Dream Shard Blog: The Scintillating Adventures of Our Household

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Fri
9
Nov '07

Laundry Help? … and 8 week update

I was sorting through old photos of Wes and came across these. I took them on September 30th, when Wes was 2 1/2 weeks old, and had only been home from the hospital for a handful of days. I was trying to figure out how to do laundry with a newborn in tow. This is how I managed.

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Looking back at these photos, I seriously can’t believe how big the kid’s gotten in the six weeks since these photos were snapped. He totally fills out that little bear sleeper outfit now.

Yesterday was his 8-week checkup and he weighed in at (cue drum roll) 6 lbs 15.5 oz (with diaper on). He also got some shots, which he was very brave about and only cried for a minute or two afterwards.

Our doctor was investigating to see if Wes would qualify for RSV shots. Since he was born early, has Down syndrome, and was on oxygen a while they thought he’d qualify. They called me on Tuesday and said he had qualified, then found out on Wednesday that it had fallen through. I’m bummed because we can’t afford the shots without insurance help (there’s one shot per month during RSV season, and they’re about $1500 a pop), and the doctor warned us that if Wes got RSV it was more likely to turn bad (e.g. into pneumonia or the like) than a non-DS kid because of his smaller respitory passages. He said without the shot we should be extra careful about bringing Wes in contact with germy people. Specifically, he suggested we isolate him like an eskimo in Alaska until springtime.

That’s not exactly convenient, is it. We’ll still take him places, but now I can’t help but feel extra paranoid about anyone who approaches our kid unless I’m sure he or she is entirely germ-free and not breathing too closely to Wes. I’m trying to not be concerned, but then I think about taking care of a baby who can’t breathe for mucus, or is back in the hospital, and I’m tempted to try the eskimo life.

Tue
6
Nov '07

BYU Fan #1!

Someone kindly gave our son a BYU onesie, which we were really excited about (afterall, the kid’s gotta know his blue roots). But even though it’s “newborn” size, it’s still pretty big on him. Even so, we dressed him in it for the BYU vs. CSU game last Saturday.

Getting ready for the game:
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Us watching the game:
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How Wes “watches” football:
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Mon
29
Oct '07

Wes Nostalgia

I realized that I never posted photos of Wes when he was a little guy. That is, littler than he is now.

Here’s a head shot from the day he was born, September 12th:
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Here’s a shot of him in his Halloween costume at six weeks old. Notice how much more filled out his face is now.
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Here’s a full-body shot of him in the NICU when he was one day old:
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Here he is at five weeks old. Incidentally, I took this photo because it was one of the last preemie diapers he wore. He’s actually getting too big for them now.
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Here’s Wes two weeks old:
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And here he is in the same outfit, but almost seven weeks old. He fills out his clothes much better.

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And a few other shots from his stay in the hospital.

A yawn:

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This was the first preemie onesie he wore. Isn’t it huge?!

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And me holding him, displaying him in all his glory.

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Thu
25
Oct '07

The Park

Today Wes and I went to the park by my house to meet up with my sister Tara and her eleven-month-old daughter Savannah. Here are some pictures as proof.

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Tue
23
Oct '07

Bath Time!

I have a ton of pictures to get up here eventually. But today I’ll share with you pictures from Wesley’s bath this morning. Babies are darn cute naked.

Here’s Wes getting soaped up in our little pink tub. He’s pretty good natured about being soaked in nice warm water.

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Now we’re getting ready to wash his hair.

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I just get his hair wet under the faucet and then soap him up with the sponge.

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And now he’s all done!

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Wed
17
Oct '07

More about Wes and his Down syndrome

Today was Wesley’s 5-week checkup. He clocked in at 5 lbs 10 oz! Even more amazing, tonight I put him in a preemie gown (the kind that’s like a sack) and it was a little tight around his feet! He’s growing.

Last week John and I took Wes to Primary Children’s Hospital in Salt Lake City to meet with a genetic counselor. We discussed Wes’s condition of Down syndrome and went over what we can expect with him, medically, mentally, and physically.

Here are some things I learned about our baby and Down syndrome.

1. He was the product of Trisomy 21, which means there’s an extra 21st chromosome in every cell that slightly changes the development of the body and brain. The extra genetic material is a totally random thing originating with the sperm or the egg. About 95% of people with Down syndrome have Trisomy 21.

2. Any normal couple has a 1 in 800 chance of having a kid with DS.

3. Since we already have a kid with DS, our chances automatically jump to 1 in 100 for future children.

4. About 5,000 kids with DS are born every year. Eighty percent are born to moms under the age of 35.

5. People with DS are at a higher risk for certain medical conditions. The American Academy of Pediatrics outlines the probability as follows. There’s an increased risk of:

    congenital heart defects (50%); leukemia (<1%); hearing loss (75%); otitis media (50-70%); Hirschsprung disease (<1%); gastrointestinal atresias (12%); eye disease (60%), including cataracts (15%) and severe refractive errors (50%); acquired hip dislocation (6%); obstructive sleep apnea (50%-75%); and thyroid disease (15%).

That’s a scary list, isn’t it? I don’t even know what some of those conditions are. Hopefully we won’t ever need to find out. So far his heart looks good (we’ll take him to a cardiologist next month to make sure), his hearing checks out normally, and he doesn’t have cataracts. We’ve been instructed to take him to see a pediatric ophthalmologist and an ear/nose/throat specialist before he’s a year old to check up on some of those other conditions.

6. Mental impairment can range from mild (IQ: 50-70) to moderate (IQ: 35-50) and only occasionally to severe (IQ: 20-35).

7. Down syndrome kids look more like their families than they do one another.

8. Our son, like every child, will have a full range of emotions and attitudes, creativity and imagination, interests and talents that will shape his life and add color to our everyday experiences.

9. People with Down syndrome can grow up to live independent lives with varying degrees of support and accommodations needed. They can hold jobs and sometimes live on their own. I’ve talked with people locally whose DS kids have gone on to go through the temple, serve missions, and even be ordinance workers in the temple.

10. The most important thing I’ve learned is that despite the statistics, Wes could totally wow us, and probably he will. Every child will have some problems during his life. With Down syndrome, it’s a little more intimidating up front because the possibilities of what could go wrong with him are spelled out pretty frankly. But one thing I’m learning is that, like with any kid and any situation, you have to expect the best, and we’ll try to.