EMYSON AND CO.: July 2010

Tuesday, July 20, 2010

4th of July

The Saturday before the 4th of July we got to go swimming at the Lindon pool with our cousins, Kyser and Nash. Afterwards, we went to their house for a bbq and presents for Nash's 3rd birthday. Bryson had to go patrol at the apartments once the Stadium of Fire started so we didn't do any fireworks that night.

(My little pool bum-so cute!)

However, we made up for it on Monday. Leyna was a little scared during the first couple of fireworks, but she warmed up once we got around to the sparklers. She thought those were lots of fun!!!

Uncle Ryan and Grandpa came down to watch the fireworks with us. It's so fun having family close by.

Monday, July 19, 2010

Boating on Utah Lake

Eleyna LOVES to go out on the boat this year. She has a little hippo floatie that we put her in so she can swim off the back of boat with daddy. Even when it is choppy she wants to be in the water in her hippo.

She's fearless. We put her on the tube for the first time the other day and she did awesome. Smiled the whole time!

She's only two and I'm amazed that she is so adventurous. It is so fun to watch her experience things for the first time.

Hunter hasn't enjoyed the boat quite as much this year. As he has gotten older he has started to get overstimulated a lot easier. The heat, sunlight and movement is a tough combination for him to handle. We still like going out as a whole family though so sometimes we bring him anyway. Luckily he has a special spot that we can keep shaded for him. Thanks for being such a trooper little man.

Baby Eisley

(Doesn't Bryson look handsome in this picture? What a hunk!)

This is Bry and Eleyna with our new little niecey Eisley. She was born on July 9.

Holding Eisley made me ache for my own sweet baby. She's so cute!

Hunter isn't going to know what hit him when our little one makes landfall. However, I think it is going to be an even tougher adjustment for our toddler who is something of an only child at this point.

Nash and Eleyna were being too crazy to really notice the baby much.

Cousins are so much fun!

Sunday, July 18, 2010

Laura's wedding

My sister Laura got married the end of June to Spencer Kirton in the Salt Lake temple. It was such a wonderful day! Now, whenever Eleyna sees a picture of that temple she says, "Laura married." She will also tell you that it is "Jesus' house."

Eleyna pretending to be the bride with Grandpa Durrant.

No boyfriends for you!

The happy couple

It was really hot the day of the wedding. They got married just before lunch so we were taking pictures in the dead heat of the afternoon. We tried to spare Hunter the worst of it but it was a challenge keeping him cool. At least he was in his new stroller which provided some shade and was much more comfortable than the wheelchair would have been. He was even able to take a little nap.

The only man I want in her life--maybe forever. :)

Love this group!

I have two sisters married finally! It's so great to have siblings in the same stage of life as me.

Now I just need them to start having babies so my kids can have some cousins.

Thursday, July 15, 2010

Lunch in Midway

Twice a week, Bry wakes up early (before me and the kids) and heads up to Midway to work a cabin remodel job. Eleyna always misses seeing daddy at breakfast and lunch so we decided to meet him up there for lunch a few weeks ago. We got some pizza and salad to go and took them to a park near the job. There were ducks and a lake AND a playground!

Isn't it amazing to watch a child experience such joy over simple things? I want to be more like that.

Saturday, July 3, 2010

Catch up - St. George trip

The first weekend in June, we packed up our little family (no small task) and headed down to St. George for some r&r. We stayed at a condo in Las Palmas. It was perfectly situated, ground floor, walked right out to the pool and a playground. Eleyna was in heaven! She LOVES the water come to find out. If we'd have let her she would have swam all day long. We ate out, watched movies, and after we put the kids to bed, Bry and I would sit out on the patio and just talk. It was simple. But it was probably one of the best trips we've been on. There was something special about the four of us just being together.

Me at the entrace to Las Palmas. It was so pretty!

Eleyna admiring the flowers on one of our walks around the property.

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.