Dream Shard Blog: The Scintillating Adventures of Our Household

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Mon
9
Mar '15

Wesley

A while ago I took my three kids to BYU campus. I was taking their pictures on some steps inside the Wilkinson Center when a couple of BYU students went by and exited through the doors by us. My eyes were drawn to them because they were tall, handsome, athletic young men who were moving with purpose. Their t-shirts said “Y Serve.” I guess they were on their way to a service project. In a moment of short-sightedness that I’m sometimes prone to, my mom-heart hurt a little because when I saw those tall good-looking boys, I looked at my son Wes and realized he will never be exactly like them. They were on their way to give service; my Wes will often be the one receiving service.

This past weekend I spent an hour watching Wes play basketball with two buddies who cheered for him, gave him pats on the back, told him “good job!” and stayed with him when he ran from the court. Wes was happy because he got help to do something he loves. I was happy because I got one hour of needed respite. And the buddies were happy because they were helping. The buddies come from a residential school that helps troubled teens with emotional and behavioral issues. I talked to one of the staff members after Saturday’s game who said, “I NEVER see them like this. They are like different boys here, helping these kids.”

For a moment at BYU I felt sad that my son would have to be the one receiving lots of help. I think it’s because I felt it was better to be the one giving service than receiving. But now I see that it’s really a weighted balance: The joy of giving can equal the joy of receiving. And the weight of importance is equal on both sides. Who got more from the basketball game, Wes or the buddies? It’s hard to say…

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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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Sat
1
Nov '14

Our Saturday

We started our Saturday with flu shots for everyone. Boy, it was fun.

Actually, I anticipated that the kids (the two older ones, anyway) wouldn’t like the idea of it, so we didn’t tell them about it until we were almost there. Carissa immediately starts to protest and Wes starts saying, “Daniel Tiger,” meaning that he’s remembering the episode of Daniel Tiger’s Neighborhood on PBS Kids where Daniel goes to the doctor and gets a shot. (Which, by the way, in no way makes it easier for him to go get a shot, even though it’s “just like Daniel!”)

We were supposed to start with Carissa since she’s the one with an egg allergy and should be monitored for 30 minutes after to ensure she doesn’t react. But the nurses pulled the shots for John and me first, so we went first. Then Elizabeth because she didn’t know any better. She had a sucker in each hand as the shot went in, so even though she cried a minute or two, she quickly remembered her suckers and was OK again.

Wes was harder because he knew and didn’t want the shot. John tried reasoning with him for a while but it didn’t help. He pulled out his tablet and got Wes on Angry Birds. Wes was involved, cried briefly at the shot (super briefly) and then was engrossed in Angry Birds again.

Last of all was our allergic one, Carissa, who during this time was hiding in the lobby. She was effectively working herself “into a state.” We pulled her into the exam room and tried reasoning with her. No good. Her arms and chest and cheeks were flushed because she was so upset. The nurse said it was a good thing we noticed that now so we’d know it wasn’t part of an allergic reaction later. When it came to it we just had to get the shot done, and so the nurse did it.

It did not go over well.

If she was unreasonable before the shot, she was inconsolably unreasonable now. I can’t even remember all the things she was yelling and crying about, but we couldn’t even get her out of the exam room when it was over. She refused to leave. So we left her for a few minutes, but she wouldn’t come out, not even when the nurse tried to bribe her.

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Finally John pulled her outside and she did not calm down until we were at BYU, which was our next stop. On Saturdays Wes gets to hang out with different BYU athletic teams, and today it was the gymnastics team–one of Wes’s favorites!

We were actually on time, for once, but the door was locked. The team was trying to get someone over to open it for us. So we waited.

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And waited.

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And waited more.

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Until it opened! Wes loves all things tumbling and gymnastics. He dove right in, literally, by jumping into the foam pit and then climbing this thing.

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I’d be scared of heights, but not Wes.

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He did it again and again and again and again.

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Wes also liked the trampoline.

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And the rings.

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Carissa found a buddy right away (Sin To) and got to work building castles out of the foam pieces and playing in the foam pit. She loved it.

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While I have no pictures of Elizabeth to show, she was equally happy running around everywhere and doing everything an almost-two-year-old can do.

Once we got home I made lunch all around, put Elizabeth down for a nap, and did dishes. The plan was to get groceries but to wait until Elizabeth woke up so I could take her with me and leave the two older (and easier kids to babysit) home with John. But she took a long three-hour nap! By the time she woke up there were other things we needed to do and I didn’t get out for the shopping until after 4:30pm–dinnertime. Dinnertime is the worst time to go grocery shopping, especially when you take kids. I ended up taking Wes and Elizabeth and I admit to buying all sorts of things that weren’t on the list because they kept tossing things in and I was losing the willpower to resist. They were hungry, I was hungry (and I had brought snacks for them, but still), and we were at Wal-mart, which is the black hole of all grocery stores. You could go in and never come out, it’s so big and full of people and lines. By the time we checked out it was 6:30 and we had to wait in line 20 minutes just to pay for our stuff.

Thankfully Wes, who can sometimes be so frustrating to take places, was a great helper tonight. He loves to help, more than almost anything. He helped me put all the food on the conveyor belt, he helped me put the filled bags into our cart, and he even helped me swipe the credit card (his favorite part).

OK, we ended up with cupcakes and Oreos and drumstick ice cream treats we definitely had NOT planned on buying. But after all his hard work, he earned that cupcake with frosting.

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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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Sun
25
May '14

May Recap (Part I)

So we’re going backwards here.

I decided I wanted to get a grill. I generally dislike cooking but really like the taste of all things grilled. I wanted to learn.

John and I saw a Weber brand grill (which is a good brand) at Costco for over $100 less than regular retail price. We returned a few days later to buy it, after researching, and it was gone. All sold out here and at every Costco in the area.

I felt disappointed, but we decided to get a different, more expensive grill that was at least in stock. However, just as John was going to get the propane for it in the store we passed a special vendor that was selling Traeger brand grills. The company is based in Oregon and also has an office right here in the small town where we live. The price was right, about the same as the Weber one we had looked at. It’s not propane but fueled by wood pellets. Essentially it creates a little fire at the bottom of the grill and the heat is circulated by a fan. The wood pellets come in different flavors like hickory and mesquite and apple, and you can do additional things like smoke meat and make jerky or even bake pies and cookies. We went for it.

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Today I became One Who Grills and made us some cheeseburgers, all by myself. I have to say, they tasted great! Nice and smoky and yummy. And it wasn’t hard.

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I even tried a batch of cookies. The first batch I burned but the second came out just right.

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My parents recently moved into the area. We’ve seen them a lot in the last week and a half, and my kids are in heaven. I think they think Grandma and Grandpa’s house IS heaven. Where else do you get tractor rides on the riding lawn mower?

(Elizabeth didn’t love it.)
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(Wes liked driving.)
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(Carissa loved everything.)
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(Just look at her huge grin.)
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Tonight at G&G’s I lost Wes and then found him and his cousin in the back of Grandpa’s truck.

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The cousins played “house” together (which Carissa happily played with her cousins, making pretend dinners, while Wes tried to find ways to climb out of the truck). Savannah helped the four of them pose for a formal picture or two.

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…and then a couple silly ones.

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Meanwhile Elizabeth sat in the wagon, just hoping someone would come along and pull her in it. She sat there a long time.

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(I think it is funny to watch these cousins playing “house” together. Wes isn’t really into playing pretend but he tried. I think the funniest parts to me are watching Carissa make noodles and hearing Ashleigh say, “Ok, I’ll be the mom” like it’s the worst job ever.)

Carissa finished her first year of preschool. This is the same preschool Wes attended. It’s taught by a special ed teacher and includes a mix of kids with special needs and “typical” kids like Carissa who can lend examples. She did so great at school. She started when she was just barely three years old, and she was a little shy and timid. She was too afraid to use the big potty at school for months (it flushes loud), and the teachers had to coax her with m&m rewards. She not only got over that, but she also lost her shyness. She loves preschool. At the start of the year she would come home and not say much (I figured because she was tired), but by the end of the year I would pick her up and she’d launch into telling me what they learned about or what she ate for snack. Her writing has improved a million-fold. She learned to write her name all by herself, then she reverted to writing it backwards all the time, but with some more practice she writes it perfectly now. I remember one time near the middle of the year she told me how she can write her name, but she’s not so good at S’s because they all come out like Z’s. But she’s got it now. She’s also become quite the artist, and her teachers would use her drawings as examples to other kids of how to draw people.

The end-of-year party was a cookies and milk gathering for parents to come and recognize the kids. Wes and Carissa loved the cookies!
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When the class gathered for a photo, every time I looked into my camera to snap a picture there was Wes, front and center. I kept pulling him away and he kept sneaking back in while I picked up my camera. It’s amazing I don’t have a picture of Carissa’s class with him in it.

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Meanwhile our Wesley graduated from Transitional Kindergarten. This is a special ed classroom where all the kids have an IEP (a specific contracted plan with the teachers) and some special need. Wes has done really well at school this year. He went from barely being able to write the letters in his name (they were very wobbly and never in the right order and usually all over the page instead of in a straight line) to writing his name really well, in a straight line. He usually plugs a “6” on the end because he’s “Wesley 6 my birthday.” He’s learned to sight read a bunch of words and was maybe the best kid in his class at reading sight words. His teachers told me that he is sweet, happy, and sociable, saying “hi!” to everyone. Sometimes I’d get bad reports about him wrestling or pushing, but overall his teachers had very positive things to say. Next year Wes enters mainstream school and regular kindergarten.

John and I went to his kindergarten program, and my parents came too. Wes looked so handsome and did a GREAT job singing (which he loves), dancing (ditto), and reciting “Humpty Dumpty.”
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Hot weather calls for swimsuits and the wading pool.

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Carissa likes to paint her nails. One day we both did our toes the same shade of green.
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…and she did her own nails in sparkly purple (her other favorite color besides pink).

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A typical scene at our house during summertime. All are holding a form of frozen treat in their hands.

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Also a common sight in the summer: eating lunch on the front porch.

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Carissa on her way to preschool.
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One day Carissa’s class learned about stuff from the movie “Frozen” and she came home withe makings of a snowman like Olaf. I helped her put it together. And then faster than snow can melt, it was gone. Yummy.

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Carissa drew this picture of me and wrote my name “Mom” all by herself. I think it’s the first word I’ve seen her write independently besides her name. Since then I’ve also seen her write “go.”
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I don’t know what Elizabeth is doing. Probably following the example of her older brother and sister.
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Didn’t I say that heaven is at Grandma and Grandpa’s? This was the first time we took the kids to visit after my parents moved here.

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