Friday, November 13, 2009

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!

video

Monday, November 2, 2009

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!

Monday, October 5, 2009

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.







Wednesday, September 9, 2009

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.




Monday, July 13, 2009

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.

Thursday, July 9, 2009

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.

Wednesday, June 17, 2009

Sharing...

From the NY Times blog, "Motherlode," that I follow:

Clouds on a Child's Future.

Recent photos of the boys.

Hope everyone is enjoying the summer. Ours finally arrived in late May and today, at least in Indianola, we broke a record... 29 days with no rain. Thankfully, for the garden, there are sprinklers.

Monday, May 18, 2009

Reflections of a Rainbow in His Eyes

We recently purchased a colorful, 8 feet in diameter, beach umbrella for Owen. Our yard gets so hot in the summer, we wanted a shady place for him so that he can enjoy the sights, sounds and smells along with us. To make his experience even more enjoyable and beautiful, we wanted something that was bright and eye-catching. He and I have spent a good deal of peaceful afternoons lately under this rainbow umbrella.



Peace is good and finally came to me a few weeks ago. I know it will not be the last time that I take a few steps back (or down) only to once again work my way back up again. The first few weeks after Elliot's arrival were difficult. Not in that we now have two babes at home as Elliot, compared with our experience with Owen, is easy. Not because we weren't happy because, truly, we've not been this happy in almost two years. Not because we were sleep deprived as Elliot has always been a good sleeper and our experience with Owen has trained us - if we get 5-6 hours of sleep, we consider ourselves extremely lucky.

These weeks were difficult because we finally had a normal experience and it has been so easy and so good and so happy and so full of joy and we wondered, "Why couldn't we have had this with Owen?" It is different, seeing other people's babies and understanding that yours is different. But when Elliot came along, it put a very intimate magnifying lens on the experience we had with Owen. No throwing up, no constant fussing, easy to bond with, nursing so naturally. No intensive care units, no tubes, no monitors, no seizures (which had just started when Owen was three months old, Elliot's current age). Elliot now makes eye contact with us, smiles and is giggling, splashing in the tub, clasping his hands together, playing with toys, "talking." Owen smiles, but the rest of these behaviors, we may never get to see.

So we mourned the loss - again. The loss of a normal experience with Owen. The loss of certain functions he will never have. The loss of never hearing him say, "Mommy," or "Daddy," or having him reach for my hand when he needs me so that I can help guide him. It is really hard and it really, really hurts.

But you pick yourself back up, and you are stronger than you were before and once again, your perspective has changed. I am even closer to Owen than I was before Elliot was born - both Kesley and I feel this way. When Owen looks directly at Elliot and smiles, it is beautiful - in the purest sense of the word. When Elliot smiles at Owen, we know that there is now one more person in this world who will really know and love Owen. It is hard to explain the joy this brings us. And now that there are "the two brothers," I cherish my time alone with Owen more than ever.

So in honor of Owen and our peaceful times under the umbrella, I wrote a poem.

Reflections of a Rainbow in His Eyes

Do you see what I see?

I see a boy, who has seen the halls of the neonatal intensive care unit, the walls of children's hospitals, the ceiling of the surgery room...
yet I see a boy who stills knows innocence.

I see a boy who struggles to communicate with sounds and his body and the harder he tries, the harder the language is to master, the signals always reaching a roadblock...
yet I see a boy whose voice is clear and whose language I understand.

I see a boy who stiffens and arches and is tormented by the curve of his spine, the tightness of his hands and the limpness in his neck...
yet I see a boy whose body moves in water with the grace and fluidity of a dancer.

I see a boy who has a hole in his stomach, who recognizes the sound of the food pump and who cries with resistance to being fed...
yet I see a boy who eats up smiles and laughter and music and hugs.

I see a boy who cries because he is confused and frustrated and angry and he hurts...
yet I see a boy who smiles when he feels joy.

I see a boy who sees unlike most of us, in fragments and pieces and in shifting patterns...
yet I see a boy who sees rainbows and I see those reflected in his eyes.

Tuesday, April 28, 2009

Reaching for the stars

Jaime, I hope you don't mind if I share this also...

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

Wednesday, April 8, 2009

The Ceiling (part 1)

Thank you all for the ceiling decorating suggestions!

I have decided to paint the ceiling blue, add some fluffy white clouds and hang origami paper cranes, butterflies and dragonflies, in varying sizes and colors, from it. I think I'll also try to incorporate foil paper on the undersides to make them even more visually appealing. We have a small fan that I'll attach to the shelves in his room to make them fly about.

I'm really jazzed about this and will post photos when it is done.

A recent shot of Owen in his new hat.

Thursday, March 26, 2009

New and recent things.

Owen's new Converse.


Six dollars at a consignment store. Now we're looking for some cool sandals for summer and any suggestions for a two year old would be greatly appreciated.

Owen on his recent vacation to L.A. and Manhattan Beach.




The last shot is of Owen in his Phil & Teds Metro backpack. It is totally cool and the best part - he TOTALLY loves it. It is so comfortable to wear him in this as the pack is designed to be lightweight and fully adjustable. It will be brillant for the trails this summer.

The L.A. trip... Owen and Elliot did remarkably well, although the trip was not without its challenges as one might expect traveling with ANY 21 month old and 5 week old (we drove as will probably be the case with most of the trips we take this year). That said, it was smooth enough to give me the confidence to now be able to pack both of them up, by myself, and take them out on adventures. And as a family, we are already planning several trips with them soon - one to see Grandpa Marshall and Nai Nai and stay at the cabin in late June/early July, a bike trip in Southern B.C. and one in Oregon. We realized on the trip down to LA that we've not been stimulating Owen enough the last few months. Sure, he may experience overload sometimes and may get fussy when he's had too much, but watching the big trucks go by the window, with their colorful cabs, listening to Daddy's music all day in the car, meeting new family members, attending parties and dinners and sharing a room with the rest of his family, made him overall more attentive and, most noticibly, helped him sleep so much better at night. So now that it is getting warmer and I am no longer pregnant, our plan is to get both boys out so much more and for Janet (Grandma Chalupa) and I to plan all day outings each Wednesday.

We were gone for two weeks in L.A. and had a wonderful time at Kelsey's Grandma Tutu's 90th birthday celebration (a 3 day weekend full of events) and a lovely, sunny, five day vacation at a beach house on Manhattan Beach. It is good to be back home and although I DO miss the sunshine, I just noticed today that many things I planted in the garden have come up and soon, it will be warm here as well.

Owen's new brother.



He's growing and eating like a champ and now weighs 10 pounds, 10 ounces. He's easy. He sleeps well - most of the time - is cheerful and has started to smile and laugh.

Owen's new ceiling? We are considering a mural or stenciling Owen's ceiling. Since we are not artists per say, but ARE resourceful and can muster up creativity on occasion, we're soliciting any do-it-yourself suggestions. Send us a message with your thoughts. We need to incorporate big images and bold colors so he can easily see the design from his bed.

No new seizure activity. No drama. No surgeries. No new emergency interventions.

Good.

Wednesday, February 11, 2009

Growing up

Our baby is no longer... he's now our little boy.

With all of the struggles with weight gain and the fact that Owen has little head control, no trunk control and, unlike most other 20 month olds who are walking, needs to be carried from place to place, we've found ourselves a bit stuck in time. Owen has, up until Elliot's arrival, still seemed like our little baby.

I've shed a few tears these last few days, looking at my little boy and realizing that he's growing up. We cut his hair yesterday for the first time in months and I cried - again. He has such beautiful locks and the longer hair made him look so sweet. Things were starting to get a bit unruly, though, and so I decided to finally him a little boy haircut. He looks even sweeter but, alas, that baby look is gone. I am slowly becoming okay with this as I know that all of this means he is growing into his role as big brother, as much in our eyes as in his.

Sunday, February 8, 2009

More photos....

Elliot & Family.

Everything continues to go exceptionally smooth. Elliot is having increasingly more alert times and it's been fun to watch him make faces and pay attention to his environment. He is a champion eater/breastfeeder and it makes me unbelievably happy to say that this relationship is going perfectly. He eats every 1-2 hours and finishes every last drop. Not conducive to sleep, but certainly to a healthy growing baby.

Xo, S/K/O/E

Friday, February 6, 2009

Elliot Andrew Marshall



...was born on Wednesday, February 4th at 11:52 am at Swedish Hospital after a smooth and uneventful labor and delivery.

The numbers:

8 lbs 5 ounces
21 inches

Owen hears his brother, goes still and quiet and then smiles and smiles. He approves.





Tuesday, February 3, 2009

Friends doing great things.

I thought I'd take this time, while we attempt to patiently wait for O's brother's arrival and when there is not much new to report with Owen, to spread the word about some great people doing great things. I hope that one of the positive outcomes of the economic "crisis" is that we pay more attention to where the things we purchase - whether it be our pottery or our canine companions - come from and who and WHAT those dollars support.

Our friends, Mark and Ginger, are big fans of big dogs, especially mastiffs. They recently volunteered to foster an English Mastiff named Nelson. Ohhhh, he's a cutie. They are so close to keeping him for themselves, but really want him to go to a home where he can be with people during the day (versus left alone while the humans go to work). You can find out more about Nelson here. Let's help find Nelson a good home!

Elisha, of Elisha Rain Photogrpahy, specializes in maternity and newborn photography. She is a wonderful soul, engaged community member (Indianola) and incredibly talented photographer who captured our pregnancy with Owen in a loving and beautiful way. I treasure the photos she took of Kelsey and I when I was 38 weeks pregnant. Not only do these photographs make lifetime keepsakes, but if you are looking to support a local business woman and artist and want a shower or mother blessing gift that will always be treasured, a gift certificate from Elisha is absolutely perfect. She lives in Indianola, her studio is located in SoDo District of Seattle and she works out of both locations. She also has exhibits of her work at the following businesses.

Dani Spins. I've known Dani for over ten years, dating back to our Portland days. I was absolutely delighted when we visited a couple of years ago to learn that the pieces of pottery that were casually sitting on their sideboard, that I was oogling over, were made by Dani. She has an excellent, creative eye (as she should since she is also a very talented graphic designer) and the glaze style she uses on her pieces is stunning. These pieces are truly unique and absolutely gorgeous. They are also very affordable. The next time you are looking for a wedding gift, I strongly urge you to visit her site.

And, if you are local to Seattle or Kitsap...

... visit Ginger. You can read about them here. We bought a piece from Myorian Studio last year with some money that was given to us - the stipulation was that we not spend the money on bills, or expenses, but that we instead buy something that makes us happy, gives us joy. The piece we have is similar to this one. It's huge - more than six feet across and three feet tall. It is BIG, BEAUTIFUL and makes me so happy every time I look at it. Dave and Kelly of Myorian Studio create metal and glass pieces that fit well with indoor spaces (sconces, railings, wall hangings) as well as pieces that make a lovely addition to the garden (gates, large sculptures). They also do custom work so don't be afraid to ask! All of the business partners at Ginger live in Indianola.

A number of OKM readers already know Shannon at Cerebral Palsy Baby. She and I connected via the blogosphere, and as it turns out, she and her family live in Port Orchard, only 30 minutes from Indianola. Her Esty store, Small Grapes, is a favorite of mine. Yes, many of you will recognize some of your holiday/shower/birthday gifts when you visit this site. I just love Shannon's stuff.

Please spread the word and share these links with friends and family. I know also that there are so many others out there that I didn't mention. PLEASE share this information with us so that we can, in turn, spread the word about other individuals/small businesses doing great things. They are the foundation of a healthy, creative, sustainable economy!

Wednesday, January 28, 2009

Cheating... a bit...

I'm going to copy and paste the same message on the blog that I just left on my facebook page, along with a few photos...

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Thank you all for the emails, voice mails and facebook messages. We so appreciate all of the good thoughts and best wishes... No news just yet, but we will certainly post an announcement and photos once babe #2 has made his arrival. I have my 38 week OB appt tomorrow... Right now, all's well, I feel good, the baby is doing great and we are very ready and excited to meet the newest member of our family. I'm about to post a few photos... an "almost 38 weeks" belly shot (per several requests), a shot of sweet O in the bubble baths we share regularly and one of Dutchy riding in the back of the new double-seater, Burley bike/cross-country trailer that we received from our families for Christmas.