EMYSON AND CO.: My baby is growing up

Tuesday, February 17, 2009

My baby is growing up

Eleyna can go wherever she wants these days. She crawls up on her hands and knees now instead of on her tummy.

If I turn my back for a minute, sometimes she disappears and I find her in the shoe cubby below the lockers...

Or on top of one of her toy bins in the playroom.

She has two little teethies on the bottom and she really likes chomping down on biter biscuits.

Before we moved out of my parents' house she started standing up on the furniture.

I'm sure it won't be too long before she is walking--and she is still only nine months old!!!

We sure love our little girl!

9 comments:

Suman Family said...: em - i see so much of you in here! she is beautiful. they grow up so fast. my daughter was a quick mover too and taking steps around 10 months. it's exciting!; February 17, 2009 at 9:14 AM
Amberlin Gefrom said...: She is so beautiful already too!; February 17, 2009 at 9:17 AM
Elder Richey said...: I think she looks just like you in the picture where she is standing by the couch. Cute girl!; February 17, 2009 at 10:45 AM
Rochelle said...: Oh my what a beautiful girl you have. She is getting so big and is adorable. Thanks for sharing these cute pictures.; February 17, 2009 at 11:24 AM
Des said...: She is so cute!!! I can't believe how fast they grow up. I swear Kale grew overnight! How is the house? Chan and I were talking about how we would like to come by and see it (and you) sometime. Hope all is well and I will talk to you later!; February 17, 2009 at 11:29 AM
Lexi said...: I like the new name of your blog, and I love the pictures of mini-Em. She totally looks like you! Lucky girl got your pretty eyes. She looks like a lot of fun.; February 17, 2009 at 12:14 PM
Ashley said...: She looks like her mommy to me. Such a fun age. Look out, because once they start walking that early, they just continue to grow up and get into everything!; February 17, 2009 at 1:53 PM
Lisa said...: She is so cute! I love the messy face picture!!! You need to post some pics of your new house!!; February 17, 2009 at 3:21 PM
Durrant Family said...: Wow! Those were cute pictures!; February 22, 2009 at 3:47 PM

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.

Tuesday, February 17, 2009

My baby is growing up

9 comments:

Blog Archive

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

Happiness

Words to live by

Our Family & Friends

About Me

Lissencephaly