EMYSON AND CO.: Physical therapy

Wednesday, January 23, 2008

Physical therapy

This is a picture of Hunter with his physical therapist, Tiffany. That (cute) mad expression on Hunter's face says exactly how he feels about physical therapy. Right now Hunter is working on head control, sitting, and rolling. Mom is a slacker so Hunter was still in his pjs when Tiff arrived this morning. (At least they were his cool robot pajamas!)

6 comments:

Devri said...: Hi Emily! It's Devri (Halgren) Granados. I saw your blog through Amber's. Your little boy is adorable and congrats on your little girl on the way! I haven't seen you forever! Check out our blog sometime. Keep in touch!; January 23, 2008 at 5:26 PM
Amberlin Gefrom said...: Emily I am so glad you found me and you look seriously amazing and your boy is very handsome! Congrats on having the girl I hope everything goes well for you. I have thought a lot about you actually in the past week..can I get your phone number and or email? also addres yes I am engaged and I would love to send you an invitation and bridal shower invite.; January 24, 2008 at 7:51 AM
Andee said...: What a great picture. I love that face! Let's do lunch soon.; January 24, 2008 at 12:07 PM
J & A said...: Emmy D--I'm so glad you found my blog! It's so fun to keep in touch in the blog world. Congratulations on the baby on the way! I can't believe how big Hunter has gotten since I saw you with him in the grocery store. He was only like 3 months old then. Do you remember that? It's been too long since we've seen each other! We should do something soon. By the way, I met your Aunt Sara a week ago playing stake basketball. She is super fun!; January 24, 2008 at 2:24 PM
us... said...: Hello my name is Brynne Louder, I am a friend of Ashleys and thought I recognized your name. It turned out I did not know you but caught myself looking at the sweet pictures of Hunter and reading your posting on his disability. I just wanted to let you know that I was very touched by what you said and wanted to also tell you that our heavenly father knew where hunter needed to be and just from the short time I read what you wrote he couldn't be in a better place then in your arms. I hope this isn't weird I just really was touched and wanted to let you know!; January 25, 2008 at 9:57 AM
Emilie said...: Hi Emmy! I am so glad that you are officially part of the blogging world! I love you and am so excited for you to be having a little girl! CONGRATS! Your family is adorable. I cried when I read about Hunter- so close to home. What a special boy, and what an incredible mommy you are. I love ya, and hope to see you (in real life) sometime soon.
EM; January 28, 2008 at 3:57 PM

Post a Comment

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, January 23, 2008

Physical therapy

6 comments:

Blog Archive

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

Happiness

Words to live by

Our Family & Friends

About Me

Lissencephaly