It has been a long time since my last post, and a lot has happened during this time. I don't know exactly why I haven't written sooner. Partly I think that the frequent issues that Carly has had to deal with have been wearing me down some, and I was starting to feel like a broken record with my posts. That said, this blog is an important way to keep all of our loved ones up to date, and to keep Carly in the minds of so many. We also get a lot from the comments from all of you here and we have missed that. We are going to try a new phase of the blog and I will try to write more and post more photos, but also Christa will begin writing more often with updates on how Carly's weeks are going.
Now on to what people really want to know: How is Carly? I have described the last four months as hovering around mediocre, with some periods that were better and quite a few when it was worse. During the good periods Carly has been able to go to school, she is awake and interactive for most of her time there, and many of her classmates love to get to push her in her wheelchair during their outside time. She is full of smiles, eats well and as always she loves listening to music. We took Carly and Kempton on a 10 day trip to Kauai in October and she had her own bedroom with a big poster bed that had windows looking out to the ocean and beautiful gardens. Each day at sunrise birds would be singing outside her window and she would wake up smiling. That alone was worth the trip. The less good periods have been too frequent and typically Carly stops eating and drinking and she sleeps 20+ hours a day. Each time a shunt issue has been to blame.
Carly is now up to shunt 37, which she got earlier today. She had surgery for shunt 36 just last Friday and after a good day on Saturday she slowly got worse again over the week. Today Dr. Auguste found that something had been blocking the flow that likely got stuck there during the last surgery. She is resting well now and we were treated to a beautiful view of the Marin headlands when we got up to her hospital room today. It was one of the first sunny breaks in a long string of rain, and I am hoping that it is a sign that Carly has some sunny days ahead.
We should get home from the hospital tomorrow and we will get to spend Christmas Eve with Christa's family in Walnut Creek. If Carly is recovering well we hope to fly to Northern Michigan on Christmas day to spend some time with my family. We'll be keeping our fingers crossed that both of these things get to happen. I hope you all have a very Merry Christmas and a Happy New Year.
Love, Brad
7 comments:
All we want for Christmas is for Carly Braveheart to feel better. She and you deserve good days ahead.
Love you
I know this has been a long, hard road on all of you with the past few months certainly taking their toll. I hope the good times out weigh the bad, and that they get better and more frequent in the new year. Please know that your beautiful family is constantly in my thoughts and in my heart. Have a very Merry Christmas, and I hope 2013 is the beginning of wonderful new era for you all on this journey.
Love, Sarah
I thought of you guys last week and I'm so glad to read an update. You are in my thoughts and prayers. I hope that sweet Carly starts feeling better and that you get to spend time with both your families for Christmas. Gorgeous Hawaii photo! It's so awesome you made the trip as a family. Here's to a very good 2013!
I think of you often and was glad for the update. I hope that you are able to enjoy the holidays with both of your families. Merry Christmas and here's hoping that 2013 is a happy,healthy New Year!
Sarah Day Seligman
Thinking about Carly brings out the best in all of us. We send much love and best wishes for the New Year!
Love, Susan, Dennis and Riley
Glad to read an update on how Carly is doing. I had been wondering how things were going. Glad to hear that you all had a nice trip to Hawaii! I wish you the best for 2013.
Tammy
thinking of you and Carly often. I check for new posts and was happy to see this one even though it wasn't all good news. I hope you were able to make the trip to Michigan and enjoy a white Christmas. Carly is a lucky little girl to have such wonderful parents and a cute little guy like Kempton for a brother. We all understand how busy you must be and can't always post but that does't mean that we aren't keeping all of you in our thoughts and prayers.
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