Interesting Things I've Learned

Over the past 4 months, I've learned a lot of new things about children and adults with DS. Colton may experience all, some, or none of these things. No two kids are alike, so we will just have to wait to see how having one extra chromosome will affect Mr. Colton.

1. Ear Canals and Nasal Passages

They have more narrow nasal passages and ear canals. It can be hard for a Pediatrician to see the eardrum, which can lead to undetected ear infections. Usually, a child with DS will have to go to an ENT in order to have their ears checked and/or tubes put in. I asked our Pediatrician at our last visit if she could see Colton's eardrums...and she could! So...I guess that's a good thing. He hasn't had an ear infection, yet, but that could be something we have trouble with in the future. Chronic ear infections can lead to hearing loss, so it's important to keep an eye on. The narrow nasal passages can make a cold more miserable because they don't drain as well. Upper respiratory infections are also common. These are things I was unaware of a few months ago.

2. Thyroid Issues

People with DS can have thyroid issues that can lead to weight gain. Colton will have to have his thyroid checked annually. If you haven't already noticed, Colton is quite the chunk. I asked our Pediatrician about it and she told me that as long as his height and weight are proportional, he's fine. Luckily, he's in the 50's and 60's for both, so we are good right now. He also has the advantage of having a tall father, which might make him a little taller than the average DS male....unless of course he gets my height (hehe). In the future, we will probably have to monitor the food he eats so that he doesn't gain too much weight.

3. Teeth

So...they don't always get their teeth in the same order as a typical child. I've heard stories where fangs came before the front teeth. Their teeth can come in a random order. I've read that they can get their first teeth at 12-14 months, but it may be as late as 24 months. He may not get all 20 teeth until he's 4 or 5, where a typical baby usually has all 20 by 2 or 3. They usually have smaller than average teeth and/or missing teeth. Sometimes they have larger tongues or an average sized tongue but a small upper jaw that makes their tongue too large for their mouth. Tongue thrusting can be an issue, so we do mouth exercises to try to keep Colton's tongue moving right and left and up and down in his mouth. We don't want him to thrust his tongue because it can cause speech problems as well as feeding problems.

4. Speech

Low tone just messes everything up. The muscles in the mouth, face, and throat are low tone, so this can cause feeding issues and speech issues. A lot of people with DS have speech impediments because of this. I do exercises in Colton's mouth to stimulate and strengthen the muscles in his face/mouth/tongue. People with DS can understand much more than they can express. It may take them longer to learn to speak, so a lot of children learn signs to keep from getting frustrated. They want to tell their parents things, but they just can't figure out how to get it out of their mouths. That's why speech therapy is so important at an early age. Colton hasn't qualified yet, but the Speech Therapist gave me some exercises to do daily. I'll share those in a later post.

5. Vision

Apparently, they can be born with cataracts. Luckily, Colton doesn't have cataracts. Eye disease is reported in over half of patients with DS. They could be less severe like tear duct abnormalities or more severe like vision threatening diagnoses like cataracts. Most people with DS will have to wear glasses as some point in their life.

6. Sleep Apnea

Low tone can cause sleep apnea because the throat muscles relax as we sleep. If they relax too much, they can block the airways. Some people with DS have to have sleep studies done because of this.

7. Fertility

I read that 50% of women with DS are fertile. If these women have babies, 35-50% of those babies will be born with DS or other developmental disabilities. There is limited information about Men's Fertility. There have been 3 confirmed cases with a DS father. We might see an increase in the future because men with DS have so many more opportunities to be successful. More and more are getting married. Also, life expectancy has increased significantly in the past 30 years. We do know that men with DS do have a lower overall fertility rate than men their age that are typical.


So...there you have it! A few things I've learned over the past 4 months. I know that I'll continue to learn even more information in the future. It will be an interesting journey with Colton, so hopefully by reading this blog, you can continue to join us.

4 Month Checkup

Y'all! We just had the best 4 month checkup. My eyes filled with tears and my heart soared. Our Pediatrician said Colton is doing "fantastic!" She laughed because he is meeting all of his milestones and growth just like any other 4 month old. She was very, very happy with how he's doing. Look at my big boy's stats:



I filled out the 4 month old questionnaire and the options for each question are "Yes, Sometimes, Not Yet." I didn't put "Not Yet" on any of them. I was shocked! Now, Colton hasn't mastered every single thing on the list; however, he is attempting to do all of those things each day. We still need work on our arm control and grip, but we are making progress. Colton's therapists are on point with what they're having us do. It just makes me feel so good to know that he's not falling behind. We are keeping up....so far. We will keep on, keeping on.

My little man was loving the white paper he was on because it makes lots of noise when he wiggles. He wiggled all over that thing. It was a wrinkled mess after we left. I remember Weston liked that, too! The only thing he didn't like...shots! Poor baby turned bright red and did the silent cry thing until he finally screamed it out! Whew! Luckily, mom was ready with a bottle to calm him down.



"Our God is greater, our God is stronger, God You are higher than any other, our God is Healer, awesome in power, our God, our God..." Singing His praises today!

"He doesn't look like he has Down Syndrome"

If I had a dollar for every time I've heard, "He doesn't look like he has Down Syndrome," I'd be rich! Hey, I'm with ya! There are times I look at Colton, and I can't see it. He looks like any other typical baby. When we go out in public, people don't seem to notice. There have been a few times when I've had to tell people that he has it and you should see the look on their face! They're just as surprised as we were in the hospital! They also don't really know what to say. That's ok...it's surprising news...and it's not an easy pill to swallow.

However, there are times when I can totally tell he has it. It depends on the face he's making or the angle I'm looking at him. I can mostly see it in his eyes or when he's sticking out his tongue. I can also see it in the extra skin he has on the back of his neck, like a puppy. Here are a few pics where I can see it more...







The truth is...he has Down Syndrome. Eventually, everyone will be able to tell that he has it, because he does have it. You always wonder what your kids are going to look like as they get older, but with Colton, I think about it more often. I just don't want him to be self-conscious. I also don't want Weston to have to hear kids ask, "Why does your brother look like that?" But...it's gonna happen. I think it has more to do with people being ignorant than malicious. I'm just trying to prepare myself for it. Being able to see that he has DS, has its pros and cons. Pro: People will be more accepting of his behavior in public because they know he has it. Con: People are probably going to treat him differently and stare. But hey, we'll be fine. We have thick skin. To me, he'll always be precious. In my eyes, he's going to be the most handsome boy with DS there ever was. So right now, he may not look it....but as he gets older, I think it will be more obvious. But that's ok. Only time will tell...

Physical Therapy

At 4 weeks old, Colton qualified for Physical Therapy. We decided to do Home-Programming since he was so little. We didn't want to take him to the facility because we didn't want him to get sick. Our PT got a prescription from our Pediatrician to come to our house every 3 weeks to work with Colton and to teach me exercises to do with him at home. At his 4 week evaluation, she gave me some exercises to do until our first official visit at 7 weeks. Goal #1: Head Control. We were told to do lots of tummy time. We were to roll up a small hand towel and place it under his armpits/chest, to help make it a little easier.



She also suggested that we try to position him in different ways if we set him down. Since he's low tone, gravity causes him to mold to any surface he's on. We don't want him flat as a pancake, so she wanted him to lay on his sides if at all possible. We used towels to help position him.



We have to work on his tummy muscles and pull his feet up toward his chest, allowing his hands to try to grab onto his feet. Typical babies usually have no trouble with this, but for Colton, it's hard!



It took us awhile to gain head control...almost 4 months of working. We found that Colton would use every muscle in his body to try and hold up his head, but when you held his body still and just isolated those neck muscles, he'd flop that head around. We had to work really hard just on those neck muscles. She suggested that when I carried him around the house, I'd hold him in ways that would work his neck. I'd face him out so that one of my arms was holding his chest and the other was under his legs. I'd lean him forward a little so that he'd have to pick his head up to look around. I'd also put him up high on my shoulder with both of his arms over my shoulder, allowing his head to bob and work. I have to be intentional when I carry Colton so that he's always working!



We use the exercise ball a lot in order to help build tone. Any kind of bouncing is good for his core. He seems to like it, too!







Colton has been doing an excellent job with therapy. Sometimes he gets really mad when she forces him to work hard, but that's ok! We have to push him to be the best that he can be! Here are a few more shots of some of his exercises...



Our therapist made this contraption over her Spring Break. Colton needs to lay on his side, but he always wiggles until he's on his back again. We strap him to this to keep him on his side. We want him reaching out for toys because gravity doesn't make it so hard for him if he's sideways.









People always ask me if I have a set schedule for doing therapy with him. The answer is no. I do therapy whenever I get a chance. I have to plan it around meals, bottles, taking big brother to school and activities, appointments, etc... We just do it when we have some free time. Sometimes it's in the morning while brother is at school, other times it's at night while we watch tv. Somedays we do better than others. The PT told me, "Carrie, sometimes you just have to be mom. You can't always be his therapist." I'm so glad she said that. We try to do a little each day. He is just a baby and needs some time to just do baby things!

Colton was re-evaluated for PT just last week. She told me that he was going to make it hard on her because he almost didn't qualify. Trust me, we want him to qualify! He is doing really well, but he's definitely not where a typical 4 month old should be. She told me that his age equivalence was about 2 months. She said that's good for Colton....so...we are happy to hear that he's doing well. Colton now has a prescription for therapy 1x a week at the facility. It's fun to take him and watch him. It's a one hour session. At the end of the session, she gives us "homework" for the week. We have mastered head control, so Goal #2 is Trunk Control. This week we are focusing on weight bearing through his legs and arms, and we are working on stabilizing the lower half of his body so that he can work on moving his arms forward to grab and swat at toys. He is a tough little guy and he's working hard. We are proud of our Colton!!