EMYSON AND CO.: A quick glimpse...

Been wondering what the Bennetts have been up to? Here's a very brief review. This is Eleyna with her cousin Kyser at Dave's (Bry's bro) wedding.

The whole family looking pretty for the camera at the reception.

Eleyna is much more aware of Hunter lately. She surprises me with her love and concern for him. So cute!

Bry and I on our 5th anniversary. We had dinner at Communal. Love that place!

The family on Thanksgiving at Aunt Mary's house.

Mom and Hunter on Thanksgiving.

Eleyna has taken to walking around in mom's shoes recently. I sure love this little girlie!

Bry and Hunter on a usual evening at our house. Bry's snuggling skills are legendary!

This is me and the kiddos at the Make-A-Wish family fun run. I ran the 5k. One of my proudest accomplishments of '09.

Eleyna with her new uncle, Danaan Clarke, and my sis, Heather, on their wedding day. I finally have a married sibling-yea!

Momma and her boy.

Eleyna in her new snow duds. What a sweet smile she has!

We've had tons of snow to play in this winter. (Which makes my snowboarder hubby happy and me unhappy at the same time.)

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.

7 comments:

Amberlin Gefrom said...: so fun! and so glad for the update! YOu are looking good girl!; January 9, 2010 at 10:15 AM
Becky said...: BEAUTIFUL! I'm so glad to hear from you!!! :) Your pictures are darling...keep it up girlfriend. xoxo; January 9, 2010 at 12:04 PM
Lexi said...: I loved the update! As always, you look stunning. Congrats on 5 years by the way! I remember going to your wedding dinner at the Wilkenson center all those years ago. Now here you are, a husband and two beautiful kids later.

You are such a sweet mom to Hunter. He's a lucky boy to have such great parents and a lil' sister who love him so much! And you guys are lucky to have such a sweet, handsome boy to love.; January 9, 2010 at 12:37 PM
Des said...: Fun family pictures! Em, you look so good! Your family is as cute as ever!!!; January 9, 2010 at 7:26 PM
April said...: I don't know how I missed this post :) Such beautiful pictures! You are gorgeous! I love all of the snuggly pictures. You have so much love in your little family! LOVE YOU! xo; January 12, 2010 at 8:08 PM
Rochelle said...: Such adorable pictures. Love seeing the updates on your cute family.; February 22, 2010 at 3:45 PM
Bybee's said...: so glad you posted@ i love to see your pictures! miss you guys; February 22, 2010 at 10:42 PM

EMYSON AND CO.

Monday, December 28, 2009

A quick glimpse...

7 comments:

Blog Archive

Bryson, Emily, Hunter, Eleyna, Rockwell & baby Bria

Happiness

Words to live by

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About Me

Lissencephaly