Happy 18th Birthday To Averi; Our Priceless Treasure

Our precious granddaughter, Averi, is 18 years old today. We wish her a spectacular birthday celebration. She holds a special place in our hearts and is a treasure to our family. 

Averi is a special needs child. She is blind and autistic. Right now, Averi has been going to school in a regular school environment. She has an aide with her all day. In the schools she has attended, the students love her. Averi is loved wherever she goes. Averi is basically happy all the time except for a few stubborn moments. She has some unique skills with numbers and music. When you first meet Averi, she will touch your hand and ask you, your birthdate. She can then tell you the exact day of the year your birthday, anniversary, or special day will be on. Once she has your birthdate, she will generally identify you by that. I am an 11-20. Although she does call me Grandma too. She has also learned to read Braille. She can take care of many of her daily needs and get herself ready for school. 

Averi has several good friends, one is a piece of cloth that she has had since birth, which she calls 6th. Other stuffed animals and objects are called by numbers too.  Averi can play the piano by ear and makes her own editions. Averi loves music and listens to it a lot and enjoys dancing to music too. She loves to spin in a chair for hours.  

The story below will tell you about the rare disease she had. We call Averi our miracle girl; because that is what she is. 

 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. Averi had chemotherapy, and there were complications. She was in the PICU at Primary Children's hospital in Salt Lake City, Utah, for 5 plus months. 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 from 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 effects from the transplants. She eventually became blind from the disease. Later on, she was diagnosed with Autism. The Physicians were not clear on what caused that. 

During this time, my 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.  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 challenging time, Averi would have a few good days, but 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 priesthood blessings, prayers were offered by not only our church congregations 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 had many of our faith fastings and praying for her.

On March 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 reducing this, they told them she might go into a cardiac arrest, and they needed to know how progressive they wanted them to be.

At this time, I was in Las Vegas visiting my mother, so I flew back, and My husband Roger came 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 debating the medications with James and Amber, decided to decrease some of her sedation. This was prompted by James, who had been following closely the medicines 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 lovely experience. 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 the hope that it would improve. Her lungs were doing poorly, but the physicians felt the lungs would heal.

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, prayers, and proper medical care. She is our miracle baby.

Here are a few thoughts for 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 pleaded 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.

In this circumstance, faith preceded the miracle. She is still here due to the many priesthood blessings and prayers offered on her behalf.  

Averi truly is our priceless treasure. We have learned so many lessons from being with her as a special needs child. She has taught many others how to be more kind and caring for those that have various needs. individuals that take time to know Averi love her.