EMYSON AND CO.: Life is beautiful

Thursday, September 9, 2010

Life is beautiful

We've had some good moments lately. On Wednesday, Hunter returned to preschool. We went as a family to drop him off for his first day. I'm happy he gets to have this experience. I'm sure he enjoys getting out of the house a bit and interacting with some different people. I'm holding my breath that he can stay healthy.

It's so fun living close to my parents. We love it when they stop by to visit. This picture really shows how big Hunter is getting. He looks huge even on tall Grandpa Durrant.

Sometimes these crazy people tag along when grandpa and grandma come over. I have great siblings-Eleyna agrees!

Eleyna is getting really excited for the new baby. Once we got out the bassinet, baby swing, Bumbo, etc. I think the whole thing really clicked for her. She loves it when my midwife comes and we get to listen to the baby's heartbeat. She always lays right by me during the whole exam. Here she is practicing her mommy skills with Dora.

The other day I turned on "Finding Nemo" for Eleyna to watch and she promptly snuggled in right next to Hunter on the couch. It's been so tender for me to watch a relationship develop between these two. She has become quite concerned for her brother and it really melts my heart to see it.

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." -Sir Thomas More

3 comments:

Stutelberg Family said...: I love the pics! Can you believe it is time to start preschool again...where did the summer go? :); September 12, 2010 at 8:13 PM
Holly said...: Eleyna is such a little girl and a sweetheart! Hooray for preschool. I love that quote btw I think I'm going to steal it. :); September 13, 2010 at 1:31 PM
j + s said...: They are so big :) Rockwell's a lucky guy to have siblings like that; September 23, 2010 at 3:38 PM

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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.

Thursday, September 9, 2010

Life is beautiful

3 comments:

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