Tomorrow we will be wearing our crazy socks (and shoes) for World Down Syndrome Day to represent the joy that people who are a little bit different bring into our lives. This will be the third World Down Syndrome Day we've celebrated since having our son Benny, and I have to say that in his three short years he's already busted a lot of the stereotypes I had about trisomy 21. One of the concerns that every parent has for their child is whether or not they will be able to have a career when they grow up. In America the unemployment statistics for people with developmental disabilities is unfortunately very high. But Benny has already had his first paid job! When he was just two years old Benny landed a modeling gig with Target. He already has his very own bank account. We had heard that it's rare for people with Down syndrome to be able to drive. This was something my husband was especially concerned about. Watching Benny drive his power wheels around we are pretty certain that he will be able to drive a real car around someday if he wants to. Another worry has been whether or not Benny will be able to make and keep friends. So far he has proven to be very outgoing, and every day when I pick him up from school his friends say bye to him and give him hugs. He has also made several friends outside of school who really enjoy his company. Although Benny has limited speech, he is very expressive and imaginative in his play. In most ways he is a pretty typical boy - he and his friends love to play with trains and cars and action figures. He also loves to play with toy guns, and will pretend to shoot his friends, and very dramatically fall down after getting shot himself. Unfortunately this is starting to get him in trouble at school, so I'm working on redirecting this behavior, although I secretly love that he is such a little stuntman! Recently we decided that it was time to talk to one of his friends about the fact that Benny has down syndrome. Because his friend is only four we kept the information very simple, and just explained that Benny has special needs because he has Down syndrome, which means he was born with an extra chromosome. That this little difference means that sometimes it takes him longer to figure out how to do things, and sometimes it's harder for him to understand or communicate. His friend listened to our explanation, said "ok", and moved on to play with his train tracks. The two have been playing together for over a year now and I had been nervous about how this conversation might go. I feel very lucky that this little boy has such a big, sweet heart that he completely accepted this new information about his friend, and has continued to ask to have playdates with Benny even after finding out about his Down syndrome. This is the kind of response that I was hoping for, and that I wish everyone would have when they meet someone with Down syndrome. "It's just a little difference, no big deal, let's hang out!"
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Not every doctor sees Down syndrome as a treatable condition. Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome". Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson. Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore. Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson. All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high. I am so grateful that we discovered this fairly early on. My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is. Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue. After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast. The result is this truly amazing interview that I am so very proud of. I hope that you will listen to and share this podcast with anyone you think might benefit. Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks. When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it. Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice. One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes. We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit. Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this: Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin. She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him. She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks. An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable. While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort. We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line. After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could. The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night. I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle. Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat: Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was! We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable. Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny. With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen. Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month. I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture. Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories. This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen. But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck. I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you! |
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April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
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