Dream Shard Blog: The Scintillating Adventures of Our Household

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Tue
8
Jul '08

Running again…

I decided that I am going to run in the 5k that’s this Saturday in Orem to help raise funds for the Best Buddies program in Utah County. I feel like it’s one small thing I can do to contribute to Wesley’s future. I’ll probably run this one with Wes in the stroller, though, so he can be part of it.

Call me a softie, but I couldn’t resist making this shirt for me to wear especially for the race on Saturday.

Fri
30
Nov '07

Eleven weeks and counting

Wes is eleven weeks old already. Today he had a visit from a physical therapist who evaluated him and give me some ideas of how to help him further strengthen his muscles. She said he’s remarkably strong for a baby with Down syndrome. He’s active, kicking and shaking his arms, and visually interested, looking around at everything. He seems motivated to move and progress without much encouragement from me. Like, I’ll put a toy in front of him when he’s on his tummy to give him something to push himself up and look at, but he doesn’t need it. He’ll push himself up on his own for the sake of pushing himself up. The therapist propped Wesley up in a sitting position to see what his head would do, and he was able to hold it up a little. She said that many DS babies in that position will let their chin fall to the chest and stay there.

So Wes is doing really well. I’m going to continue working with him to: 1) hold his head up when he’s on his tummy, 2) hold his head up when he’s on his back, and 3) roll over from front to back and back to front. The rolling over part is fun. I just set him on his side and push up his top leg and let him wiggle and he’ll turn himself over.

I have some photos I meant to post a while ago.

Here’s our superhero baby in his Halloween costume. He was six weeks old. And, yes, that outfit was super humungous on him.
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This photo was taken by my friend on the same day she took photos of him in his costume. By this time he was getting tired. But the picture makes me smile every time I look at it.
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Wes is also six weeks old here.
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He’s ten weeks old in this picture, but he’s still pretty tiny. I’m holding his feet in my hand. I think he weighs about 7 1/2 pounds.
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Tue
20
Nov '07

T-Minus Two Days

Today I hit the grocery store, thinking that shopping for Thanksgiving two days before the actual Big Day would mean I was beating the rush.

No freaking way.

All of Utah County appeared to have had the same idea as me. Macey’s grocery store was p-a-c-k-e-d. But what do you do? Turn around and go home? Tomorrow could be better, but would probably be worse, so I might as well get it over with today.

People were emerging from the front doors with shopping carts laden with bags and bags of food. Not that this is all that uncommon of a sight at a grocery store, especially in an area where families with six or seven children is the norm. But today everyone’s bags were full of all the same things. I could see it as I passed: turkey, ham, marshmallows, potatoes, Cool Whip, canned pumpkin, Stove Top, and ice cream (because what would Thanksgiving be in Utah without ice cream?).

At least I wasn’t getting a turkey, so I could avoid the throng of women huddled around the turkey freezer case. I was in charge of buying a ham. And since I wasn’t planning to buy the traditional cook-it-yourself spiral ham that feeds sixteen, I had the tiny section of the meat case that sold pre-cooked half hams about the size of your fist all to myself, so I could dwadle all I wanted without being elbowed out by serious shoppers with agendas.

I think it took me over an hour to get myself through the store and safely out the front doors again. Phew. Thankfully Wes was asleep the whole time. He was still asleep when I got home. Here’s proof:

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Thu
15
Nov '07

Tummy Time Video

I try to give Wes tummy time every day. Sometimes, when he’s not tired, he does really well and can keep his head up for 10-20 seconds at a time. Which, for such a little guy, seems pretty good.

Here are a couple videos of him working on it today. This is mostly for his grandma. (You know we love you, Mom.)

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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.

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