Our meeting went pretty well today. We discussed a lot of information and there are still a lot of unknowns about Abby's condition. There is much more genetic testing to be done...not that it will necessarily change Abby's care, but knowing exactly what she has may help them to treat certain aspects of her syndromes in the future.
However, we are encouraged by the doctors' attitude toward Abby's future and we believe that she will have lots of time to really change the world!! :) They believe that she is beating the odds, and so do we. Abby doesn't know the statistics, and we're not going to be the ones to tell her!
We also discussed Abby's future surgeries and the need for an excellent orthopedic surgeon. Thankfully, there is a world-renowned spinal specialist at Hopkins that UMMC is highly recommending! I'm so thankful that we live within driving distance to so many wonderful hospitals!
We were told today that by choosing the trach for Abby, we chose to give her life. They said that when we made that choice, they knew that we were "all-in" and they were too! While it's going to be a long, hard road, this "choice" was a no-brainer for us and the alternative never even entered our minds. While no one really wants a trach for their child, we know that it was the best and only option for Abby.
Matt and I talked tonight about how we kind of feel like we are in an episode of House or something. Stuff like this doesn't happen in real life. Gene mutation and extensive genetic testing is only done on TV. Titanium ribs are only created in sci-fi movies! House diagnoses these strange syndromes that have only 60 diagnosed cases! But alas, this is our world! Crrrrrrrrrrazy!
Anyway, thanks so much for praying for us today (well, and every day!) Things went better than we expected and we left feeling very hopeful for the future!
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Wednesday, November 10, 2010 9:26 PM, EST
We Are Not Alone!!
After playing communication-tag for a few days, I was able to talk on the phone for over an hour with Reagan. She is the mom of Piper Jane, who also has Cerebro Costo Mandibular Syndrome! In case you've forgotten (I sure haven't!), this is an extremely rare syndrome. While we're not exactly sure how many children there are living with it today, Reagan knows of 5. We do know that there are about 60 confirmed cases since 1960, when it was discovered.
Yep, it's that rare!
What makes talking to Reagan so cool is that Piper and Abby are very similar. They have a lot of the same problems, the same patterns in utero, and most of the same types of treatment thus far. Abby is the most like Piper of the others with CCMS that Reagan has talked to. She's actually the only other one with a trach, which I find a bit surprising given the airway problems that go along with the syndrome.
Reagan was a wonderful encouragement in so many ways:
1. Piper is an adorable 3 1/2 year old who is able to get around with a walker, which gives me great hope for Abby's development.
2. She assured me that things do get better!
3. We are able to get a glimpse at what life might be like for Abby in the future. (Every child is different, of course, but this is as close as we're going to get to lighting our path a bit!)
4. Reagan can empathize with me in a way that literally no one else can! She knows what we're going through!
I'm pretty sure this is the beginning of a friendship that will have very strong ties! I'm so thankful that I found Reagan! If you would like to check out her blog, please go to www.reagansblob.com
In other news: Abby had a great day today! She was in a good mood and so was I...I got to hold her for the better part of the day, and I gave her a bath!! (Yes, I know this is a mundane task in a parent's life and that most of you do not find that thrilling. However, in the NICU, you eagerly take whatever "Mom Jobs" you can get!!!) I also changed many stinky diapers, but I have a feeling even fewer of you would find the excitement in that. :)
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Thursday, November 11, 2010 8:33 AM, EST
Some of you have been asking for new photos. I would LOVE to show them to you, but Caring Bridge's photo uploader is kind of a pain. All of my picture files are too big, even when I lower the size of them in my editing software. Soooo, I posted a bunch on Blogger for you to enjoy. They are also on Facebook, if you are a friend. (If you're not, add me!)