EMYSON AND CO.: Christmas

Wednesday, December 24, 2008

Thoughts and events from the Christmas season

Here's a little sample of what we've been up to the past few weeks.

This is our new house!!! Bryson has been working hard remodeling some of the interior.

View from kitchen of garage entry and family rm

View from family rm of kitchen and hallway to bedrooms

Heather helping load the kiddos on our way to my family's ward Christmas party.

Me loading my handsome Hunter.

The three of us at the party. Bryson was working on our house so we were missing him.

Eleyna opening her first present on Dec. 23rd to celebrate the Prophet Joseph Smith's birthday.

Bryson helping Hunter open his gift. He got the Children's songbook on cd.

Eleyna playing with the wrapping paper afterwards. What a beautiful smile!

We are so excited about our new place and can't wait to move in--hopefully we'll be in shortly after New Year's. One thing I wanted to mention quickly is how grateful I have felt recently for all of the wonderful people who help me to take care of Hunter, but especially for his therapists from Kids on the Move. My physical and occupational therapists are amazing guys. They truly care about Hunter and all of the children they work with everyday. I know that the Savior has a special love for those precious spirits who struggle with imperfect bodies. I think He, along with me, cries tears of joy when He sees His other children working so hard to help improve the lives of little kids who cannot help themselves. I am so grateful to be able to associate with individuals on a regular basis who understand what it means to be a parent of a child with a disability--it helps me to not feel quite so alone.

Hope you all have a very Merry Christmas!

Monday, January 14, 2008

Christmas 2007

Dad and Hunter with their stockings

Opening presents was exhausting!

Hunter loves Santa

Hello! I have really been looking forward to getting this blog going-and the day has finally arrived! Updating this regularly is one of my goals for 2008. I hope everyone will look in on our family once in a while. Enjoy the Christmas pictures!

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, December 24, 2008

Thoughts and events from the Christmas season

Monday, January 14, 2008

Christmas 2007

Blog Archive

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

Happiness

Words to live by

Our Family & Friends

About Me

Lissencephaly