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.

2 comments:

karengberger said...

SO happy to hear that you gotto go to P.T. for a day of market, walking and enjoying the town. I also LOVE that place...we often talk about moving there someday.

I am sorry that Owen is having difficulty with seizures before sleeping, and with feeding, things that we often take for granted, but are so essential to rest and growth. You two are the most loving and dedicated parents & care team. I am giving thanks that Owen has you for parents, and that you have each other. God bless all three of you.

Bird said...

I think you are doing a good thing by avoiding the Nissen for now--it is a lot harder to feed orally with one (or so I've been told by my son's feeding specialist).

I can't remember the name of the product, but I read about a fruit puree of prunes and others that really made a difference in getting the bowels moving. I read about it at http://nanaslug.livejournal.com

Personally, we use a lot of apple juice to keep things moving along. We juice organic apples and my son LOVES it.