Thursday, April 1, 2010

A long overdue update.

Owen is fully mended from the nasty stomach bug in mid-March which resulted in a two day PICU stay at Miller Children's Hospital in Long Beach, CA. It was a pretty scary episode - probably one of the scariest we've ever had. He caught the bug on the drive down to Hermosa Beach where my siblings and I had rented a house to celebrate my mother's 60th birthday (she drove down with the boys and I since Owen cannot fly - Kelsey and other family members flew). Elliot caught the bug two days later. Both boys had high fevers and Owen vomited fiercely - to the point of vomiting blood and becoming severely dehydrated within a short span of time. Needless to say, since returning home he has been doing fantastic - actually, better than he has in a long time, perhaps ever. This is likely due to the medication changes we've made recently and the fact that he's not had partial seizures in 2.5 weeks (we discovered what was causing these and as soon as we made the change, on the 16th of March, they disappeared). For those of you who didn't know, Owen's life (and ours) has been wrecked with partial seizures since late December. Some of these clusters of seizures were followed by periods of "passing out" for up to 15-20 minutes. Crazy, scary stuff. I'm happy to share what we learned about the medication Clonidine if anyone is interested.

Our life has improved tremendously since the abatement of the seizures. We did have a pretty demanding, busy week this week, with various follow-up appointments, blood draws at Seattle Children's Hospital (two, on two separate days), etc and are looking forward to getting into more of a - carefully orchestrated - routine starting next week. Owen is back to regular feldenkrais appointments - THE thing that has really helped him with his range of motion, turning his head to the left side, etc. He has these on Thursdays and had a wonderful, productive appointment today. It is obvious that when he is calm and feels good, he can absorb the sessions and integrate the movements. He was recently given a very cool, supportive yet stretchy, vest by his friend, Victor, in Seattle (see photos) whose parents have become close friends of ours. Thank you, Laura, Gary and Vic! This has helped him so much with the floor work and feldenkrais movement exercises we do and he's more able to sit in his chairs without needing a harness to keep him straight and supported. We are exploring options for him for school (1-2 days, one of which I will attend with him as a volunteer) in the fall and have an exciting possibility that we'll know more about in June.

Elliot is full of energy, knows quite a bit of sign language and uses it regularly (milk, eat, wind, rain, flower, tree, airplane, bath, etc) and now RUNS. He also loves to dust the floors (see attached photo). He recently began giving hugs to everyone, including his stuffed animal friends, and loves to give kisses to Owen (see attached photo). The stuff that makes your heart melt... He's precocious, independent, loving and totally fun. He and I will be attending a Parent-Child preschool program at the Madrona School on Bainbridge Island (a Waldorf school) on Fridays starting in September for the 2010 - 2011 school year. There are only 8 students accepted into each class and the Madrona School, located on Bainbridge Island, has an excellent reputation. Elliot and I will also soon, for the summer, be spending Tuesdays in Seattle while Owen stays with his Grandma and Grandpa Chalupa. I'm looking forward to reconnecting with close friends and getting back into a city that I love. Elliot will enjoy going to the zoo, aquarium, Children's Museum, spending time in the International District, at the Pike Market. He thrives off of new situations and is extremely social so these outings will be great for him (for BOTH of us). He and I recently went to the Point Defiance Zoo for a belated birthday celebration for him since Owen was having seizures the entire day of Elliot's birthday (February 4th) and required most of my attention. (I've included a photo of Elliot watching the sea otters.) Elliot and I attend Kindermusik classes on the island on Wednesdays - he's a born musician and especially loves the drums. We will continue this indefinitely as he really loves the class and the social interaction.

Kelsey will be taking Fridays off mid-April through mid-August and he, Elliot and I plan to hike, camp, backpack, bike - most of which Owen cannot do since he requires predictability and a regular nap schedule. Owen will stay with his his Grandma and Grandpa Chalupa on this day as well. We've been unable to do these things for almost three years and are totally giddy to get back out into the woods (can you hear me laugh with joy at the simple thought of a day hike!). We do hope to get Owen out in the Burley trailer, along with his brother, behind our bikes, a few times this summer. Janet (a.k.a. "GrandNanny") has been with us four days a week and has agreed to go to three days a week in exchange for watching Owen over a few weekends this summer. We will be going to Portland and to Vancouver, B.C. for two, three day weekends. We hope to also do a couple of single overnight camping trips in the Olympics. Oma (Leslie) and Grandpa Hethcote (Herb) will be taking care of the boys on Thursdays, spending time with Elliot in the morning while Owen and I are at his feldenkrais appointment and watching both boys in the afternoon while I have a bit of "me" time. Monday is my day with the boys, alone. We stay in our pajamas late, read books, make good food, take long baths, garden and have a grand 'ol time. It is great for me to have this time with them and to give them my focused attention. I don't take it for granted and am very protective of this day of ours.

The parting shot... Elliot on Lanikai Beach on Oahu. A long overdue vacation we took in January.

We hope this update finds all of you well, happy and as thrilled as we are for the warmer weather and longer days.

With love from our little corner of Indianola,



Barbara said...

Thanks you so much for this Stacy. For the daily details, for the photos. And for the gifts you and your family bring into the world. Attitude is everything, I'm learning from you. I do hope your Seattle days will include some Schneider time....

Shannon said...

Stacy, thank you for sharing! I'm so glad that things are going better and that you are getting some time for YOU, some time for you and Elliot, some time for you and Owen, and some time for you and Kelsey. So important to find that balance.

I am looking forward to seeing you SOON! I'm sorry we missed the zoo but I know you understand the sick kid thing.

Steve said...

You are such great people!!! Love to the family!

Dana said...

I am so honored that you include me in this personal glimspe of your life! You are truly a person to be admired and I would love, love, love to come out and spend a weekend with you and your boys! Your attitude is contagious and everyone needs to catch it!