Going solo.

Owen and I went to the Port Townsend farmer's market on Saturday. Kelsey had planned a ride with a friend on Bainbridge, so I decided it was a good time for me to venture out with Owen, solo.

I love Port Townsend. Their farmer's market is the best on this side of the Sound. The sun is always shining (as it always seems to be in Indianola). You can walk to get your groceries, walk to go out to eat, walk to see live music, walk to get a cup of coffee (Grounds for Change, of course), walk to the beach, walk to the many parks. Did I mention that everything is walkable? There are wide bike lanes, a public trail that meanders through town and so many wonderful green spaces. Their summer music festivals are incredible.



We parked by the farmer's market, stopped to see our friend Chris from Serendipity Farm, watched some live music, strolled around the market some more and then spent an hour and a half walking the hills of PT. It was a glorious, warm and sunny day. Owen was stylin' in his new shades and made everyone smile. He did great.



At home, in addition to our joys, we continue to have our daily struggles. Owen's weight is fluctuating - he gained a few ounces once things settled down after the tube (7+ weeks after, unfortunately), but continues to lose a bit, then gain a bit. He is now below 15 pounds again. We have incorporated rice cereal into three of his daily feedings to try to thicken things up and make them stay down. Overall, this seems to be working. I feel like we are stuck, however, in this place where he's not growing much and his stomach is not expanding to hold more food, yet we can't get enough food down him to make either of these things happen. It is so incredibly frustrating. We have been told to keep him on the pump all of the time, but he can't move things through his system efficiently enough, so it all eventually backs up anyway.

We are decidedly against any further interventions in the feeding realm. They could perform a Nissen procedure at Children's where they tighten up the esophageal sphincter (the top of the stomach) so that the contents are forced to stay down. The surgery itself is a major one and the side effects can be very serious. The GI docs could put Owen on a motility agent, to help move things through his system more efficiently. Again, the side effects are really horrible. So we will continue to do the best we can, feeding Owen from his tube, keeping him comfortable at home and keeping him out of the hospital.

The most recent development is new seizure activity. Not spasms, thankfully, but evil in their manifestation, nonetheless. For Owen, his myoclonic seizures happen right as he is falling asleep. This morning, he tried to fall asleep for an hour and half, each time he'd jerk awake just as he was going into deep sleep. He then cries and cries. Its horrible to watch as he gets so tired and desperately wants to sleep. This new seizure activity is not surprising as we've known for some time that Owen will be faced with differing types his entire life. His neurologist increased his dose of Zonegran last Monday and told us to give it two weeks to see if this helps. We're keeping our fingers crossed - again.

Despite these challenges, Owen's overall demeanor continues to improve. He's more calm, coos more, and is tolerating so many things, so much better. Our lives are easier because of these improvements and for that, we are very, very grateful.

Mmmmmm. Goooooood.

We had forgotten how liberating it is to go on vacation. A week in the Methow Valley. Sunny and warm. Hikes in the Ponderosa Pines. Wildflowers, songbirds and morel mushrooms. The sweet smells in the fresh of the morning and the songs of the tree frogs at night.

Happy, happy, happy.

Our Siva: August 1992 - May 2008

We finally let Siva pass yesterday, calling in a mobile vet to help us bring her peace. She ached all over from arthritis, her body was riddled with lypomas (benign tumors), she was 90% deaf, had lost a good deal of bowel control, had started to lose her appetite and had developed an intestinal infection. She was our first baby - Kelsey and I adopting her when she was a mere 6 weeks old, her vision not yet sorted out and her belly full of worms. Her parents weren't papered labs and she didn't make the cut with her first family as a hunting dog. My manager at the hospital that I was working at in Iowa City asked if anyone wanted a lab puppy - he couldn't wait to get her off his hands.

Kelsey and I had been dating for a year and a half - he was 18, I had just turned 20. I brought her into the house wrapped up in a blanket, rolling her out onto the floor in front of Kelsey as he worked on a midterm paper. She stole our hearts forever.

Siva hiked with us in mountains across most of the Western US, on swampy and mosquito infested trails across the Midwest, and swam in more lakes and streams than we will ever be able to count, although in recalling "The Siva Years" the last day or so, we've certainly tried to revive memories related to each and every one of them. She was a master frisbee dog until she ruptured her first ACL our second year in Portland (1997) and the second would follow suit a few years later on Bainbridge Island (2001). Up until a couple of years ago, she would have people shaking their heads in disbelief at how long she could swim in exchange for a stick tossed into the water. The tosser's arm would tire before Siva's passion and stamina for the retrieval process waned. She was an amazing companion and we will miss her dearly.

For those of you that knew her, we are putting together a slide show and will post this sometime soon. Many of you are featured in the photos, another testament to the many friends that Siva made during her almost 16 years.

Each time I listened to DogSong2 by the Be Good Tanyas the past couple of years, I knew it would remind me of Siva someday...

Out in the trees, dirt on our knees
We laid him down forever
And on that hill there it was still
As in the ever after

He lays his rest we knew it best
To lay him down so gently
And now he sleeps where moss does creep
And no more is he with me

The birds did cry, and so did I
To think of life so lonely
And in their song I heard it long
What sadness, and what beauty
Your friend is gone, but you live on
In life you loved him fully
But now little streams and forests dream
And all is made more holy

A new chapter.

I felt compelled to change the look of the blog. It was put together last August, in haste and between hospital visits, as a way to let everyone know what new emergency had popped up to surprise us. I feel like we've now entered into a new chapter in our life with Owen and that the portal needed a bit of a face lift.

Thus far, the story goes...

Preface: Nine months of pregnancy bliss.

Chapter 1: Oh my god, what is happening?

Chapter 2: Okay, we can do this. Despite the challenges and the surreal nature of it all, it is starting to seem normal.

Chapter 3: Yet to be written.

As a midwife-in-training, Louisa was present at Owen's birth. I've been catching up on other's blogs recently, including hers (see sidebar - Mama Mid(Wife) Madness). I was reading through and came upon entries from last July that made reference Owen's birth. It was difficult yet comforting in some strange way to read her thoughts on her experience.

I'm going to finally say it... I still believe in home birth. I labored 21 hours, unmedicated, not to prove anything but rather to give our child what I felt would be the best possible beginning. I still believe in home birth. I believe that a woman's body is made for giving birth and that, in most instances, she can safely deliver her child naturally. This is not to say that there is not a place for interventions - there certainly is. I also very strongly believe that a woman should be allowed to chose where she feels most comfortable giving birth. As Paulo Coehlo says, "It's one thing to feel that you are on the right path, but it's another to think that yours is the only path."

On another subject... blogging has, at times, seemed very self-centered, like somehow our life has more significance than other's lives. Everyone has struggles, joys, things in their life that they want to share, exciting plans to talk about. I think, though, about how much I enjoy reading the other blogs, how they allow me to experience another's perspective (or just get easy access to excellent recipes) and think, well, if I bore you too much, you can just close your browser window. Pretty easy.

So that said, many of you have been asking about the blog, about the lapse in communication, whether there will be a new posting soon, and it pleases me to say that there is not much new to report with Owen. Okay, so with most babies, you'd hear, "Well, he's walking, talking, reaching for objects..." We are just happy that there are no seizures, no infections, no fussiness. He loves riding around in his Phil and Ted's stroller, sitting in his "hot seat" and laying on his back. These are BIG improvements for us. He now weights a whopping 15 pounds!

Janet, Owen and I took a road trip this week to Raintree Nursery, located at the base of Mt. St. Helens. It was the first road trip I've been on since Owen was born. I brought home two kiwi plants, a jasmine, and a "Scabrosa" rose hip. I am so jazzed to get them in the ground.

Of course, I couldn't help jumping out of the car on several occasions to take photos. Highway 508 is gorgeous and the entire landscape looked and smelled of spring. I'm a big fan of old barns and took a few photos of some especially fine ones.

Included also is a photo of Ms. Lillian who turns one year old on May 9th and of Mr. Owen, riding stylish in his Phil and Ted's.



















We've also been making batches of homemade pasta with the pasta maker that dear Natalie bought for us. I asked Janet what we should call the shots of our pasta creations. She suggested "Pasta in the Raw."

Sixteen days of April.

Owen developed a second infection of his PEG site. He is on day seven of ten of amoxicillin - his second round of antibiotics. ALWAYS give your child probiotics when giving them antibiotics. It dramatically reduced Owen's severe vomiting within a day. We all need those beneficial bugs in our belly. His site looks great - better than it has since the surgery and we can tell that he finally feels better.

We, along with Owen's neurologist, decided late last week to halt the prednisone. It was making Owen crazy - really, really irritable - and we suspect that it is what has hindered healing of his tube site and perhaps aided the infection. We've had two really great days and cherish every minute of them. He's on my lap, happy as a clam, as I type this.

Owen is taking all of his nourishment by tube. He will no longer take a bottle. This is very, very frustrating and heart-breaking for me, but I must get past it and work on getting him to take solids by mouth.

Grandpa Marshall and Nai Nai came out for a brief, but busy three day visit. We put them to work prepping materials for the Green Festival. We tried to hire them, but California called them back...

Kelsey helped Herb lay flooring - as you'll see in the photos, they look like they are having WAY too much fun.

Mick, Corey and Naomi came out for a visit while Kelsey was "flooring" at Leslie and Herb's. I was finally able to meet the newest member of our extended friends-family. She's truly adorable.

Janet and I moved almost eight yards of top soil, six yards of bark, and a number of "one-man" rocks and have been weeding, digging, planting, mulching. It is satifying for me to watch things grow. Given our struggles with Owen, it seems to help create a balance. We have new terraces, new veggie beds, a corn and sunflower bed and several barrels for roma tomatoes. The tomato plants arrived late last week from Territorial Seeds and they are in the soil and "green-housed." I WILL have tomatoes this year.

The Green Festival was energizing, amazing and everything we hoped it would be. It was great to see so many of you. Leslie was a power-house in the booth both days, fielding questions about fair trade, sustainability, etc and helping to get people hooked on GFC coffee. Janet packed, hauled boxes, unloaded and helped set-up the booth - she then took care of Owen for two straight days in a hotel four blocks away. We distributed and sold several of the items that Mac and Margery worked so hard to help us prepare. Kristin Quick lent her professional trade show experience during set-up Friday, taking the day off to help. Thank you all...

PHOTOS

Wishing you a warm, sunny and fragrant spring.

S/K/O

Bumpy, but smoothing out.

"They" said that the G-tube "may exacerbate reflux." They didn't say much else. Thank goodness for the Parent-to-Parent forum and all of the mothers with kiddos on feeding tubes who have answered my questions these last two weeks. These women know because they've lived it. According to these moms, it almost ALWAYS worsenes reflux - for 1-2 months while they get used to a new area of tension in their stomach. I have been dropping in on this forum so much lately... "Is this normal?" "Does your child's site looks like this?" "What does granulation tissue look like?" What in the world did parents do before web-based forums? Good lord, I would have gone crazy. As if it's not enough to try to get used the simple fact that there is a hole in your child's stomach.

Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.



Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.

I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.

Musings on life that make sense to me.

"I sometimes wake in the early morning and listen to the soft breathing of my children and I think to myself, this is the one thing I'll never regret and I carry that quiet with me all day long." - Brian Andreas



I happened upon Brian Andreas' work at Fireworks in University Village last December after one of Owen's appointments at Children's. I immediately fell in love with his stuff and spent at least 30 minutes looking at his various collections - sculpture, storybooks, prints. I ended up buying an unframed print for Owen's room called "Deep Roots." His musings on life are so original yet so true. His sculptures, so absolutely beautiful and vivid in every sense, incorporate weathered wood, metal and brightly colored images.

I just recently discovered that Brian was born in Iowa City in 1956, lived the majority of his life as a young man in California and now lives in Decorah, Iowa with his family. Ahhh, it all makes sense...

"Make sure you got clean underwear, she always said, in case you get in an accident & I always figured that'd be the least of my worries, but now I'm older & I see there's a lot you can't control & some you can control & clean underwear is one of those you can. For the most part." - Brian Andreas.