Thursday, August 12, 2010

Our Granddaughter, Averi; playing The Battle Hymn of The Republic~

 First Rendition of the Battle Hymn Of The Republic - Second Rendition; Averi's first attempts at singing while playing.
She started playing the piano by ear at age 3 1/2
Our precious granddaughter Averi just turned 8 years old. 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 are dense. It can cause blindness and deafness. At first they felt they had caught it early enough to prevent those complications.
Our son James told us that one night while in the hospital they spent the entire night crying and talking through the possibility they could lose her and they had read everything possible about the disease. Their only hope was a bone marrow transplant. Her brother Christian had a 100% bone marrow match which was the first miracle. She first had to have chemotherapy and during this there were complications. She was in the Primary Children Hospital in Salt Lake City, Utah for 6 months; most of those months were spent in the Primary 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. She had to have 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 17 different medications going into her IV's.  The bone marrow transplant failed the first time and had to be given again. She did have side affects from the transplants. She eventually became blind from the disease. 
During this time by son, Averi's father was trying to finish Pharmacy school at Idaho State University in Pocatello, Idaho. He couldn't be with Amber and Averi. Meanwhile they had two other children; Christian, age 4 and Taylor Jo, age 2. Amber's mother and I took turns caring for the children in Shelly, Idaho and then staying with Amber at the Ronald McDonald House in Salt Lake, City.
During this difficult time Averi would have a few good days; but mostly her life was on edge most of the time. There were several moments when we were told that it wasn't looking good and we would call James to come up. He would come and then she would improve a little bit and he would return home and back  to school.
She was given many priesthood blessings, prayers were offered by not only our wards; but also many who are not of our faith prayed for her and held prayer circles. Her name was put on the prayer rolls in our Temples. We also had many of our faith fasting and praying for her. 
-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. They thought 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. I was visiting for a few days my mother who lived in Las Vegas. I flew back and My husband Roger flew back to Salt Lake from a work trip in New Jersey.  Amber's parents Bob and Barbara came up from Idaho. We had a good discussion with the children and we all felt that they shouldn’t do the MRI test at this time. We discussed this 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 following closely the medications that she was on. Being a senior in Pharmacy school he was very updated on the drug choices. Both Amber and James had been proactive in finding a Physician at St. Jude Children's hospital who had experience with this disease and he became a consult on her case. 
She received a blessing on March 23rd. James told Heavenly Father that they were willing for her to go home to him if this was his will for her. He then gave her a marvelous priesthood blessing which brought us all to tears. We felt a peace and comfort fill the room. We attended a church service that day at PCH and it was a  very sweet experiences. The spirit was so strong in that meeting. We later received word on that day that she was 100% in grafted which was a great blessing.
After that Baby Averi continued to improve. She moved all over once the sedation was decreased so the physicians now felt that  she didn't have brain damage. They did an MRI finally and it was inconclusive for any brain problems. She continued on dialysis with a hope that it would improve. Her lungs were doing poorly; but the physicians felt the lungs would improve.
By the end of the month her lung and respiratory function improved and she was taken off the Oscillator ventilator and put back on a conventional ventilator.
We knew that she had improved through priesthood blessings, faith and prayers and good medical care. She is our miracle baby.
Just a few thoughts for the months of February and March. Those two months were some of the hardest in my life. It has been difficult to see little Averi so sick. However, I felt at peace and knew that she was in the hands of our Heavenly Father. I feel she was being watched over; Amber had felt this also. I have had many spiritual moments and I have plead with the Lord many times even kneeling on the bathroom floor for her life if it was his will. We are all in agreement that Heavenly Father’s will would be done.
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 do well. She has a small amount of vision so that she can see obstacles in front of her. If she is in a area that she is familiar with she can walk around without assistance. She is in a regular school and has an aide to help her. She is being taught how to function as a blind child.
In this circumstance faith preceded the miracle. She is still here due to the many priesthood blessings and prayers offered in her behalf. 
The one really awesome moment was when she started to play the piano by ear. She is incredible and knows many pieces; but she only plays them if she wants too and she adds her own rendition. 


Marie said...

What a treasure little Averi is! How amazing her story! She is an inspiration to me and obviously a very talented child. Thanks so much for sharing her story with us!!

amber and james said...

That is an awesome journal entry Mom! Bitter-sweet memories for sure! Thanks for sharing this. We love you!

Barb said...

Hi LeAnn,

Right after I blow my nose and wipe my tears, I will tell you how much I love and appreciate you and Roger. I am so glad you kept a journal during that very difficult time in our lives!

I truly don't think we would have our little angel if it was not for faith, blessings and prayer. It was during one of those really bad days, that I spent most of the day on my knees, that I truly realized the power of the priesthood, and the many, many blessings we received, and still receive each day from loving Father.

Averi is such a blessing to us all - I can't even imagine life without her in it! Every hug I get from her is so precious, and with every hug I am reminded of what a great responsibility Amber and James have, and what wonderful parents they are. Averi really is a miracle!

Thank you so much for posting about our sweet Averi.

Love you,

Sue said...

What an amazing, amazing story LeAnn. Thanks so much for sharing it with all of us.

Your granddaughter is simply beautiful.


singing/granny said...

Thanks so much for sharing! You really are an example of faith and good works. We each have a mission here, don't we? I always enjoy reading your blog! All the Best! Melody

The Farmer's Daughter said...

Hi LeAnn, what a moving story, it has brought me to tears. Your precious granddaughter is so very special and I know that you cherish every sweet little hug from her! Praise the Lord for your precious miracle, Averi! Thanks for sharing this. ~Cheryl

Dolly said...

I loved this post-and Averi's story is so amazing!!!! Leann, thanks for sharing your family with us. What a privilege it is to meet you over the internet:) I am truly so touched by your testimony *Incredible*

Rachael said...

I never knew the whole story, thanks for sharing! Averi's story is amazing and inspiring!
James and Amber's faith and strength is inspiring!
Much love,

Laurie said...

Wow, what an amazing little girl. She's blessing the lives of many - even strangers - with her story and her unique talents!

Kelli said...

Thanks for sharing Aunt Leann!!!! So moving and so spiritual.... sniffle sniffle sniffle. What a BLESSING..... Averi is an angel! Love you guys!!!

Autumn said...

What a beautiful miracle. God is great, and so are his angel children.

Mostly Diane said...

Thanks for sharing that miraculous story.


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