EMYSON AND CO.

Monday, May 19, 2008

BIAU 5K Weekend

We had a fun weekend! To kick things off, we woke up very, very early Saturday morning to drive to Salt Lake and run/walk in the annual BIAU (Brian Injury Association of Utah) 5K at Liberty Park. We wanted to participate to support our little buddy Charlie Christensen. We first heard about Charlie on the news the end of April. He is a one year old that contracted pneumoccocal meningitis last winter and spent the next four months at Primary's fighting for his life. He finally left the hospital on May 1st. I don't know how to explain this, but I feel a real affinity now with families that are called upon to endure a child suffering from a physical condition. My heart was instantly touched when I heard Charlie's story. The more I read about the Christensens, the more impressed I was by their optimism and long suffering.

When I heard that they wanted people who supported Charlie to participate in the BIAU race we were all over it. I'm proud to say that Bry and Hunter jogged/walked the entire 3 miles. Me and Grandma Janeen probably logged 2.5 miles (walking very slowly) since we took a short cut after a much needed bathroom break. My thanks to Janeen for being my walking buddy and my cousin Andee to showing up and supporting the cause! The highlight of the race was meeting Charlie and some of his family. It was neat to see both amazing little boys side by side. If you'd like to read more about Charlie, check out his blog: http://www.charliecooperjackjack.blogspot.com/.

Hunter and Charlie
On Sunday we had the traditional Sunday birthday dinner for Bryson at Janeen's. She made lasagne and a yellow cake with chocolate frosting at Bry's request. It was delicious. We managed to squeeze in family nap time both afternoons...life doesn't get much better than that!

Tuesday, May 6, 2008

TWILIGHT MOVIE TRAILER

This is a real tease! It left me wanting so much more! :-)

http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=33429578

Sunday, May 4, 2008

Hunter's 2nd birthday!

Hunter's birthday party was so fun! The Bennett and Durrant families came over to our house for a bbq, presents and cake. We had a great time hanging out with everyone and showing off Hunter in his new chair. I can't believe my sweet little boy is two years old!

The weather was great so we were able to eat and hang out on the deck.

Hunter blowing out the candle on his cake. (Mom looking hugely pregnant!)

Hunter got lots of presents!

Cousin Kyser and daddy helped Hunter open his gifts.

Hunter got a bunch of Cars stuff for his new big boy room.

He loved eating his cake and ice cream and getting it all over his shirt.

New wheelchair

After months of waiting we finally got Hunter's wheelchair the same week he had his birthday. We're really looking forward to incorporating it into daily life.

Dad insisted that we get the cool camouflage wheelchair.

He looks so big when he is sitting in it!

It has a cool tray to put toys and stuff on.

Handsome Hunter and his mom on our first Sunday with the new chair.

Wednesday, April 23, 2008

Spring Break in Las Vegas

Hunter's favorite thing to do on vacation-SWIM!

We stayed right on the Strip. This is the view from the roof of our hotel.

Bry and I in front of the Bellagio. We went to "O" with my parents. It was incredible!

Celebrating Hunter's 2nd birthday early at Grandpa Brad's.

Tuesday, April 22, 2008

Chicks

Our friends, the Bryans, got some baby chickens for their girls to raise and they let us bring Hunter over to see them. It was fun watching Hunter react to their little cheeps and to the feel of their soft feathers.

Monday, April 14, 2008

6 weeks left!

Only six weeks left until my due date! I am feeling moderately uncomfortable and definitely would not mind if she decides to come a week or two early.

In other news, all of the flowers Bryson and I planted last fall are blooming! You can see them in the corner of the picture. I love having a yard and plan on spending lots of quality time in it now that it's warm and I'm done working. I am white as a ghost from winter so the exposure to the sun is going to do me a LOT of good!

Words to live by

"I don't want to drive up to the pearly gates in a shiny sports car, wearing beautifully tailored clothes, my hair expertly coiffed, and with long, perfectly manicured fingernails. I want to drive up in a station wagon that has mud on the wheels from taking kids to scout camp. I want to be there with a smudge of peanut butter on my shirt from making sandwiches for a sick neighbor's children. I want to be there with a little dirt under my fingernails from helping to weed someone's garden. I want to be there with children's sticky kisses on my cheeks and the tears of a friend on my shoulder. I want the Lord to know I was really here and that I really lived." ~Marjorie Pay Hinckley (emphasis mine)

Lissencephaly

The following is a "quick" explanation of lissencephaly, the condition our handsome Hunter was born with.

Lissencephaly is a malformation of the brain in which the brain surface is smooth rather than convoluted. In man, the surface of the brain is formed by a complex series of ridges and valleys. The ridges are called gyri or convolutions, and the valleys are called sulci. In children with lissencephaly, the normal convolutions are absent or only partly formed, so the surface is smooth. Lissencephaly is usually diagnosed based on interpretation of either a CT or MRI scan of the brain. (Hunter was diagnosed from a CT scan.)

Lissencephaly is only rarely suspected at birth or soon after. Some of the problems parents are likely to notice first include failure to develop visual tracking, poor feeding and weight gain, and seizures. In most children, slow development is recognized between 2 and 6 months of age.

Hunter's specific lissencephaly syndrome is called isolated lissencephaly sequence (ILS). Children with ILS have profound mental retardation with abilities limited to brief and inconsistent visual tracking, brief smiling and some spontaneous movements. They are floppy (due to low muscle tone) and significantly less active than normal children. Head control is poor and they often arch their head and trunk backwards. Seizures are a part of everyday life. Anti-seizure medications can help keep the seizures under control, but total control is nearly impossible to achieve. A child with ILS has a much shorter lifespan than normal.

After some genetic testing, we discovered that Hunter's lissencephaly is the result of a genetic abnormality. He is missing a very small piece of chromosome 17. Since neither Bryson nor I have any missing genetic material, Hunter's condition is not hereditary. (Therefore, the chance of any of our other children having lissencephaly is virtually nonexistent.) In Hunter's case, what happened can be compared to a smudge on a Xerox copy. Genetic material, for whatever reason, simply wasn't copied correctly.

I know people wonder if we are able to have meaningful interaction with Hunter. Parenting Hunter is very interactive and meaningful! Not just anyone could step in and know how to read his cues, but I know that we know Hunter and that he has a personality. It is such a joy to care for him. He is the snuggliest, sweetest boy ever! Knowing that our family is going to be together forever, and that we have the chance to embrace a resurrected Hunter someday, makes the tough days worth it.

If you want to know more about Hunter's life, check out his blog.