(Based on an email I sent out to friends and family last week...)
Greetings!
I have not blogged since Fall/Winter and have been feeling the urge to post an update on Owen. I started back at Grounds for Change (our coffee roasting business) part time in December and work out of the GFC office on Mondays and Thursdays and at home as time allows throughout the rest of the week. The time I have available to blog is very limited as I am investing much of my "spare" time in GFC. I have spent the last several months reconnecting with old friends, establishing new friendships and taking more time to rebuild our social foundation. While I am not sure I'll get back to blogging, as most of you know, I AM on Facebook and really enjoy it for what it is - a way for me to stay in touch with so many friends and family. I'm grateful to those of you who choose to post updates, photos, etc. It's meaningful to ME. So if you've not connected with me on Facebook - please look me up!
http://www.facebook.com/profile.php?id=1137955460
Now that Elliot is two years old as of February 4th, he's much more active, inquisitive and requires significantly more of our time. Gone are the days when eight Kelsey or I could have a quiet phone conversation or sit for five minutes without constant questions and requests. Elliot and I are in a Friday preschool class (parent and child) which he very much enjoys. That said, his favorite thing lately is to join me on the occasional Mondays at GFC. He knows everyone one there and excitedly lists everyone's name off - repeatedly - during our 10 minute drive to the roastery. We get together with friends pretty regularly for play dates and he already has a couple of buddies that he regularly asks to play with.
Owen's recent 24 hour video EEG (last week) revealed that he is currently seizure-free. This is such joyous news for us and for now, we're just sitting with that knowledge and enjoying this time where we have one less thing to worry about. It's impossible to convey the peace that this news brings to me.
We still have ups and downs as it relates to Owen's overall comfort although it's getting a tad easier every day. His sensory issues are so significant that some days he is greatly upset by the wind or by loud noise, and other days, he is upset by too much quiet and too much heat. His sleep DID improve greatly after his tonsil and adenoid removal in early January. He falls asleep pretty readily each night with the help of a significant amount of melatonin. Our biggest sleep-related issue now is that he sleeps for 3.5 to 4 hours and then is awake the rest of the night. We'll be meeting with a sleep specialist next week to discuss this issue.
Our biggest concern continues to be Owen's spine and right hip. His hip is close to full dislocation (due to the fact that he does not walk, the socket that the hip seats into, was never formed by the force of his body weight) which will mean hip surgery. The orthopedist, however, is against doing any such surgery without addressing the spine (since it's obviously all connected). Without the ability to sit or support himself, Owen's spine continues to feel the force of gravity and his scoliosis continues to worsen. With this, we take it one day at a time. It's certainly an issue that weighs heavily on our minds.
Owen and I are in PT and OT therapies each week and I'm hoping that he'll soon be able to use the switch with the iPad that he received as a Christmas gift. I came across this blog recently, http://babieswithipads.blogspot.com/, one of dozens of sources "out there" that focuses on utilizing an iPad as a alternative communication device. My good friend, Laura, has been using one with her son, Victor, and she's been the absolute best resource available to us!
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The day after I sent this update out, I learned that Owen's roommate at Lucille Packard Children's Hospital at Stanford, where he was admitted for four days in 2008 to begin the ketogenic diet, passed away suddenly. Lueza and her mother, Jody, became part of our community during that stay in 2008 and Lueza's passing has left a hole in my heart. While she was several years older than Owen, Lueza and Owen shared so many characteristics including a wonderful, infectious smile. We'll miss you, Lueza.
On a much lighter note, another friend and member of this wonderful community of ours (the one full of fabulous, unique kiddos and their families from across the country), has recently devoted a section of her amazing, funny, intuitive, intelligent and insightful blog to pediatric equipment.
http://birdonthestreet.com/equipment/
If you haven't already paid Katy a visit, scoot on over. You won't regret it and your life will be richer and wiser because of her.
I don't know when I'll blog next, but I'm not ready to say goodbye just yet.
Thank you - ALL of you - for your support the last *almost* four years. We appreciate your love and your interest in Owen's life. It means a great deal to us.
Warmly and with love,
Stacy
