EMYSON AND CO.: June 2010

Monday, June 28, 2010

Friendship

I've been thinking about friendship recently. If pressed how many friends would you say that you had? What is a real friend? Two weeks ago we had a lesson in SS about David and Jonathan. Some of the scriptures we read that day really impacted me. As usual the scriptures gave a voice to my own feelings in a much more eloquent manner than I could ever express.

"And it came to pass, when he had made an end of speaking unto Saul, that the soul of Jonathan was knit with the soul of David, and Jonathan loved him as his own soul." (1 Samuel 18:1)

Then, in 1 Samuel 20:42 it says: "...The Lord be between me and thee, and between my seed and thy seed for ever."

I'm so grateful for the friendship of these two amazing women. I feel like our souls are knit together and I know the Lord will be between us forever.

Heavenly Father helped us find each other and I'm amazed at His direct involvement in my life.

Tuesday, June 15, 2010

Ms. Personality

Sometimes I wonder what my little girl will grow up to be...

since she enjoys dressing up like a princess,

and a construction worker.

I can't wait to find out!

More birthdays

We got to celebrate two more birthdays in May. Bryson's birthday was first. His siblings all got him some new waders for fishing and Janeen made him an entire turkey dinner for his Sunday birthday meal.The day of his birthday we went out for a special seafood dinner at the Market Street Grill-just the two of us. (The food was delish!) We also got to see the movie Date Night the weekend of his birthday. Thanks to everyone who helped make it such a fun birthday week!

Eleyna's birthday came next. We had a fun Dora-themed birthday party for all her little friends. Below is Maya, Aliyah and Eleyna eating their Dora cupcakes.

Later that same evening we did a barbeque with our families to celebrate. Eleyna got tons of new toys! Some of the highlights included a little cooking set, a Dora dolly, a highchair to feed her babies in, a Dora trike, a Disney princess book, a three little pigs story set (with pigs, the big bad wolf and all their houses), and some new blocks with a wagon to put them in. This last month, her vocabulary has really exploded. She can count to 10, sing most of "Twinkle Twinkle" and "Jesus wants me for sunbeam", and say a prayer (with help). We love hearing her try to say "Pirate Island" and "Sarah". She also has cute phrases such as "Hold tight me!" and loves to say thank you. She is such a delight right now!

We are so lucky to have her!

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, June 28, 2010

Friendship

Tuesday, June 15, 2010

Ms. Personality

More birthdays

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

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Words to live by

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Lissencephaly