Dream Shard Blog: The Scintillating Adventures of Our Household

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Mon
2
Feb '15

The Dreaded ENT

It was a rough day for Wes at kindergarten today. He was late to school because we spent all morning at the ENT doctor’s office, which was a 45-minute drive each way and of course the doctor was running an hour late. He didn’t want to go to school but I talked him into it and left. When I picked him up from school, one of his helpers told me that when she arrived he was in the bathroom crying and asking for Mom. She convinced him to sit and do some work anyway. When it was his turn to write a sentence, the assigned sentence was “Cats don’t fly.” He didn’t want to write it. His teacher said he could write “Wes loves Mom” instead. He wouldn’t do it. Instead, he wrote–all by himself–“Wesley want mom”. His teacher told him that was great and to finish it with a period, and he put an exclamation mark. Rough day but I’m really proud of him too! And I got the best hug from him when school was done.

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So, the ENT. Last July Wes had a sleep study, then a follow-up appointment in August with an ENT (Ear Nose Throat) doctor to see if it was recommended that Wesley get his tonsils and adenoids out. It’s a super common procedure for people with Down syndrome. The reason is that sleep apnea is super common, and the #1 way they attempt to help sleep apnea is by removing the tonsils and adenoids. Among typical kids only 1-3% have sleep apnea. With DS kids it’s more like 83% (although I’ve seen a range of 25-85%; it’s a lot more, anyway).

Wes’s sleep study was actually really good, considering he has Down syndrome. He ranks in with mild-moderate sleep apnea (mild usually, but peaking to moderate during his REM cycles). It means he has some obstruction and his body works harder to transport oxygen during sleep, and it’s not always effective like it should be. His oxygen levels during the sleep study stayed pretty good (usually above 80%), but his body was clearly working harder for it.

So in August we met with Dr. Park. He said Wes’s tonsils are huge (8/10) but he didn’t think the risks associated with surgery were worth it for Wes. He recommended no surgery.

Good news, right? Well, yes, but it didn’t sit well with me. I hadn’t heard of any doctor ever telling a child with DS he was better off without surgery. I talked to a bunch of different moms, ran the sleep study by my neighbor who works in a sleep lab, and decided to get a second opinion. Hence today’s visit with Dr. Muntz.

Other moms had already told me that Dr. Park (from August) is more “wait and see” and Dr. Muntz (from today) is more pro-surgery. So I was prepared for him to recommend surgery, and he did. He said that any typical kid with the sleep apnea score that Wes has (like a 4 or something) would automatically qualify him for an adenotonsillectomy. And with Down syndrome, it was no question at all.

The surgery’s success stats are: 33% are cured of sleep apnea, 33% get better, and for 33% it does nothing at all. However, the surgery is MORE likely to benefit someone with more mild obstructive sleep apnea, which is Wes.

I understand that the surgery may help reduce his apnea. It may improve the longevity of his heart and his lungs and other vital organs as he gets older, because his apnea will probably get worse.

But as the doctor described to me what the procedure entails, and I pictured my little Wes unconscious on a table with a breathing tube down his throat and an IV in his arm and something sharp cutting away at his throat I just wanted to cry. I hate to put him through that. I hate it, everything about it.

We talked about risks. The biggest risk post-surgery is bleeding, although he said only one of his patients has actually died from it in his 36 years. (Comforting?) Dr. Park said we lived far away enough that the time it would take us to get back to the hospital (an hour away) could be a scary concern. Dr. Muntz said, don’t worry about it.

So we have to decide what to do about Wes. We are willing to take some time and have another sleep study to see how he’s doing, and then go from there. I know lots of kids do this surgery. But I hate for it to be my kid.

Some fun things Wes got to do:

Push the elevator button to the 3rd floor.
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Play x-box (Lego Batman) for an HOUR while we waited for our turn.
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Build a house (and knock it down when we left).
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See the Oquirrh temple.
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Get a celebration smoothie when we were done.
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Another cool thing is I met another mom in the waiting room who has a cute cute cute 17-month old with Down syndrome. Every time I see a one-year-old child with Down syndrome it takes me back to when Wes was that age. They are just babies for the longest time, and it is SO wonderful! He was sitting up by himself and so cute. She has a website she created to help point out that there is nothing “down” about Down syndrome! http://nothingdownaboutit.com/ Check it out!

Sat
27
Dec '14

Basketball Boy

Our state’s Down syndrome foundation had some free tickets to a pro-basketball game, and we scored 2 tickets, so John took Wes tonight.

John said as he took Wes inside they stopped by the concessions and offered Wes a giant pretzel, but Wes said, “No, I full.”

Then they passed the ice cream vender, but Wes said, “No, I full.”

(At which point in the story I stopped John and said, “Was Wes sick?” He never turns down ice cream.)

But it turns out he just was really excited to get inside.

John said that Wes LOVED the game. Every time anyone scored a basket, Wes would jump up out of his seat and cheer. It didn’t matter which team. John kept telling him to say, “Go blue! Go blue!”, which he would, but sometimes when the other team would score he’d throw his hands in the air and shout, “Go white!”

Just as it was time to go (they left in the 3rd quarter, which was later than planned), as Wes got his jacket on, he looked up at his dad and said, “Ice cream.” He was ready. But it was also bedtime so it was a no-go.

However, he came home sleepy and so happy. Yay for basketball.

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Thu
20
Nov '14

Wesley’s 7th Birthday

I never posted memories from Wesley’s birthday in September, so…

He went to school in the afternoon, and we had a friends-birthday party afterward. Wes picked an Angry Birds theme.

I always make Wes a birthday badge to wear to school.

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His grandma and grandpa donated the beautiful balloons.

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The kids colored.

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We played a game in the backyard where they tossed a ball at a wall with piggies, like unto Angry Birds.

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My friend offered to make this terrific Angry Bird cake. It was chocolate and Wes liked it.

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Grandma and Grandpa dropped by afterward with presents!
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We are glad to have Wes every day. He constantly reminds us what life is all about by forcing us to slow down, have fun, and love.

Mon
27
Oct '14

Today, the Dentist

We started our morning at the dentist. We are grateful to have dental insurance, which we never used to have, and I intend to use it.

Today was maybe the fourth time my kids (the two older ones, anyway) have been to the dentist. The first time was when Wes was about four, and Carissa one or two. It was a total train wreck. Wes had meltdown after meltdown. (Carissa did fine.) After that I stayed away from the dentist and eventually chose a different one to go to. I think I’ve also found my voice as a parent since then, recognizing that for Wesley’s needs I really need to talk to the people who work with him and help them understand and prepare for his challenges curing the visit.

I’m learning that Wes needs consistent exposure to difficult experiences to help him adjust. I have an appointment set for him next month, and every month thereafter, to get him into the dentist and help him get used to being there. As soon as we exit the lobby (fun area) and enter the main part of the dental office (scary area) Wes gets nervous. It’s written all over him. I know it’s because of his previous medical experiences of many kinds (drawing blood, getting x-rays, sleep study, having tonsils looked at, etc. etc. etc.) where because of his unwillingness to do the things he’s asked to do (hold still, open mouth, do this or that) he has been held and forced against his will to do it. Sometimes as a parent you think that’s the only way. The job gets done.

But it has its effects.

So Wes is super nervous and non-compliant at any medical office. Today he did really good overall, but that’s because we didn’t make him sit in the x-ray chair (DEATH! HORRIBLE DEATH!) or even in the chair that leans back where the dentist examines him. He also didn’t get his teeth cleaned. There was a moment when I tried to force him to sit in the lean-back chair for his exam but it was clearly a bad idea and we adjusted. Dr. Ryan just sat next to him and really nicely showed him how he was going to count his teeth. And then Wes complied. And that’s why we’re going back next month too.

Carissa and Elizabeth, on the other hand, did everything they were asked to do. Even Elizabeth! I was shocked that she sat still and obeyed the x-ray tech and didn’t cry or fuss or anything. And the same thing when Dr. Ryan looked at her teeth. No problem at all. And she’s not even 2 yet!

Carissa said she didn’t like the x-rays, which I can understand since she has to hold something in her mouth and it’s kind of big and awkward, but she didn’t cry. The kids all got rewards from the treasure machines at the end and I took them home, relieved.

Until next month.

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Mon
16
Dec '13

Winter is Here

With the holidays fast approaching we’ve been enjoying the season.

I tried taking photos of the kids for a potential Christmas card but they all basically turned out like this. No Christmas cards for us.

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We bought a pile of hot chocolate for a church activity. Wes and Carissa liked using it to build a giant tower.

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Wes is really improving at his art and writing skills. As his mom, I am Super Impressed and Proud. And so I share:

He did this picture AND the word all by himself. ALL BY HIMSELF. (I just told him how to spell “spider.”) Did I mention I’m Super Impressed and Proud?

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Elizabeth is 13 months going on 13 years.

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This afternoon the sun was shining and it was above freezing, so when Carissa asked to play outside in the snow I couldn’t object. For the first time, both kids got to make snow angels. Carissa did one and was happy (“Just like Kipper!” she said, referring to the dog on one of her favorite shows from Netflix), but Wes made about six. He really liked it!

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Carissa was my helper decorating our goodies for neighbor gifts. She was in her element and did a good job. She helped decorate, Wes helped eat them.

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Fri
22
Nov '13

Fun Night

Tonight our neighborhood grocery store was having a holiday open house, with lots of tables with free samples and activities like face painting and banana car racing.

I was going to take Carissa, because she loves riding in the grocery cart that looks like a car. But she fell asleep at 6 pm while watching “Star Wars,” so we plopped her in bed and I went with Wesley instead. He was a perfect companion, and we had so much fun.

He pulled his green trolley cart behind him as we walked. He figured out real quick that if you stopped at a table, they would give him something. So we roamed around the store trying sample after sample after sample. Some Wes would eat right away, and others he collected for later in his green cart. We got cereal bar treats, mango lemonade, chocolate kisses, apples and caramel dip, an orange slice, mini hot dogs, a mini Snickers bar, peppermint ice cream, egg nog, rolls with honey butter, birthday cake, doughnut holes, bread slices, Oreo cookies…and the list could go on. They seemed to have run out of balloons, but a young man in a suit passed by us and asked if Wes would like his balloon, so then Wes had his own. And he clutched it as a prized possession the rest of the evening.

There was a race station where kids could decorate a banana in Mr. Potato Head parts, stick it on wheels, and then send it down a sloped track for a race. Wes won! He earned a bottle of True Moo chocolate milk, delivered by the sweet Miss Utah.

This was a fun night. Wes clearly had a fun time, and since he got to stay up past his bedtime he came home and crashed right away without even brushing his teeth. Could life be any better?

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