Dream Shard Blog: The Scintillating Adventures of Our Household

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Thu
15
Nov '07

Good News Thursday

A few good things.

First off, Wes is nine weeks old. Growing up before our eyes. Yesterday he was weighed by a visiting nurse and he weighed in at 7 lbs 2 oz. Wow!

Second, this morning was his Big Cardiology Appointment. About half of all kids with Down syndrome have heart problems, so we had reason to be worried, but also reason to be hopeful, since so far his health has seemed fairly sturdy. Our cardiologist, Dr. Mart, comes down from Primary Children’s in SLC to the Parkway Health Center in Orem once in a while, which was nice so I didn’t have to drive so far. The nurse checked his oxygen saturation levels, and they were excellent. This is great since he was on oxygen for a few weeks, and I’ve seen DS kids months older than Wes who still require constant oxygen. Then she did an EKG (electrocardiogram), where she stuck stickers all over his chest and back with metal spiggets on each one and then clamped many wires to the metal, like you do when jumpstarting a car. Wes did fine until she was done and had to remove the stickers. I guess it didn’t feel too good to him, because he started to cry. The nurse, I think, was in love with him because she scooped him up and gushed, “I’m sorry, I’m sorry” over and over until he quieted down. Usually the nurses will say something like, “You can pick him up if you want,” instead of doing it themselves. But this nurse kept saying how adorable and cute and sweet Wes was, and she had a hard time putting him down again.

After that was the big echocardiogram. It’s like an ultrasound for the heart. Wes was stripped down to his diaper and had goop smeared on his chest and I got to see pictures of his heart on the monitor from the top, bottom, and sides. It would have been more interesting if I knew what any of it meant. That took about 25 minutes, wherein Wes was pretty patient.

Finally Dr. Mart came in and gave us the results. Dr. Mart is pretty amazing; he and his wife have sixteen (sixteen!) kids, most of them adopted and all of the adopted ones have special needs. He told me he has a son with Down syndrome. When I asked how old his son was, he said, “Oh, like six or seven.” I guess with sixteen kids the ages tend to blend together.

Anyway, the verdict: Wesley’s heart looks really good, but he does have something called Small Secundum ASD. It means that one of the valves that should have closed up at birth didn’t, but the opening is a small one, and Dr. Mart said that often such openings will close by themselves in a couple of years. So we’ll take Wes back when he’s two or three to have another echocardiogram and see how his heart looks then.

Considering that a lot of little kids with DS have to endure major heart surgery before they’re even toddlers, we feel really lucky that Wes’s heart is so healthy.

Third bit of goodness: After the doctor appointment I was starved, so I visited John at work and he took me out to Shoots restaurant in Provo. Yum! It was my first time there and John’s second. We both got lunch specials, which was about $8 apiece and came with soup, egg roll, fried won tons, and entree. I normally don’t like egg rolls, but it must be because I’ve never had one that was so fresh as the ones they make there. It was so good! The egg drop soup was a little bland, though. However, my entree was delicious. I got honey walnut chicken, which was served on a bed of lettuce in some creamy dressing. Oh, it was good. John and I split a strawberry boba drink, which was yummy. To top it all off we split a dessert: shaved ice topped with cream, sweetended condensed milk, and fresh fruit (pineapple, strawberries, and bananas). It was almost better than ice cream. The creamy ice melted on your tongue. It was so good.

Okay, so now that you know that I ate ten times my weight in calories today, here are a few pictures of the kid.

Here he is konked out in his crib tonight. Sometimes when I peek at him while he’s sleeping I think he looks just like a porcelain doll. Sometimes people who see him will tell me that he looks so perfect, he doesn’t look real. I love how he holds his hands up a little while he’s sleeping.

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I had to take a shot of him crying the other day.
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And one more:
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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

The men in my house are sleepy heads

John’s not a morning person. Waking him up when he’s not ready to wake up is pretty futile.

Our son appears to be the same way.

Here are some pictures I took of Wes the other day while holding him, trying to get him to wake up.

He’s asleep.
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He’s thinking about cracking those eyes open.
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His eyes open!
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…and shut again.
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I nudge him and he gets angry.
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…and then contemplative.
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Are those eyes really opening?
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He’s angry again.
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Is he resigning himself to waking up?
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Not without a fight.
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It appears I’m losing the battle.
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He won.