Thursday, May 29, 2008

Odds have it.

We had Owen admitted yesterday morning - at 7:30 am - for a 24 hour EEG/video monitoring. His seizures continued to worsen over the weekend, with his/our sleep diminishing to 2-3 hours a night.

I really thought that the activity we were seeing was that of myoclonic seizures, given their manifestation, but the interpretation of the 120+ seizures over the course of 21 hours revealed that the infantile spasms are back. Ugh.

Owen and I stayed overnight at Swedish Hospital, Kelsey stayed in the city with Kevin and Kathryn. Janet came for the first day, Leslie joined us for the second. Only one parent is typically allowed in the rooms on pediatric units, something that I'll never understand. I would trade sharing a single, worn out, sunken-in-the-middle cot with my husband for the support and comfort that having him close provides. Owen and I slept for a total of 45 minutes the entire night. Seizures and a heightened awareness of unfamiliar surroundings kept him up most of the night.

Owen and I have slept a total of about 21 hours in the last seven days - Kelsey only a handful of hours more. I do my best to try to buffer Kelsey so that he can get up at 5:00 am each morning to get into GFC somewhat refreshed. Lately, however, Owen has been most comfortable sleeping in bed with us - Kelsey's sleep then directly affected by the bouts of seizures. Neither one of us minds, however, as we are warmed by the fact that Owen knows we are there and is comforted by being with us. He truly relaxes and feels safe - you can sense it in his body language and the fact that he much more readily falls asleep, despite the seizures.

We returned home this afternoon, weighted down with the recurring spasms information. I find that I am not surprised, but certainly saddened. Owen has endured over 80 ACTH injections, disruption to his overall sense of well-being, a hindering of any possible development since last October (six out his ten months of life) and six figure hits to his lifetime health insurance maximum because of these seizures and associated treatments.

We are moving forward with Vigabatrin - only available in Canada/Mexico and not FDA approved in the States. This is one of a handful of reasons we chose Dr. Sotero as he is willing to prescribe this drug which is the treatment of choice - before ACTH - in Canada, Mexico and Europe. In the next few weeks, we will also be moving forward with the ketogenic diet which we are very excited and hopeful about. There have been recent articles in the Seattle Times and New York Times outlining the benefits of this diet. We will try to work through Children's Hospital for this as there are two nutritionists on staff there who are skilled with this highly precise diet. There are Bibilical references to the diet and it's use became highly touted in the early 1900s on the East Coast, falling out of favor when certain pharmaceuticals like phenobarbital, a less effective treatment, came on the scene in the 1940s.

We will continue to keep you all in the loop via the blog and, in the meantime, appreciate any toe and/or finger crossing, sacrificing of chickens, saying of prayers, giving of blessings...

On a totally unrelated note, my cousin, Jesse, was out here last week from Iowa City to attend the Sasquatch Music Festival with my brother over the holiday weekend. Jesse, we loved having you here for a day before you left for The Gorge. We missed saying goodbye due to our stay at Swedish. We love you very much. You, and your music, are such a gift.

Sunday, May 25, 2008

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.

Sunday, May 18, 2008

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.

Sunday, May 4, 2008

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

Saturday, May 3, 2008

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."