Welcome to our new home! Please take a minute to look around… “About” chronicles Emerson’s journey, in short and long versions… “Photos” tells her story in pictures… “Home” is where you’ll find current and past journal entries… and if you click on the double arrow at the top of the page, you can sign up to follow this blog & receive email notifications when I post a new entry.
I hope you love this new place as much as we do, it’s been a work in progress for a while now! We are so thankful to COTA (Children’s Organ Transplant Association) for all their support over the years, but are making the transition now to a new phase in this journey – from life during transplant to life post-transplant. We’ve had a good year & Emerson has compensated well for all the varied health conditions she battles, but we know an event that tips the scales could change everything. Here I’ll chronicle the ups and downs of her on-going journey &, hopefully, give meaning to the importance of organ donation – without it there would be nothing to write.
Summer for us was busy and included many trips to the mountains, a weekend at Cedar Point, time at the beach in Michigan, and a week in Hawaii! Eme also participated in a ‘Special Rodeo’ (think Special Olympics, with horses) & won a medal for her performance in barrels – a highlight of her summer for sure!!
We continue to travel to Omaha monthly for IV infusions, blood draws, and appointments with the transplant team and other specialists. We’ve been doing it for a full year now & I’ll be honest… it’s tough. We’re certainly thankful, though, for this season of stability (something is working!) and the 3+ weeks at home between every visit.
In current news, Emerson just celebrated a birthday – 8 years old! WOW! Every year is a party we weren’t supposed to plan… a milestone we never thought she’d reach. Every year we stare a little longer and listen a little closer, so thankful for another year to watch her grow.
And in other big news – Emerson started school, attending half-day Kindergarten twice a week! She loves spending time with new friends, but isn’t so sure about the learning aspect of it all. She struggles with the work, which I suppose comes as no surprise given all she’s been through, but everyone at school has been wonderful in welcoming her into the classroom and helping her to stay focused and on task. She’s attending Tuesdays and Thursdays, as tolerated, but tires easily and will likely transition to homebound instruction through the height of flu season. Even now, though, the widely publicized out-break of Enterovirus D68 has us on heightened alert.
The decision to send Eme to school wasn’t made lightly. As always, we know a “normal” childhood illness can be dangerous for Emerson and we tread carefully when putting her into environments with other children. We know too, though, that Emerson is very social and that she craves interaction and input from other children. With that knowledge, we’re confident it’s the right decision for her… regardless of what happens. Emerson fought very hard for the chance to be a little girl!
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