Friday, December 11, 2009

Happy Birthday Ellie!!! (And a roller coaster of emotions)

Happy Birthday Ellie!!!
This week has been a flood of emotions. I cannot believe all that has happened in this last year. It has been the greatest and worst times of our life. But we are so grateful to have such a beautiful, strong and blessed child in our lives. She has taught us so much in this past year. We have learned so many life lessons and met so many new and caring people that has helped us and had some wonderful blessings from those that love us and care about our family. What a blessing it has been to know the people we know!!!


The results did not quite go like we had planned. Afterward, Dr. E came and told us that she is seeing no increase in function. In fact, there may be a slight decrease. So the plan was that night to proceed with the cath lab and check her pressures to see if she needs to be listed right away, or if we can wait longer. Then the next morning she called us to say that she likes to review these cases that eat at her. And even though there is a decrease in function. Her left ventricle is showing a slight decrease in size from her August echo to her Oct. echo. So now we are going to hold off on the cath lab until she sees her for another echo. So at this point, we were seeing a glimmer of hope. Then we got a call from her tumor doctor. He thinks the tumor is the same size but another doctor feels that it's more prominent or slightly larger. They also are seeing two new lesions on some lymph nodes in her neck. They are not sure if this is from the tumor, or if it's from her recent virus that she had. So this means more tests for tumor. As you can tell, this has been a roller coaster of emotions for us. I was just letting it sink in that if she needs a new heart, than maybe it was better for her to have this chance at life. We are just grateful for her beautiful life and the life she brings to our family. Please continue to pray for in the coming weeks and months. She is so special to us and we continue to see blessings from these special prayers.


Ellie- we have been so blessed to have you in our lives. I have cherished every day and have learned to remember the small things. There were some days that we wondered if you would reach your first birthday, but your strength and resilience has brought you here. You are so loved by those around you and your sisters, all of them care and love you so deeply. We have met so many kind and caring people because of you and the grace of humanity has shown itself over and over. I love to go to clinic and have so many people say "hi, Ellie" and inquire about your well being. We love you Ellie, and may Heavenly Father give you the strength to be with us for a long time.
Love, Mom and Dad.



12 comments:

  1. What a precious little birthday girl. We love you so much. Love, Uncle Brent and Aunt Ree Ree

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  2. I'm sorry the news was not so great. I have been so worried since I hadn't seen a post I was hoping it was not bad news. I just love Dr. Everitt she is such an amazing, caring, wonderful Doctor. We will continue to pray for sweet little Ellie.
    Those pictures are so beautiful! Where did you get them taken. I love the one in the window. So unique and fun!
    Hang in there you are doing such a wonderful job.

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  3. Love the pictures! Missin' you guys down south! Come and visit soon! Love you!

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  4. Happy Birthday beautiful girl! Wishing you many happy birthdays to come!

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  5. We will continue to pray for Ellie and your family. I love the pictures. Come over or call anytime you need to talk.

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  6. I LOVE your pictures! When did you guys do them and who did them? The girls look so gorgeous! Happy Birthday Ellie! I wish you would have had better news the other day. I hope things start to go better for you guys. This past year has been a rough one. We miss you!!! Tell the girls and Nate hi from our family.

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  7. What a beautiful baby girl. I learned of your family from Christa B. My son had medullablastoma and his MRI was on Dec. 8 2004. What an emotional time this must be for your family! My heart goes out to you and I am beginning prayers for your family.

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  8. Sarah Mcfarland found me at tumbling and told me about sweet Ellie. My baby, Libbi, is 9 months old and had surgery in September. She is doing great. I gave Sarah her blog to give you but i told her i'd probably be able to find yours through friends and sure enough, the first place i looked, there she was! I love it! I will continue to watch your story, good luck and Merry Christmas!
    Mindi Dixon
    libbisblog.blogspot.com

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  9. I don't know if you remember me, but my little guy Joshua was in the PICU next to Ellie in June. (Kathleen Adams is my aunt.) She and your family are in my prayers. Happy Birthday!!!

    Sarah Waite

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  10. Happy Birthday Ellie! You are beautiful!! We will continue to keep you in our prayers.

    Loves!! Mason's Mommy

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