Wednesday, January 12, 2011

Our Miracle...


So many of you have e-mailed me and asked about Averi, my sweet little granddaughter.   I thought I would just share her story with you - she is truly a little miracle.  Much of what I will share was shared with me by LeAnn, Averi's other amazing grandmother!  You can find her wonderful blog here.  She was very diligent and kept a journal throughout Averi's journey.

Today, our precious granddaughter is 8 years old, and we thank Heavenly Father everyday for her.   Averi had a rare bone marrow disease called osteopetrosis, which was diagnosed when she was 4 months old.  In this disease there is no joint formation and the bones become very dense, taking up the space allowed normally for bone marrow.  If a child lives through it, it can cause blindness and deafness.   At first they felt they had caught it early enough to prevent those complications, but unfortunately, the small hole that the optic nerve passes through, became thick and pinched the optic nerve, causing Averi to be blind.

Averi’s only hope was a bone marrow transplant.  And, to make a long story short, her brother Christian, just happened to be a perfect match,  which was the first miracle, as most siblings are not matches.  Before she could have the bone marrow transplant, she first had to have very aggressive chemotherapy, to kill the bone marrow.   During this time,  there were many complications, which landed her in the PICU. She was in the Primary Children Hospital in Salt Lake City, Utah for 6 months; most of those months were spent in the Intensive Care Unit. She had a tracheotomy and was on the highest level of ventilator called an oscillator for most of the time. Her lungs were compromised and her kidney's failed. At one point, she was on 24 hour Kidney Dialysis. She also suffered with Congestive Heart Failure. The staff told us that she was one of the sickest children that they had ever worked with. At one time she had over 17 different medications going into her IV's.  The bone marrow transplant failed the first time and had to be administered a second time, which was very devistating. 

Averi's father was trying to finish Pharmacy school at Idaho State University, so he could only spend a limited amount of time with Averi’s mother and Averi.  This of course, broke his heart.  Meanwhile they had two other children; Christian, age 4 and Taylor Jo, age 2. LeAnn and I took turns caring for the children and staying with Amber at the Ronald McDonald House in Salt Lake, City.  Amber, being the dedicated mom that she is, only came home one time in the six months.  I have often wondered how she endured such a trial - she never complained.

During this difficult time,  Averi would have very few good days; most of the time, her life was on the edge. There were several times when we were told that it wasn't looking good and we would call James to come to the hospital. He would come and then she would improve a little bit and he would return home and back to school.  Just as a side note, James graduated from pharmacy school, and received his doctorate degree in pharmacy with honors.

She was given many blessings, many prayers were offered in Averi's behalf, not only our church members, but also by many other wonderful friends and family not of our faith.  Many prayer circles were also organized on her behalf around the world.  We fasted and prayed and hoped for a miracle.  On Mar. 20th 2003, James and Amber were told by the physicians that they needed to think about taking her off the ventilator because they felt that there was nothing more they could do for her. They thought that she may have brain stem damage, and possible damage to the thalamus gland. They wanted to decrease her Nitric O2 so they could take her down for an MRI. In decreasing this they told them she might go into a cardiac arrest and they needed to know how progressive they wanted them to be.  Everyone came to the hospital to be with them, pray with them and support their decision.  We discussed it as a family, and felt that they shouldn’t do the MRI test at that time. We discussed it with the physicians and they agreed to wait. The physicians, after discussing the medications with James and Amber,  decided to decrease some of her sedation. This was prompted by James, who had been closely following the medications that she was on. Being a senior in Pharmacy school he was able to keep up with the most current information on all of Averi's medications. 

She received a blessing on March 23rd.   James told Heavenly Father that they were willing to let her go home to be with Him if this was His will for her.   We felt a peace and comfort fill the room at that moment - LeAnn had said all along that she knew in her heart that Averi would be just fine!   We attended a church service that day at the hospital and it was a very sweet experiences, the spirit was so strong in that meeting.  We later received word . . . that very same day, that she was 100% grafted, wish meant that the bone marrow transplant had worked!  This was a great blessing!

From that day on , Averi continued to improve.   She was very active once the sedation was decreased, and the physicians now felt that she didn't have brain damage.  They finally had an opportunity to do an MRI , and it was inconclusive for any brain problems.  She continued on dialysis with a hope that it would improve, but the doctors told Amber that she would more than likely never come off of the dialysis, and that she would eventually have to have a kidney transplant.  Her lungs were doing poorly; but the physicians felt the lungs would improve.

By the end of the month her lung and respiratory function had improved enough that she was taken off the Oscillator ventilator and put back on a conventional ventilator.  And not long after that, she was taken completely off of the dialysis machines.

We knew that she had improved through blessings, faith and the prayers of so many people who loved her, and some who did not even know her, but loved her.  She also was very blessed to have wonderful medical care.  She is indeed our miracle baby.

Averi is doing very well now.  She does not need any medications.  She has some developmental struggles to overcome; but we feel confident that she will continue to thrive and grow into a beautiful young woman.  She has a very small amount of vision, which allows her to see some obstacles in front of her, depending on the light.  If she is in familiar surroundings, she can walk around without assistance, even run!  She goes to regular school and has a wonderful aide who loves her, helps her, encourages her, and teaches her how to function as a blind child.  Her parents and siblings are also amazing - and her biggest fans!

Averi is a very bright little girl,  with so much to offer the world.  In this circumstance faith preceded the miracle.

Averi has played the piano by ear since she was 31/2 years old.  She loves to entertain, and especially loves it when you clap and cheer for her!  She is learning Braille, and is very good at it.  Yesterday, she came home from school and we were so excited because she had passed her spelling test, by typing it out in braille, with flying colors!  She sat down at her braille type writer and typed me two long letters before I had to leave!  I was so excited - this is the first time I have had something that Averi wrote to hang on my fridge!!





Warm hugs,





15 comments:

  1. Thank you so much for this post. Your sweet little Averi is, indeed, a miracle. Dr. Seuss wrote a book, I'm sure for her, "Oh, the Places You'll Go!' I'm sure she will continue to bless your hearts with her accomplishments! God Bless!

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  2. Oh Barb, tears are rolling down my cheeks reading about your beautiful little Averi! What a miracle and a blessing she is and how blessed she is to be in such a loving family and have 2 wonderful grandmothers such as you and LeAnn are! Such a touching and lovely story...thanks for sharing it. Hugs, Cheryl

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  3. This is such a warm and loving post. Averi certainly has been through a great deal. It is no wonder that she is your family's miracle child. She is also a beautiful little girl who just seems to have a natural glow about her. I will pray that she continues to mature and grow strong and that she has no troubles learning. Amazing, incredible, and inspirational post, Barb. Again, thank you.

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  4. Hi Barb, Thank you for sharing Averi's story. She is in deed a very special miracle and such a blessing to all who know and love her. She definitely has a special mission here on earth. She has touched so many lives and sets an example for each one of us of courage, determination, and strength. How wonderful she is learning braille and was able to give you a wonderful "gift" of love to post on your fridge as well as in your heart. Thanks you for sharing this beautiful and tender post. Nola

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  5. Hi Barb Such a beautiful touching post, So enjoyed the special "Gift" of Miracle..thanks
    for sharing Averi's story..
    Blessings /Hugs
    Trish....

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  6. Thank You for sharing Averi's amazing journey of love, dedication, courage and faith with us. Tears have flowed and I have had goose pimples appear as I read about all you, she and her parents have been through. Heavenly Father certainly has a wonderful plan for her life and she has many beautiful things to accomplish here. She is a beautiful child full of tlent. How wonderful she has blessed you with her fridge art!
    Amber had to have picked up her nurturing, loving dedication to her family from you! Thank you for sharing Averi's story with us. Bless your amazing heart!

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  7. Oh my Dear, I am so happy for your family. And so happy for you, personally.

    Gentle hugs...

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  8. I don't think that I knew fully what a long journey Averi had. We sure are lucky to be in her family!

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  9. Thank you for sharing Averi's story. She is an amazing little girl and she has a wonderful loving family to help her and she will never be alone.

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  10. This brought tears, for sure!! What a precious little girl... and that note is priceless! Now I have to go and ask God to forgive me for complaining about simple, stupid stuff. God Bless you and your family.

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  11. Barb,

    What a powerful testimony of God's love and grace to your sweet Averi. I am so glad that she is doing well. Amen!

    Gina

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  12. I can't even imagine! Truly a miracle.

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  13. Melts my heart~!
    Beautiful sweet girl.
    xxxxx

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  14. Barb, I'm visiting from Nola's blog, and my timing was perfect. I so appreciate the sharing of the story of such a brave young miss and her loving family. Yet another reminder of how blessed we are. Another story to help us keep things in perspective. Bless you all! ~karen

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  15. You were truly blesses by this wonderful young granddaughters presence in your lives. I do believe that she just strengthened your own faith as well as being able to accept our Heavenly fathers blessings on this miracle child. God bless you and your families to have came such a long journey and the rewards throughout the trip.
    God Bless you

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