Friday, April 10, 2009

The Outcome

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

20 comments:

  1. Amber, words cant describe the heartbreak I have for you and your DH. I am glad that you were able to get all of your questions answered and the healing process can begin for both of you. Im in awe still of your strength and in tears for you at the same time. Please know my prayers continue. Gld Bless!

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  2. Amber, my heart is with you all as you take in this news and continue on your journey. I am glad you got some definitive answers, but my heart breaks that it was not better news. You all will continue to be in my thoughts and prayers and you are an inspiration.

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  3. I am so sorry that you did not receive a more hopeful outcome. I am inspired by your hope and optimism. I wish the best for all of you. My thoughts and prayers are with you and your family.

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  5. Amber, when I read your blog, 2 Corinthians 9:6-15 came to mind. Verse 8 reads: "And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work." I believe God has given you the grace to accept His plan. I clearly see that because of your faith in God, "men will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else" I am inspired by your bravery as you, your husband, and Megan Grace continue on your journey. I am so very sorry for the difficult road you will be facing in the days ahead. However, I thank you for sharing your words of wisdom, your strength, and pointing to God who's plan is perfect. You are an inspiration to me. Thank you!
    (withoutshoes)

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  6. You are so strong! I pray for continued strength for you and your family in the days to come. Your family is in my thoughts and prayers.

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  7. My prayers continue for you and your family. ((HUGS))

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  8. Oh sweetie, your strength and courage amaze me. I will continue to pray for that astounding faith, strength and peace to carry the three of you through this difficult journey.

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  9. My prayers are with you and your family! I'm so sorry to hear you did not get a more promising prognis. {{hugs}}

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  10. Our thoughts and prayers are with you during this time. I am heartbroken for you guys, but also happy that you are at peace in your faith. Continue to stay strong and let us know if we can help you with anything. You are an amazing family - with grace and love and strength that is leaving Megan Grace with a legacy she would be proud of.

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  11. Amber, I want you to know how sadden I am to hear of Megan Grace's diagnosis. I to know what it is like to hear that their is something going on with you baby other than what you hoped for. I encourage you to visit my blog and http://knoahsarc.org as this may help you in coping, answering questions and finding support for your family. God Bless!

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  12. april i hate hear you did not receive better news, please know i'm praying for you and your family during this trying time!

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  13. Amber,
    I have no words to accurately express what I would love say eloquently to you. I love you and have been praying for you and Megan Grace. I wish her diagnosis were different and you had been given hope for a future with your daughter. I am deeply saddened. Your strength amazes me - you inspire me. Continued prayers for you and Megan Grace. You can lean on us anytime.

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  14. I will be praying that God's peace surround you during this terrible time.

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  15. Thinking of you and your sweet little daughter today, picturing you both held safely in God's hands.

    Becky Smith

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  16. Your strength, courage, and faith is truly inspiring. My prayers are with you, your family, and Megan Grace. May God continue to provide you with the peace and comfort as you navigate through this difficult time!

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  17. I am so sorry for all that you are going through. This must be very difficult for you, and I commend your strength. Remember to cry as much as you need to, and that there are people out there (even strangers) who share in your pain for Megan Grace.

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  18. i found your blog through a friend.
    my husband and i just received a diagnosis for our little boy this week that he has skeletal dysplasia polydacty. a condition which has a similar outcome as yours.
    i am so sorry to hear your story and i will be keeping you in my prayers as i pray for ourselves. i can understand what you must be feeling.
    may God bless you and give you peace through all of this.
    jacquelyn
    www.bodeutsch.com

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  19. I am so desperately sorry to read this news. I found you from Stacey's blog. I will be keeping you in my thoughts and prayers. I have my own little blog but I also run 'Whispered Support" with my dear friend Carly. We are here whenever you need us xxxx

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