EMYSON AND CO.: Eleyna's 1st birthday

Monday, July 6, 2009

Eleyna's 1st birthday

Geez, I forgot how busy summer is. This post is very belated. On May 29th our little 'Leyna turned ONE. The week of her birthday we had a swim party at the Heaton's pool to celebrate. It was so fun! This is a picture of the cake I made. It was so yummy. I'm very proud of how it turned out.

Eleyna was pretty timid when I set her piece of cake on the tray. She didn't really dig in like some kids do. She ate it very daintily.

Cute little chipmunk cheeks full of cake.

We asked everyone to buy her clothes for her presents. Her wardrobe got a full makeover. It was great.

Aunt Dede got Eleyna a blowup princess chair. They are such cute friends.

It was a wonderful party for a wonderful little girl. We just adore Eleyna. I'm so grateful Heavenly Father sent her to our family. She makes us laugh everyday.

Right now Eleyna likes to:

Walk/run everywhere

Squeal in a really girly, high-pitched way

Point to things she's interested in

Use a fork to feed herself-still working on the spoon

Eat-she is such a good eater!

Play the "chase me" game with mom/dad

Bring mom/dad books to read

Hug Hunter

Pull up Hunter's shirt and grab his g-button

Push things around like strollers, Hunter's wheelchair and our trash cans

Ride in her daddy's truck

Be outside

2 comments:

Melanie Henage said...: That cake is so cute!!! Good job Em - it looks awesome!!; July 6, 2009 at 9:01 PM
Amberlin Gefrom said...: How fun! She is so beautiful. It's fun to kind of get to watch her grow up!; July 7, 2009 at 9:59 AM

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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.

EMYSON AND CO.

Monday, July 6, 2009

Eleyna's 1st birthday

2 comments:

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