Friday, November 5, 2010

Tough Stuff

A Few More Updates




I forgot to tell you in my last post that Abby got her trach changed this morning by the ENT team and everything looks great! The site is healing nicely and she was able to get all cleaned up. She even has a cute trach wrap that goes around her neck now. It's blue with white stars. (I told Abby maybe I'd start making a line of trach wraps, but Matt informed me that he didn't think there would be much demand for them. Don't you think a Vera Bradley trach wrap would be cute?!?)



With the trach being changed and Abby being on the C-PAP now, I might just get to hold her and begin working on the bottle tomorrow!!!! Yay for progress!



I will also begin learning from the nurses how to take care of Abby's trach. There are specific classes I will be taking down the road before we bring Abby home, but I am anxious to begin learning so that I will feel comfortable when that [glorious, wonderful, amazing, tearful] day comes and we'll drive away with her!



Also, Abby weighed in at 4 lbs 4 oz today...up 2 oz from yesterday! Go Abby! Keep on growing!

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Thursday, November 4, 2010 4:23 PM, EDT

The Whole Story







As you know, we have been processing a lot of information over the past two weeks and have been selective in what we have shared with the general public. It’s not that we didn’t want people to know; it’s that we needed to be educated and to understand what we’re up against before we could start answering questions. We were also waiting until we had gotten a second opinion, which we received today.







Matt and I feel like it is time to share with you more specific information about Abby’s condition. She has been diagnosed with an extremely rare genetic syndrome called Cerebrocostomandibular Syndrome. To give you an idea of how rare it truly is, there have only been about 60 cases diagnosed world-wide. It is a syndrome that affects multiple areas of the body, but is characterized by jaw and rib abnormalities—both of which Abby has.







To explain a bit more about the ribs, about half of Abby’s ribs appear to be in pieces on an X-ray. What has really happened is that the bones did not form correctly, so cartilage has filled in the gaps. This has made a small rib cage, therefore causing her lungs to be small. The lungs and heart are also not protected the way they would be with a well-developed rib cage. Naturally, this only adds to Abby’s respiratory problems she already had with her small jaw.







Because of the rarity of the syndrome, we are currently researching doctors who will be best suited to take care of Abby. We have loved our care at UMMC and have nothing but good things to say about the doctors and nurses here, but we also feel like we owe it to Abby to find the most experienced doctors in her types of issues. So far, we located promising doctors in Boston, Philadelphia, and Los Angeles. Because we’re still in the very beginning stages of treatment and Abby is still not truly stable, we won’t be traveling anywhere for quite some time.







Obviously, this has been extremely difficult for Matt and I to grasp. We have our moments and have asked all of the why questions there are, but we are really trying to enjoy every minute we have with our girl. We love Abby unconditionally and will do everything we can to get her the treatment she needs. It’s going to be a long, hard road, but we believe that God doesn’t make mistakes and that He knew exactly what He was doing when He created Abby. As Matt likes to say, this little girl is going to change the world!!!







While it is sometimes very difficult to choose joy when we’re faced with this kind of news, Matt and I have seen over and over again the way that God has been using us in all of this. We have loved the conversations we have been able to have with people because of our situation, and hope that you have been able to see the love we have for God, each other, and both of our children through all of this. We believe in the power of prayer and know that God has answered so many already!







Please continue to pray for Abby. We need her to grow so that she will get stronger. Also pray that her respiratory rate continues to be good on the trach so that she will be able to breathe with minimal assistance.







Pray that we will be able to search out the best doctors for Abby. We’re diving into unknown territory and it’s difficult to find an expert when the condition is so rare. Pray that our current doctors will continue to assist us in this search.







Matt and I would love for you to continue to pray for us as well. At times, we get wrapped up in remembering what life used to be like and we now need to focus on our new normal. We’re trying to take care of ourselves as well so that we can be there for Abby, but it isn’t easy when there’s so much running through our heads.







Lastly, pray for a miracle. We know that our God is bigger than statistics and Abby has already proven herself to be a fighter. Pray that she will beat the odds!







This was not an easy post to write. We have faced things in the last two weeks that no parent should ever have to deal with. But we felt like it was time for you to know so that you could know how to pray for us. Thank you so much for your support and love. It means so much to us!







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Friday, November 5, 2010 9:54 PM, EDT

Family Theme Song



Since Abby was born, "Our God" has quickly become our family theme song. Caleb was video taped by my sister singing it at her house one night and will often begin singing it at random. Matt and I sing it to Abby every day. I sometimes sing it to myself simply as a reminder. We all turn it up in the car and sing along at the top of our lungs. It is definitely "our" song.



I can't post You-Tube videos like I can on Blogger, but here are the lyrics to the song. If you have time, find it so that you can listen to the real version!



"Our God"



Water you turned into wine,

opened the eyes of the blind

there's no one like you, none like You!

Into the darkness you shine

out of the ashes we rise

there's no one like you, none like You!

Our God is greater, our God is stronger,

God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God!



And if our God is for us, then who could ever stop us?

And if our God is with us, then what could stand against?

And if our God is for us, then who could ever stop us?

And if our God is with us, then what could stand against?

What could stand against?



Our God is greater, our God is stronger,

God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God!

Our God is greater, our God is stronger,

God you are higher than any other.

Our God is Healer, Awesome in Power, Our God! Our God!

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