Friday, November 12, 2010

New Moon~1 month anniversary!

Think About a Thank You

Imagine having your daughter’s doctor also be her Bishop. Talk about efficient care! Mary has had great personal care from her doctor. We had the additional blessing that the neurosurgeon who specializes in her illness was on call that late Saturday night. These experts spent years preparing to save people like Mary.
My goal was to record every nurse's name that worked with Mary. I cannot say enough about how wonderful her nurses and CNA's were. Amazing. Most of them helped Mary through some very dark times. Some made the difference between peace and anxiety for not only Mary, but for each of us. 

Denise--1st Legacy Triage nurse; David (ambulance tech on route with Mary and I) who stayed with us for an hour; Tad--Mary's 1st nurse 3 nights in a row.
Cindy, Cate, Kay, Jayde, Barbara, Andrea, Andy, Dan, Yelena, Olya, Amber, Amy...I'm forgetting a few.
Some nurses gave me great advice in those first days when they could see ahead for me: 'get your sleep, let others help you...'
The CNA's, who are paid far below their value, were often the most comforting to Mary:
Rachel, Kimmy, Kim, Whitney, Sofie, Virgi, Vladimir, Alesya, Dixie...brushing her hair, held her hand, laughed with her, helped her get in and out of bed, fix her lines, clean her messes, change her bedding. 
It is quite unfortunate to hear that the ICU has lost the CNA staff. Starting the week after Mary was discharged, they are no longer assigned to the ICU patients. There has got to be a smarter way to save a buck.

Kimmy & Mary, ICU CNA

Mary & Rachel, ICU CNA

Mary & Cindy, ICU RN 

Super Computer

Brad graduated in computer science. He used to tell me about Super Computers and how they would fill entire rooms. In just a short decade, nearly all of technology has rapidly adjusted from huge to minute. What used to fill an entire room to run complicated systems, can now fit in your palm. There still are Super Computers, but nearly all of technology has adapted, improved and excelled with time.
Mary’s brain is a ‘Super Computer.’ We started seeing little signs of it when she was much younger. Her soccer coach at age 5 told us that Mary is left-footed. She’s right handed, but to be left-footed (along with super fast!) in soccer is a huge advantage. Age 8 she began learning French in the mornings at her school. She has spoken French ever since. During her high school years, we realized she may be close to having a photographic memory. She had the lead role in 3 school plays. After 2 weeks, as we would review the script with her, we realized she not only had her part memorized, but every other part!
This last semester at BYU she was struggling with her political science class. The professor gave each student a copy of the previous semester’s final exam to prepare for the final. Mary called me: ‘Mom! We get to study the previous final! This is perfect for me. I will just memorize the whole thing.’ 225 questions~memorized~in 2 days. She got a 92% on the final.
Because Mary was born with an AVM in her left temporal lobe, her Dr thinks that her brain had to adjust from the beginning. This AVM took up space and so the other sections of her brain may have taken on some of the temporal lobe’s functions. This may be the reason why Mary was able to speak so well, so quickly. He reminds us that this was a ‘significant bleed and the blood clot is still large.’

Her brain is a Super Computer. It has adapted and adjusted to the AVM for the past 20 years. While the temporal lobe heals, the rest of her brain is helping to perform those functions. That’s the science of it. other words, it’s a miracle.


Once upon a time, there were 2 young boys, ages 5 & 6. They grew up together in the same town, attending the same schools and church. They shared all the same interests. They both became high school drum majors. They attended the same university. Their wives became friends. After college, they all ended up living a few minutes apart in the bay area of CA. They had their first babies, who spent years enjoying the same parks together. Their next babies were born in the same hospital a month apart. Then they had career changes and moved apart, 1000 miles from each other. But the friendship continued as best it could. 19 years later, those 2 girls born so close together, would become best friends. They were accepted to the same university that their fathers and mothers attended. They shared the same whacky sense of humor that their fathers also share. They helped each other have a fun first year 800 miles away from their homes. And then Mary came home for the summer. And then came June 19, and 30 more life changing days.

Imagine how happy Mary was to see Hannah, on her front porch last weekend! What a wonderful surprise. There is no better ‘medicine’ than a friend. This challenging week really did have a happy ending for Mary.

Mary & Hannah

Head Games
There is an unsung hero hanging around here. He has been in the shadows for much of the past month. He was ‘passed’ around from family to family. He didn’t see much of us or Mary in the first few weeks. But he has become a vital part of Mary’s healing process.

Thomas is only 13, but he has taken on some important roles. Mary has weekly speech therapy and one assignment is for her to do 30 minutes of online therapy work everyday. Thomas is her coach! He helps her understand the process and answers questions. He reports to us and to her therapist on her progress and struggles, if any. This allows one thing to be off of my ‘plate.’ But more important, they’re getting closer as they work together. Sibling rivalry became teamwork. Problem solved!

Think you’re so ‘smart?’ Try these:

Mary & Thomas therapy

New Moon
Mary is doing great. Let me start there. Everyday we remind each other of how many wonderful blessings there have been from the very first day. She beat tough odds. It could have been much worse!

But, this past week brought new challenges. Several episodes a day of ‘shaky’ vision: ‘Mom. There’s an earthquake goin’ on with my eyes.’  More pain but pain meds not working for a full dose. Increase in heartburn: ‘Be honest. Am I going to throw up?’ Feeling exhausted, but not being able to fall asleep. So we adjust. We get creative. We find new ways to give relief and still have some fun. It is not hard to have fun with Mary! 

She is working hard to get well. Sometimes ‘working hard’ means she has to nap. Or choose eating over talking. Or get to bed at the early hour of 11pm! Or eat when she is not hungry. Or miss church~again. Or have to cancel a visit because ‘there’s an earthquake in my eyes!’ 

But Mary will get well. She will beat this. Did you ever see her on stage? Did you ever see her play soccer or run a race? Have you ever joined her in a debate? Just watch her! She’ll be the ‘Female, age 19; less than 1% of the population with an AVM; less than 1% of those, who survived a significant bleed in the left temporal lobe; and not only lived but recovered 100%.’ 

“Go Mary! Go Mary! Go Mary!”

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