Wednesday, September 19, 2007
Toast, Meep and OK...
As I type this, I am attempting to eat my partially burnt toast that is now cold and soggy. Nourishment has taken on a much different meaning these past two months. And as I type this, Owen sleeps soundly, snuggled up against Meep, the second generation creature, hand-crafted with love by Aunt Mary, that also comforted his papa when he was a child. The first generation Meep was loved to pieces - lietrally. Owen is such a physical baby - he craves contact and sleeps best when he knows that he's being cuddled. He loves to sleep with Meep.
We decided to launch the OK blog as we've come to understand that our journey with Owen will be a very unique one. We are so fortunate to have so many people who care about him and who ask for updates. We have so many emails that we've not yet replied to, phone calls we've not returned, and it can be difficult some days to find the time or emotional resources to continue to reiterate our story and our present circumstances. For those of you not familiar with blogs, you can subscribe to receive updates (at the bottom of the page) and can post your comments (immediately below) to share any thoughts you have. We'd love to hear from you.
We were back in the hospital four weeks ago, in late August - at Children's Hospital in Seattle. We went in with various concerns, including feeding problems (Owen was/is not gaining much weight), acid reflux and a suspicion that Owen could not see. We were able to get some of the feeding issues taken care of, get a confirmation that Owen is indeed visually impaired and that his EEG is still abnormal. The pediatric neurologist informed us that Owen has moderate neurological damage (moderate hypoxic-ischemic encephalopathy or HIE) - the cause of which will probably never be known.
In the past nine and a half weeks, we have had such incredible support from family, friends and community. We are so very grateful. Family continues to "feed" us in so many ways... Grandma Janet going to part time at work to help out each week (to get her "Owen fix"), Grandma Leslie and Grandpa Herb helping on Tuesdays to care for Owen (and do yard work, clean house, fold laundry, etc. etc), and Grandpa Mac and Nai Nai flying up regularly to lovingly hold Owen and fix gourmet meals. Aunt Laura flew out from DC in early September to spoil and love Owen. Uncle Mike has done an incredible job keeping things running smoothly at Grounds for Change. Speaking of GFC, the staff have been amazing - Greg, Mike W, Mike C and Andrea. Our little business could not have managed this without them. Our friends in Indianola and Seattle have been incredible as well. We've had meals and meals and meals (thank you Kelly and Kathryn for organizing), visits at the hospital and at home and so many hugs. We have friends and family advocating for Owen from afar (Melissa) and at home (Cousin Jen, Grandma Leslie). We've reached out and made connections in other ways, such as through the "special needs" forum at mothering.com. Through this, we have connected with families who have children with similar issues and histories and with this additional information, have been able to explore more specific treatments and therapies.
We will be going back in to Children's Hospital in the next few days to look into issues relating to GI problems that Owen is experiencing. He is in a great deal of distress and conintues to gain little, if any, weight. He begins the 0-3 early childhood development program this week, based out of Bremerton (30 miles way). They will evaluate Owen's needs and assemble a team of specialists (physical therapists, occupational therapists, nutritionists, developmentalists, etc) who will provide us with specialized tools to help Owen. At home, he is being given cranial-sacral therapy from a wonderful, compassionate woman, Mara Lindbergh, who lives and works here in Indianola. We massage him each day, hold him, play music for him (thank you, Jim Nason) and love, love, love him.
I hear the little bean calling now...