EMYSON AND CO.: Our little vampire baby

Wednesday, April 1, 2009

Our little vampire baby

I love Eleyna's smile right now. Her two bottom teethies came in first and I just assumed that the next ones to arrive would be her front two. This was not the case. She got her upper lateral incisors-the two teeth on either side of where her front teeth will eventually be-instead. She looks kind of like a little vampire. It is pretty cute and funny.

Our other big news is, she's walking! Granted she only manages a couple of very wobbly steps at a time, but it is still totally thrilling. She is only 10 months old too. Yea yea yea for 'Leyna!

Eleyna and Bry playing/taking pictures. I love her smile in the last one. Such a happy girl!

9 comments:

Lexi said...: Maybe you should call her Renesmee now - vampire teeth and already walking!

She looks like a lot of fun.; April 1, 2009 at 2:15 PM
DnK said...: That's how Asher's teeth have come in too. It wasn't what I was expecting either.

What a cutie your little girl is! It's great that she is walking. I was so glad when Zoe quit crawling and starting walking, though it did enable her to get into so much more, she stayed cleaner.; April 1, 2009 at 6:18 PM
Des said...: She is so cute!!! It was so fun to see you. I will call you and we can get together next week!!!; April 2, 2009 at 7:23 AM
Kate said...: Well shoot, I need to get me one of these Vampire Babies...they are sure cute!

And are you sure you weren't 17 when you got married...that's the way I remember it ;) It's ok, at that same shower the "ward ladies" were probably saying things like, "You rememeber Katie Gildea right....did you know that she is 26 and single. I just feel horrible for her..."

I don't know if I would rather be the teen bride, or the one that they worry will never be a bride. Kind of a toss up! Ha ha!; April 2, 2009 at 11:54 AM
Lindsey F. said...: That's so cute!! Zander's came in the same way!; April 2, 2009 at 3:17 PM
Andee said...: oh my heck! Walking! That is so great! I'm excited to see you guys again and see that little gal in action! Love you guys; April 2, 2009 at 8:11 PM
Elder Richey said...: I think she looks like you, Emily. Precious!; April 3, 2009 at 9:42 PM
Babata said...: LOVE the teeth! :) Also, I just love playing ball with you...when are we gonna start going in the mornings...what do you say?; April 6, 2009 at 7:18 PM
Unknown said...: ahhh that's super super cute and at 10 months that's way impressive!; April 8, 2009 at 9:10 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.

Wednesday, April 1, 2009

Our little vampire baby

9 comments:

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