EMYSON AND CO.: Holly and Rowen

Monday, November 9, 2009

Holly and Rowen

Good friends make life so much more enjoyable! Lately, we've been able to spend some time with two dear friends, Bryson's cousin Holly and her son Rowen. Our activities have consisted of lap time at the Orem and Provo libraries, and trips to the Bean museum and Thanksgiving Point. I love hanging out with Holly! We have a lot in common, but my favorite thing is probably our shared love of good books. Holly is very understanding of my need to do things at a certain pace because of Hunter and accomodates me so that we can get together. That means a lot to me. At the Bean museum the kids got to feel different animal skins,

see pictures of animals,

and even meet a friendly lizard. Hunter was the only one brave enough to actually touch it (with some help from mom).

We saw lions and tigers and bears, oh my!

On our visit to Thanksgiving Point's Farm Country the kids got to go on a pony ride. It was a little scary at first but by the end Rowen didn't want to get off.

Eleyna didn't want to touch the saddle for some reason so I had my hands full making sure she stayed on the pony during her ride.

Thanks Holly and Rowen! We sure love you guys.

5 comments:

Becky said...: What FUN! :) Tell Hunter I would've been right by his side when it came time to hold the lizard! Good for him!; November 9, 2009 at 5:31 PM
Holly said...: A post named after us! I'm honored. Thanks for the pics and the shout-out!; November 9, 2009 at 8:04 PM
Jessica said...: Ahh! I love you both. I'm glad you are getting to do so many fun things together! You both have the cutest kids ever.; November 9, 2009 at 8:19 PM
April said...: I'm so glad you've been able to get out and have some fun outings! Good friends are real treasure aren't they :) I know, because I know YOU!!!
Love ya; November 9, 2009 at 8:56 PM
kevin and heather said...: I wish I lived in Orem so I could join you on all your play dates! It was so fun to see you and your kids at the petting zoo. I can't wait until we do it again!
Heather; November 9, 2009 at 11:20 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.

Monday, November 9, 2009

Holly and Rowen

5 comments:

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