is here. It’s from CJ, one of my very early inspirations when I was thinking about beginning a blog. And now, she’s inspiring me all over again, with her wonderful and creative way of reaching out across our nation and the world to spread Down syndrome awareness.
What am I talking about? Continue reading “A beautiful gift of love and time…”
It’s very quiet around here, lately, and for that I’m so grateful. We had another appointment with the cardiologist last Friday, and at that visit, Avery’s heart looked so good that we’ve been released from the weekly checks. In fact, we don’t have to go back for 6 months! Continue reading “Follow-up visit”
My weekend involved, in no particular order: 4 plane flights, a blizzard, an unexpected 2 hour detour on a Glacier Charters bus, a wonky computer, a plastic baby doll in my suitcase as it went through the airport security X-ray, a few tears, some excellent questions, and laughter–lots and lots of laughter. Continue reading “Believing in Achieving Conference”
I’ve been slowly removing items from the back of the car, things I’d thought we might need on our trip to Seattle, and with each box or bag, I’m realizing the car was packed by a crazy woman. Continue reading “The tale is told in the unpacking”
Isn’t that amazing? That such a big thing could be accomplished in such a relatively short time? Avery is sitting on the couch watching Sponge Bob and bossing everyone around (very imperial) and I can’t find words big enough for how good it feels. Continue reading “We’re home!”
and Avery has been moved from the CICU to the regular hospital floor. I can’t thank you enough for the love and concern, it helped me so much, especially through the long afternoon of surgery yesterday, and the longer night in CICU. Continue reading “The surgery was a success”
This is Jennifer’s faraway friend Rebecca. I just had the pleasure of talking with Jennifer in Seattle. Avery’s surgery was a success. Jennifer was very calm and collected, and wants everyone to know that even in her most nervous of moments she felt lifted by our love and prayers. She mentioned twice that the surgeon was happy guy, so happy that she felt assured that things went well. She is waiting to see Avery who is in the ICU right now, and plans to kiss every inch of his body that isn’t covered in tape, lines, and wiring.
In the best case scenario they will be headed back home in about four days, provided that the baby steps to wean him off everything goes as planned. If Avery needs more time the stay could be extended. Jennifer will be calling with a report tomorrow after the doctors have made their rounds. Please keep them in your thoughts and prayers in the coming days as Avery recovers from surgery.
Just last night, after Avery’s bath, when he was walking around in his underpants and refusing to put on his pajamas (it’s a stage, very defiant, can you believe it was annoying to me just last week?) Tom said, “It’s really going to break my heart, seeing the scar.” Continue reading “Thank you”
Every post I’ve written since this one is about more than whatever I’m writing about: it’s about coming to terms with the recent news we’ve had about Avery’s heart. Continue reading “Avery’s heart”
I’ve been thinking about the past, lately, reviewing things in my mind, reliving our early days, from that shocking phone call from the pediatric cardiologist with the words, “Good news! You won’t be life-flighted to Seattle for emergency surgery!” (Tom’s reply: My God, I didn’t even know that was an option) to the way the smell of the NICU used to seep into my clothes, my hair, my skin. Especially, the babies. They didn’t smell like milk, or diapers, or lotion, or even Tom, me. They smelled like the hospital. Continue reading “No More Tears”
I’m a little bit late in posting this, but in case you haven’t heard, the amazing CJ of Little Miss E has created a fun way to connect families, spread joy, and increase DS awareness. It’s called the T21 Traveling Afghan, and here’s how she explains it: Continue reading “T21 Traveling Afghan”
In the “Ask a question” thread over at the Downsyn.com book discussion, Monica was wondering what I’d noticed regarding the impact of DS on sibling relationships. I thought the question was an excellent one, and I wanted to share my answer here, too. Continue reading “What about sibling relationships?”