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…
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.
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:
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!
In December we went with some extended family to Tucanos. It is such a nice place to visit during the holidays because of the amazing lights outside.
We tried to get family pictures but they didn’t really turn out; these are the best two, and they don’t include everyone.
We enjoyed walking through the Christmas lights after dinner, and we discovered a free sleigh ride in a wagon pulled buy two horses with bells on. We stood in line about 15 minutes, and then it was our turn. Just as we were walking up to board Elizabeth suddenly threw up. So I stayed with her on the sidelines while John took the other two kids for a ride. They loved it. Elizabeth was fine, by the way.
We took the kids to the annual United Angels Foundation Christmas Party, which is for families who have kids with special needs. We ate dinner and then played games and stood in line to see Santa. I like to get pictures of the kids with Santa to help document Christmas year-by-year, but this year wasn’t a great year for pictures.
John and I attended a BIP meeting for Wes at his school. “BIP” means “Behavior Intervention Program” (I think). It’s part of his IEP program, which helps with academic goals. This covers behavior-specific goals. We met with six or seven other people who work with Wes and school and talked about ways to help him do better. Carissa was with us, since she had a slight fever and we didn’t want to leave her with a babysitter (like the other two kids). It was a long meeting, almost 2 hours, so to keep her busy I gave her my camera. And voila, we have pictures of our meeting. Mostly of Carissa.
One morning I thought I’d make a quick coffee cake, and that it wouldn’t take much time at all, but then all three kids wanted to help and it wasn’t so quick anymore. I like it when they help me in the kitchen, though.
Grocery shopping with Wes. I made him put the Utes hat back.
Playing with umbrellas.
I noticed that Carissa had taken our family picture (from 4 years ago) and updated it herself.
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.