Dream Shard Blog: The Scintillating Adventures of Our Household

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Mar '15

Dinnertime Candids

During dinner tonight Elizabeth had a pouty moment. She has the best glowering, sullen looks where she tucks her chin under and sticks out her lower lip. I missed the lower lip but caught the rest. I can’t help but laugh when she glowers.




So then Carissa wanted me to take a picture of her, too.


And we couldn’t leave Wes out.





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.


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.

Play x-box (Lego Batman) for an HOUR while we waited for our turn.

Build a house (and knock it down when we left).

See the Oquirrh temple.

Get a celebration smoothie when we were done.

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!

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.


His grandma and grandpa donated the beautiful balloons.




The kids colored.



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




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






Grandma and Grandpa dropped by afterward with presents!

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.


Carissa’s 4th Birthday

I realized I never put up memories from our Carissa’s fourth birthday party in August. We had a party with friends (and grandma and grandpa). Carissa picked the theme: Hello Kitty. For the Big Day, she wore her Hello Kitty (pajama) shirt and put a pink bow in her hair like Hello Kitty.





We started with coloring Hello Kitty pages and decorating Hello Kitty sugar cookies. The kids liked this part. Wes liked eating the frosting.

We did “Pin the Bow on Hello Kitty.” John did the terrific job of drawing and coloring Hello Kitty on poster board. I would have just free-handed it, but he made a grid with pencil first so it was all proportional and it looked really good! Carissa still tells me today that she can remember how she could see when it was her turn to pin the bow on. But that’s because she was obviously cheating and peeking.





Next Carissa opened presents. The kids all want to help. She got some amazing gifts that are very reflective of HER: lots of arts and crafts type of things, nail polish, a Hello Kitty umbrella, etc.

A Carissa's presents sm

A Carissa's presents b sm

A Carissa smile

Then we moved to the backyard where we had decorated a canopy and had the birthday cake. When I asked Carissa what kind of cake she wanted, of course it was Hello Kitty. I showed her lots of pictures on the Internet of Hello Kitty cakes and she clearly showed me that she wanted a cake that looks just like Hello Kitty. And then I–the non-cake decorator–had to figure out how to make it. I think it turned out really good.

A 8.14.14 Carissa's Hello Kitty Cake by me sm

We ran out of time for the pinata, which we saved for Wesley’s birthday. The kids had fun and Carissa had a beautiful celebration of her wonderfulness. We are so blessed to have Carissa in our family. She is full of creativity, full of life, full of opinions, full of surprises, and we are glad she’s here to stay.

A Mom bday cake sm

A Bringing the cakev

A Carissa cute

A lighting candles

A Carissa cake

A the party outside better

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.





Oct '14

This weekend stuff

Realized I didn’t know where Elizabeth went, and found her behind a closed door. Sneaky girl sneaking around with my black waterproof mascara.



Wes is giving another talk in Primary (church) tomorrow. The topic is how the Proclamation to the World on the Family helps our family. Wes is a good reader and can read most of the words himself. Very proud of him!




I took Elizabeth our for errands today. She lasted through 2.5 stores before she didn’t last anymore.


Yesterday I took the kids to the mall (to visit the Halloween store for costume ideas) while our carpets were being cleaned (the sound scares Wes). We got sidetracked into the amazing toy store and came out with this new digger for Wes. He plays happily with it in our sandbox, which is starting to get too small for his 7-year-old body.


Carissa showed me this picture she drew of our family in her Hello Kitty scrapbook. I like the buttons on John’s shirt, the color of my coat, how tiny Elizabeth is, and the thought bubble above Carissa’s head that shows she’s dreaming of Hello Kitty.


Wes and Elizabeth both like blowing bubbles a lot.



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