, an impressive twenty-five years, and is well-known and respected on Bainbridge Island as both a physical therapist and feldenkrais practitioner. She became a Guild Certified Feldenkrais Practitioner in 2003. She recently completed the Anat Baniel training and is a certified ABM Practitioner. Her passion for feldenkrais and her drive to assist children like Owen in achieving milestones and to help make possible what others might believe to be impossible, is evident in each session we have with her.

I've included a couple of recent shots of Owen working with Marsha. (Note he is looking to the left in the first photo and laying on his right in the second - I will discuss the significance of these positions later in this post.):






Although currently, feldenkrais is not a "conventional" intervention for children like Owen, neither is it one without its scientific, validated, measurable merits. It has the ability to create significant, almost immediate, percievable changes in the way that people move and feel, including children with severe motor impairments such as Owen. What is key for Owen is that in addition to increasing overall PURPOSEFUL movements, feldenkrais helps to transform existing, random and mostly uncontrolled movements into productive ones.

What Owen was NOT doing as of October 2009/What he IS doing since feldenkrais:

* Turning his head consistently to the left, towards light, sound, stimulus. For most of the first two years of his life, Owen NEVER turned his head to the right.

* When lying on his back, lifting his hips up from the floor/bending his legs in the "frog" position and moving each independent of the other. Prior to feldenkrais, he was almost always straight-legged and stiff.

* Opening up both hands consistenly - "scanning" with his right hand. His fists remained in tight balls for the first two years of his life. He is now able to reach and touch a switch with BOTH hands.

* Rolling over from his right side, the side that prior to feldenkrais, initiated the extensor pattern, and one so extreme that he could not break out of it.

* Comfortably spending time on his stomach and lifting his head up into midline positions. This is THE skill that Owen needs in order to develop trunk and head control. By strengthening the muscles that run along the spine (Erector Spinae), he will develop the strength he needs to hold his trunk and his head up (trunk control comes first, then head control). The key here is that feldenkrais forces the brain to recognize and pay attention to the less dominant/less active side or parts of the body which in turn creates new pathways for this new, learned behavior. Right now, Owen's muscles on the right side of his spine are so overactive (due to cerebral palsy, spasticity, dystonia) that they override the left side's ability to work properly. This has caused severe scoliosis AND made it difficult for him to gain enough muscle control to support his trunk. Since starting feldenkrais sessions, Owen has become not only tolerant of, but very agreeable to, being in the prone position (stomach). He is increasingly bringing his head up and, on occasion, up and into a midline position. There is now a new pathway in the brain to receive the information coming in from a different part of the body.

These developments may be hard for many to contextualize or fully appreciate, especially for those unfamiliar with children who have significant, global developmental delays and severe motor impairments. Most children (typically developing children) put the pieces of the puzzle together so rapidly that one often doesn't even notice the leap from one milestone to another - it is almost unperceivable. But if you slow the shutter speed down, you realize that there are shifts of the body so slight and movements so small, that they are almost lost. These threads are vitally important to development and achievement of milestones and this is what our work with feldenkrais is all about - helping Owen to feel these, learn these and put them all together so that he is enabled to make his body work for him.

A valid argument might be that these were developments that would have occurred, regardless of therapy/intervention. But... Owen had made little, if any, progress with physical therapy sessions and the development and timing of these new patterns and movements were so perceptible and so intimately tied to his feldenkrais sessions that is was obvious that this was the catalyst for these changes. In fact, watching Owen during these feldenkrais sessions is a treat. He smiles, focuses, perceives the movements... You can see the integration happening at both a physical and neurological level. A significant component to the feldenkrais method is that the participant/child be able to allow the movements and that these movements be "guided" by the practitioner. Nothing is forced. Feldenkrais works with the child's unique movements and within a framework of the natural developmental steps, to create purposeful, constructive movements. It all makes so much sense...

Here is an example of how this works for Owen:

Owen never tolerated laying on his right side prior to feldenkrais (you'll notice in the video and in the still photo from above, however, that he is happily laying on his right side). This is due to the fact that it is/was a major trigger for his extensor pattern. Prior to feldenkrais, if he was on his right side, he would receive signals that would cause him to arch - fiercely. He would extend his left arm, tilt his head far backwards. His left leg would straighten out and become stiff - unbendable. He would be STUCK in this position and become very agitated. Through the use of feldenkrais movements, Ingrid and Marsha have helped Owen feel his body and understand that he can bring himself out of this pattern. They have allowed him to FEEL the series of movements that bring him onto his right side and those that can return him to a back-lying position. Although it is not yet consistent, Owen can now lay on his right side without being sent into this extensor pattern. As you will see from our video, he has even been able to learn how to work with this pattern and to use it constructively - to use it to learn how to roll over.

If you want to read and understand more about feldenkrais here is a great piece written on the subject (and it mentions my friends at the Avalon School!), and another at the Anat Baniel web site.

A couple of excellent, detailed videos on the subject:

Video 1

Video 2

And here is OUR video. This video is less about the feldenkrais techniques that we work on at home and more about Owen and his demeanor throughout the time we spend doing this work. I was holding the video camera, so for the majority of the time it was impossible for me to film the movements and work with Owen at the same time. This video does illustrate how receptive Owen is to feldenkrais and how it very much engages all aspects of his development - language, visual perception, spatial abilities. (Note that this video was taken during the floor exercises that we were doing (feldenkrais) yet Owen does spend a good deal of time in his chair and is learning to use a communication switch as well. More about that later...)

I could write until midnight on this subject, but I have sleep to find and dreams to dream. If anyone has any feedback or wants to know more, or talk more, or share your own thoughts on or experiences with feldenkrais, please email me or leave a comment. It won't be the last time I blog on the subject.

And speaking of physical therapy, I had to toss in a shot of Elliot taking a few lessons from Grandma Mimi on the subject. It is important to exercise and do your daily PT assignments - even at age 90!

Oh, and I couldn't resist including a recent shot of the boys...

Cheers!

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.