Today marks one year from when Braska started telling her "stories" through this blog. She was just shy of 3 months old and preparing for open-heart surgery the next week. In an attempt to keep the grandparents happy with plenty of updates on how she felt that day and what fun things she was learning from her baby bouncy seat, she decided to share a story each day, along with a few pictures here and there.
Braska has come a long way...a very long way. She has gone from a quiet, very calm baby whose heart was working hard to keep her awake for longer than a few hours at a time to a little almost-toddler who has decided that she wants to try things (not eating, of course), go places, and interact with us in ways I honestly didn't think we'd experience for much longer than it has been. She has now worked about 11 months with developmental therapy and occupational therapy and about 6 months with speech/feeding therapy. She's mastered rolling, finally conquered sitting, she's working on standing, and if we could only convince her to eat! She spent 8 days in the hospital for heart surgery, 7 days in the hospital for rotavirus/dehydration, one overnight for her PEG procedure, only a few hours for her PEG to button change, and minutes for the granulation removal. (That's not counting the 24 days in the NICU pre-blog.) We've accumulated a long list of doctors, all of whom who have been very helpful and thorough with our various issues. And we've learned the road from Champaign to St. Louis well enough to drive it in our sleep....but we won't.
This venture has become a blog monster that neither of us ever expected. It has served as a comfort to me during the beginning, when I needed adult conversation and support badly. It has served as a virtual diary of sorts to save and look back on when I can't remember the date something happened. And most importantly, it has served as the venue through which we've met and come to know so many people who have offered SO much knowledge, support, encouragement, and acceptance. I can't even imagine my day without blogging, as sad as that seems sometimes. But it's an outlet, and it's something I really enjoy. It has helped to educate and inform many people who didn't know about DS or had never seen a baby with it. It has even played a part in helping at least one mother decide to give her baby the chance to live, and what a beautiful, precious LOVED baby she is. I feel sure it has touched lives we don't know about and maybe never will. That's ok. We're thankful for the opportunity to say hello each time you stop in to check in on the happenings in our day. I really consider it an honor that so many of you are regular readers and care so much about what's going on in the life of my daughter and our family. It is not taken for granted, let me assure you.
In order to reminisce just a bit, here are some favorite posts, some important ones, and a little glimpse at our journey over the last year.
~~To start with, of course, the first post on the blog... A baby blog?
~~Some of our open-heart surgery posts... Sleeping Beauty, the first day of fixed-heart wiggles, the last day in the hospital, and the day to go home!
~~There's been lots of therapy pictures and info...Miss Robin's first visit, Miss Judy's playtimes, and eye tests with Miss Sue. Don't forget all the feeding with Miss Louise, like the day she surprised us all, and the messes we've made.
~~There was Braska's first pool day.
~~She worked hard at rolling.
~~Can't forget the glasses!
~~Just this month she started to think about standing.
~~There was plenty of Bears football watching, including dressing for the part.
~~We shared about lots of doctors and hospitals and procedures and such. Like when she got her new tube (PEG), and how she first reacted, and what she thought about it.
~~We learned alot at her six-month appointments at the DS clinic, from both her perspective and the adult detailed version, and her one-year check-ups as well.
It's been quite a ride, and it's "only just begun", as the Carpenters would say. For the few of you who have been on board from the beginning, thanks for sticking with us. For all of you that have jumped on our little bandwagon along with way, we're SO glad to have you on the journey with us. Here's to another fun-filled year and many more to follow.