I've been pondering a title for this blog post however the above is really the best I could come up with at this time.
The good news is the we do have a very definitive diagnosis. The bad news is the outcome will be exactly the same.
Megan Grace has been diagnosed with Osteogenesis Imperfecta Type II. The entire team of doctors which included a genetic counselor, a neonatologist, the ultrasound technician, and another two specialists in skeletal dysplasias were all in agreement. In fact, they met on Wednesday before we arrived as a group and were able to diagnose it from the CD of prior ultrasound images that was sent here prior to our arrival.
We are very at peace with this outcome other than the obvious fact that we are still going to be giving our little girl back to God. The entire morning went very well as far as getting the clarity we needed.
They spent over an hour doing all of the ultrasound scans again just to be very sure of what they were going to tell us. All total they were looking for five very specific markers and were able to find not one but all of them. We have images of many of them and sat down with the group and went over each and every one. It is so clear that I could explain it to anyone who wanted to see if for themselves.
As of right now, Megan has many, many fractures in her little bones. Some of her bones are measuring very small because they are literally piles of crumpled up bones. It does make me sad to think she could be in pain however we have elected to continue the pregnancy despite this concern.
My blog post today is not being written as I sit here and cry. We said we wanted to come here to get answers even if the outcome was the same and the doctors here were able to not only answer every.single.question we had they we able to show us their basis for the answer. It was simply amazing.
Another reason I seem to be better today is because as I watched the ultrasound at first I was a little upset but never cried but then a peace took over. As I watched the screen I could see things were still very wrong and that it just isn't in God's plan to heal Megan Grace here on Earth. At one point they gave us a break and asked me to walk around to see if she would change positions. During that time I just prayed a lot and told myself and God that we are fine if this is his plan and we would do the best we could to take care of Megan Grace while she is here.
All in all, we are fine right now. There will be days ahead where we are not fine but we will make it through. Thanks for all the support from all of you and we love you all!
Amber, Steve, and Megan Grace
Jalapeño peanut butter quesadilla
2 weeks ago
13 comments:
I'm glad they were able to answer your questions and you have a peace about things. We will continue to pray for all of you!
Still praying for you and your precious daughter. I am happy that you got clarification. You have an amazing faith that will see you through this. I am also glad you are choosing to let God decide the outcome. Blessings to you.
Katie
Your writing is like poety and I can hear the peace in your voice. The tears in my eyes are because I am amazed at how strong you are and can see how much you have grown through this process. You and Steve are better because Megan is a part of your life.
Love you always,
Emily
There are many things in life that we can not explain but to be able to put yourself at peace with a situation like this shows you the power of your faith and always know there is a plan. I am still thinking of you guys daily. Please let me know if there is anything you need or want! Lots of thoughts and prayers to all of you.
Amanda B.
I am always touched when you express the words "a peace came over me." It's like that verse... a peace that passes all understanding." And you have it! We all wanted different answers but as you said you got answers to your questions as you hoped for. I know that this unbelievable peace will be there for you all the way. Still praying for God's hand in all this...I'm here if you need me for anything at all! Love to you all!
Amber - I am so glad that you feel so much peace with this. I'm so proud of you for everything. Your little girl is going to have an AMAZING life w/ our God, and you will be with her one day, living your lives as if she was never gone!
Continued prayers for you, Steve and little Megan Grace. I am so glad that you saw the experts and they were able to answer all of your questions. I wish that the outcome were different, but I hope that having the answers will bring you some peace.
My heart hurts for your pain. May God bless and keep you family and your precious daughter in his loving hands.
Oh Amber. Your writing conveys a strength far beyond what anyone could imagine would be possible. What you and your husband are going through is heart wrenching, but I see you have such amazing faith. I know this is not the outcome you wanted, but at least you had an amazing team of experts there to answer your questions.
I know it has to be hard to take comfort in anything right now, but please know that so many of us love you and are praying for you guys and little Megan Grace.
I am here for anything you may need.
Marcy
I read this to Nathan through tears. We're glad that you were able to get the answers you needed to put you a little more at ease. We are here to help you through whatever the future holds. We love you both. XOXO
Hi, I am Brandon's Momma!
I just wanted to let you know you are SO strong and brave. I admire you so much! I just finished reading Jodi Picoult's newest book 'Handle With Care' about a girl with OI and I can't imagine what you are thinking or feeling. I will be prating for you and your whole family. Continue to be strong and have courage. You are so special and loved.
Amber, You are a extraordinary and strong lady. I am amazed at your Faith. I will continue to pray for you, Steve, and Megan Grace. Love Kim
I am so sorry to hear this news. I have been following your blog for a while. I was diagnosed at birth with Osteogenesis Imperfecta Type I. It is the least severe type, so I have been very fortunate during my life although I have had many broken bones and other issues. OI is such a rare disease that I was shocked to read about your daughter's diagnosis. I just want you to know that I am thinking of you during this extremely difficult time.
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