Friday, January 9, 2009

Issue 33

Ellie Update

As many of you already know, Ellie was in the hospital this week. She had been sick for a couple days with an on-again, off-again fever and her typical asthma response to a virus. We did all her treatments but by the third night of no sleep (for me anyway) she took a turn for the worse. About 2 am I started a new round of asthma treatments and watched her, until a little after 5 am, when her breaths-per-minute spiked to 70. A doctor a long time ago had told me that if she ever got over 60 we should take her in. In all our years of dealing with asthma, this was the first time she had surpassed that scary number. We quickly got dressed, woke Whitney to hold down the fort, and loaded Steve’s little car. Of course it had snowed overnight and Steve’s sedan has a tradition of getting stuck in the driveway. Since the Suburban was in the shop (new transmission – “when it rains it pours”, or something cliché like that) we had to shovel our way out of the driveway at 5:30 am.

We took her to our local hospital’s emergency room where they immediately hooked her up to oxygen and started a battery of tests and chest x-rays. Her oxygen saturation was in the mid 70’s (normal is mid 90’s) which was frightening and they started her on continuous asthma treatments. Ellie was diagnosed with RSV which was causing severe asthma complications. They decided to transport her via ambulance to Primary Children’s Hospital where she would receive the best care. My mom drove right out to be with our other children and my Dad beat us to Primary’s.

Seeing your baby strapped to a gurney with an oxygen tank and loaded into the back of an ambulance is a gut-wrenching experience for a mother. They let me ride with her in back and she slept for a few minutes, her first nap since 2:00 am. Tony and Andy the EMTs were so kind and gentle with her, I really was put at ease. Steve was able to drive behind the ambulance to the Emergency Department at Primary’s. They kept her in the emergency room for several hours while she was evaluated by dozens of doctors, nurses and specialists. They were trying to determine if she should go to the Pediatric ICU or the regular floor. The emergency department decided to keep her until she had improved enough to send her to the regular floor. We arrived and got settled there about 4:00 pm. She was finally allowed to take a decent nap and Steve and I collapsed in chairs thankful for caring family, good insurance and the great care she was receiving at PCMC.

PCMC is really an amazing place. Their motto is “The Child First and Always” and they live by it. As a family, in the past, we have donated to and done service projects for the hospital, but to be on the receiving end is a whole different experience. Ellie received a Christmas Teddy Bear to cheer her, in our first 5 minutes at the hospital. She has received a lovely pink blanket to keep, made by volunteers, that brought such a warm and loving touch to her room. They provided her with stickers and coloring books and crafts when she was feeling well enough to get board. The whole hospital is decorated for the children, and just as Andy the EMT promised, there are butterflies painted on the ceiling. Our favorite special touch is how they feed the children at the hospital. Instead of feeding everyone the same thing, at the same time, something they would probably never eat, they have “room service.” The kids get to pick anything and everything from an extensive, kid friendly menu and order anytime as many times as they want. They said they didn’t really care what they ate, they just wanted to get them eating. After trying most everything dairy free on the menu, Ellie’s favorite things turned out to be watermelon, pancakes, chicken noodle soup, rice krispy treats, potato chips and fruit punch Gatorade.

That first night Steve sent me home to be with the kids and get a good nights sleep (something I’d almost forgotten existed) while he stayed to care for and comfort Ellie. I exchanged him in the morning and was to stay for the next five days (three of them in the same clothes since the weather turned bad and Steve couldn’t bring me supplies). All the nurses commented on how brave Ellie was throughout her treatments, taking medications and blood tests. The hardest thing for her was learning to tolerate the oxygen tube at the base of her nose. She backtracked her second night there, requiring more oxygen, hourly treatments, and respiratory specialists where called in about 2:00 am. Her sensors had been going off all night and there was almost always someone in the room checking on her, so I didn’t even try to lie down. They were trying to determine if she needed more chest x-rays which I knew would likely mean a transfer to the PICU and prayed that we could stay where we were. They changed her oxygen tube that seemed to be having issues and that made all the difference. Everything turned around by 3:30 am and we both slept from 4 am to 6 am when they came in for her next treatment.

After that one set back, she mostly moved forward, albeit slower than the doctors liked. To pass the time Ellie’s favorite things were rising and lowering the hospital bed, superhero cartoons and visits from her siblings. Tuesday night they visited again, and she was so excited playing with them that her oxygen saturation went through the roof. She slept most that night without the help of oxygen, and we had high hopes of being able to go home on Wednesday. During naptime, however, her oxygen saturation tanked again and they put her back on oxygen and cancelled our going home plans. Later that day she was finally given clearance to leave her room to walk the halls if she wore a mask. The walks around the hospital made all the difference in both our moral and in getting her lungs strong and clear enough to be completely off oxygen. She literally danced down the halls enjoying the fish tank, fun ocean wall paintings and especially petting Sadie the Therapy dog.

A huge thanks to our parents and siblings and ward members who cared for our other children, drove them around, feed us and visited us. It made it possible for one of us to always to be with her, and we are so grateful for that!

High rise by Steve L. and Daniel

The boys latest masterpiece. I love their original creations.

Learning Differences

I am a passionate plan maker, and had this coming school semester all planed out to the ½ hour, with alternating A weeks and B weeks, depending on when the kids’ various classes and clubs fell. I’m a mock trial coach for Steve L.’s team, starting a Girl Scout troop for Janey and a Chess Club for the boys. We are working on merit badges and belt loops for Scouts in addition to all our regular school work, classes and clubs. Monday was supposed to be the inaugural day of our new schedule, but Ellie had another plan. Plans and activities all have their places, and we are still looking forward to them, but this week as been a reminder of all those things that really matter – health, family and faith. Things that seemed imperative last week suddenly dropped off in the face of more important priorities.

The one thing that we made sure did not fall out, however, was taking Daniel to his new reading tutor. We discovered last month that Daniel is Dyslexic, and he started tutoring this week with a Certified Dyslexic Therapist who is also a Certified Academic Language Therapist (one of only two in the state.)

I had never even considered that Daniel could be dyslexic no matter how many walls we hit with however many reading programs we tried. How could a child so curious, outgoing, creative, deep thinking, and who is great at algebra, possibly have a “learning disability?” When we hit the same wall at the same point the second time through the same reading program that my other children have had great success with, my concussion convinced me to seek some outside help. We had him evaluated at the U of U reading center in the fall, but they couldn’t fit him into their “struggling reader program” until the summer. Not satisfied with that solution we hired a tutor on their recommended list. He liked going and was making some progress, but I was not satisfied that we had found the best solution for Daniel. I had the impression to just ask my girlfriend Denise about dyslexia (her twins, Daniel’s age, are both dyslexic.) I quickly sent off an email asking what the signs of dyslexia were, not thinking anything would come of it. The next morning her answer changed our lives for the better. I knew within minutes that not only the typical struggles of dyslexia applied to Daniel, but also all of the strengths. As I read through the websites she sent, my understanding of my son and how to best help him expanded ten fold. The reason he still could not tie his shoes, tell right from left and struggled telling time after years of coaching, all suddenly made sense. There was no sadness, or anger only relief and gratitude for finding some answers. Being “right-brained” as we explained it to him and his siblings is what makes him the curious, outgoing, creative, deep thinking, kid that he is. How could I wish that away? Yes, it will take him much longer to learn to read and write, but who said it was a race?

Now, I am not a fan of the current political correctness movement. Calling short people “vertically challenged” and saying gay people have “alternative lifestyles” makes me grumpy to say the least. I believe in calling a spade, a spade, so to speak. In the reading and research I have done since that morning of revelation, I have come to understand that dyslexia is not a disability, but a learning difference. Here is a definition I found of the cause of dyslexia.

"Dyslexia is an inherited condition. Researchers have determined that a gene on the short arm of chromosome #6 is responsible for dyslexia. That gene is dominant, making dyslexia highly heritable. It definitely runs in families.

Dyslexia results from a neurological difference; that is, a brain difference. People with dyslexia have a larger right-hemisphere in their brains than those of normal readers. That may be one reason people with dyslexia often have significant strengths in areas controlled by the right-side of the brain, such as artistic, athletic, and mechanical gifts; 3-D visualization ability; musical talent; creative problem solving skills; and intuitive people skills.

In addition to unique brain architecture, people with dyslexia have unusual "wiring". Neurons are found in unusual places in the brain, and are not as neatly ordered as in non-dyslexic brains.
In addition to unique brain architecture and unusual wiring, f/MRI studies have shown that people with dyslexia do not use the same part of their brain when reading as other people. Regular readers consistently use the same part of their brain when they read. People with dyslexia do not use that part of their brain, and there appears to be no consistent part used among dyslexic readers."

Because their brains function differently, many dyslexic people struggle or fail in school with their one-size-fits-all approach to teaching. About 10% of people are dyslexic, but many are undiagnosed, believing themselves dumb or incapable, when what they need is to be taught in a way that their brain can best process the info. Being different doesn’t make you disabled, but it can make you amazing. Here is a short list of people that succeeded because of their dyslexia, not in spite of it. (There are many, many more):

Leonardo da Vinci, Beethoven, Babe Ruth, Walt Disney, Henry Ford, Charles Schwab, Alexander Graham Bell, Thomas Edison, Albert Einstein, Sir Isaac Newton, Louis Pasteur, Hans C. Anderson, Bill Cosby, Victor Hugo, James Stewart, Ansel Adams, Lewis Carroll, F. Scott Fitzgerald, General Patton, Winston Churchill, Thomas Jefferson, George Washington.

How could you say that any of these influential people were disabled? So by calling dyslexia a “learning difference” or being “right-brained” at our house I’m not trying to minimize the amount of work it will take, on both our parts, for Daniel to succeed at reading and writing. I’m not trying to be cute, in denial or politically correct. I’m just calling a spade, a spade.