Monday, February 18, 2008

Mommy life: One-Year Blogiversary

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.

14 comments:

  1. You've come a long way, baby! We're praying for continued growth, and for you to desire to start eating! Love you!!

    ReplyDelete
  2. Has it really been a year???? I remember when I found your blog and I saw those pictures of Braska post-surgery on Muncher's blog. A year? Really?? Wow!

    Congratulations! I look forward to reading your blog everyday!

    ReplyDelete
  3. It has been so great to watch Braska grow up over the past year via the internet. Technology has abolished the distance we feel from you in a sense. We are glad you take the time to share your daughter with us because we really do check in with you every day!

    Mindy

    ReplyDelete
  4. Braska, I am so glad there was a long post today since I am stuck in my bed. I loved looking at how far you have come. I think it is cool that your mommy "scrapbooks" on line. I had forgotten that you have an uncle named Levi. You know that is what I am going to name one of my little boys when they are born too. I hope you have a great day. I love you, Andrea and boys

    ReplyDelete
  5. What a year!! Wow! Your post-surgery photos were what made us discover your blog - they were so helpful to us when we were preparing and going through Delphine's surgery.

    I look forward to reading about you for many more years :)

    ReplyDelete
  6. This grandma thinks you are wonderful for keeping us a part of Miss Nebraska's life. Thanks so much RK. I find myself so pleased with her writing this blog and then I remember who does all the work. So thanks a bunch. I love it. Grandma C

    ReplyDelete
  7. it is fun to look back and to see where God has taken you Braska, and your family...it builds up your/our faith for the future to see so many answered prayers. next year Braska, for your 2 yr. blogiversary I predict we will be seeing retro pics of tons of fun messy food faces and priceless reactions to those new tastes!

    ReplyDelete
  8. Happy Blogiversary! What an amazing year you've had! I know I've only been reading for about half of that - but I'm so glad I found your blog & am reading along!

    ReplyDelete
  9. Thank you all for your blogiversary wishes. It's all about you...the loyal reader!! Well, it might be a little about Braska, too.

    ReplyDelete
  10. Wow what a year you have had!!! I too love blogging and find it incredibly theraputic. It is so nice to be able to write your honest feelings and know that there is a whole community of people out there who know how you feel and accept you and your child. It is wonderful. I too find blogging and catching up on everyone else's post and especailly pictures to be one of the highlights of my day!!! YAY Braska for all of your many accomplishments over this past year. You are an incredibly brave, strong, and amazing girl!!! Now just eat for mommy : )

    ReplyDelete
  11. Happy blogiversary! It's fun to have found y'all - I had open heart surgery too Braska - it was VERY long ago and I was a little bit older (I was three)!

    ReplyDelete
  12. oh my I wish I had time to read all those links right now! I'll have to come back.
    I hope you know rk your blog is such an inspiration to me, but to read that a mother was inspired to welcome her DS baby, well that just takes my breath away.
    Thank you for sharing Braska's and your story with all of us. You are truly being the light this world needs.

    ReplyDelete
  13. Wow, you have been such a part of my life through your blog and love to read all the updates. It's been a long & happy year for you all. I'm so glad to have such a bond with a very special little girl and her family. Because of you sharing all of the mountains you have climbed, along with words of wisdom from Mommy & Daddy, I now have a new little niece, Ava. :-)
    You are all a True Blessing and I pray that God Blesses you all "10Fold" in years to come. Maybe someday we will be able to meet in person ~ Carrie & Family (thru the Busey Family)

    ReplyDelete

Be sure to leave a note so Mommy can read them to me each day!! (Sorry to add the moderation, but we were getting spammed!!) Thank you!