Church Nursery

As a mom, it's hard to leave your child for the first time. You constantly worry about them. Will he cry? Will he have a dirty diaper? Will he get hungry? Will they know how to comfort him? Lots of things to think about. With Weston, I was nervous to leave him for the first time, but I wasn't as nervous as I was with Colton. Weston is like any other kid. If you've had a kid before, you can handle Weston. He's typical. But Colton, Colton's special. But to be honest, he's really no different than a typical child at this point. He eats, he sleeps, he poops. He lets anybody hold him and if you talk to him, you'll see that smile. That BIG smile that lights up his whole face and melts your heart. When you see that smile, you can't help but love him. This is the one I'm talking about...





So...there really is no problem with leaving him. The problem is....ME! I'm very protective of my Colton. He's my buddy...my bestie. We've been together every single day of his life. Now, I've left him for several hours with family before...but never someone other than family. This morning, I left Colton for the very first time at our Church Nursery. I walked into the room and told them that it was his very first time. There was an older man with glasses that was so welcoming. I had Colton in his car seat carrier and the man immediately said, "Well, let's get him out of there so I can hold him." I told the man that Colton had DS. I wanted him to know that Colton is 6 months old but he can't sit up yet because of his low tone. You see, Colton is a big boy so sometimes people think he's older than he really is...which also means they think he can do more than he actually can. I told him that he doesn't have any medical issues. He asked me if Colton would need a bottle and I told him no. I made sure Colton was fed before we went. Feeding Colton is different...not hard, just different. The thickness usually throws people off, so I prefer to feed him. As I passed Colton over to the man, he whimpered just a little...that's the first time I've ever seen him a little unsure of leaving me. It made me a little sad, but the man took him and immediately went to a rocking chair. Colton did not cry. I left and went to church. During church, I checked my phone no less than 15 times. I just wanted to make sure they didn't text me for any reason. Colton made it through the entire service, which lasted 1 1/2 hours. When I went to pick him up, he was sound asleep in a swing. The man was sitting right beside him holding another baby. He said that Colton was great! Colton was happy and the other kids kept trying to bring him toys. He said he put him in the swing after a little while and Colton fell asleep. He'd been asleep about 20 minutes. As I moved him to his car seat, he woke up and gave me a BIG smile. As I was leaving, the man said, "Please bring him back. He was great!" It was very sweet of him to say that. I think he could sense my nervousness as I dropped him off. Colton's first time in the Nursery was awesome! Deep down, I knew it would be because he's a good baby, but I still worried because kids can be unpredictable. I know each time it will only get easier. And sometime, someone other than family will have to feed him a bottle. And...it will be ok. Just like today was ok. Baby steps...

Celebrating 6 months!

It's hard to believe that it's been 6 months since Colton joined our family! WOW! We are in a VERY different place than we were 6 months ago. 6 months ago, there were tears. LOTS of tears. Tears of sadness, disappointment, fear, shock, anger... Now, the only tears I can muster up are tears of JOY! What used to be a broken heart, is now a swollen heart. My heart contains so much love and joy for this little boy, that it might just explode at any moment. When I go to get him out of his crib every morning, those big blue eyes look at me, his entire face smiles, and those arms and legs get to kicking and waving with excitement. He brings our family SO much happiness. He came in with a huge surprise, and he continues to surprise us every single day. Today, we had our 6 month checkup. Our Pediatrician said he passed "with flying colors." What a fabulous surprise! His health and happiness are such a blessing to us. I teared up on the way home from the doctor because I'm just so proud of him. I'll share a few details about his appointment.

1. He's HUGE! It's not the norm for a DS baby to be on the typical scale...so let's just share his stats on the typical scale.



Look at my big boy! We are glad to see that his height and weight are proportional after all of that rice cereal! Woohoo!

2. She put in a referral for a repeat Swallow Study to see how he's doing. Right now, I have to thicken his bottles to Stiff Honey, which is really thick! We are hoping that maybe the muscle tone in his throat has improved and we can thicken to either Nectar or Honey (which isn't as thick as Stiff Honey). The Children's Hospital should call sometime in the next 6 weeks with our appointment.

3. We can start to spoon feed some baby food! She told me to start trying some once a day. If he coughs, gags, or starts sounding really congested, we may need to stop until we do the swallow study. We are hoping he'll be able to swallow the food without thickening it, but we will just have to wait and see. I went to the store and bought him some Stage 1 vegetables. I think we'll try some this evening so that daddy can participate in the fun!

4. She said Colton was in the mid-range of his Ages and Stages Questionnaire. She's not worried about anything. I did have more "Not Yets" and "Sometimes" than at his 4 month checkup, but that's ok. Just like any baby, Colton moves at his own pace. We work with him constantly, so we know he will eventually get there with his fine motor, gross motor, and communication skills.

5. She checked his ears, eyes, hips, mouth, etc... She said everything looked good! He's obviously getting enough food, so she said to just continue to do what we're doing. Colton currently eats 5 bottles a day (22 oz). The rice cereal fills him up, so he's not eating as many ounces as a normal baby his age would. She said that's not a problem. As long as he gets between 20-32 oz a day, we're good.

6. Colton LOVED the paper he got to lay on while he waited for the doctor. It made lots of exciting noises. He was wiggling all over the place and wrinkling it up. He even was ripping pieces off and trying to eat them. Very exciting!



We also did a little prop sitting while we waited because I knew he'd like grabbing the paper. He made it about 4 seconds before he started falling toward the wall. Check out those big muscles!



7. Colton has started medicine for Reflux. He doesn't like to prop sit because it puts pressure on his tummy. Every time we practice, he spits up. So...we are starting some Zantac to see if that will help his tummy and keep him from spitting up. His Reflux really isn't bad, but his PT is hoping this might help so he won't arch to get out of his sitting position EVERY SINGLE TIME!

8. Colton had to get blood drawn to check his Thyroid. It's common for children with DS to have Thyroid issues. He was checked at birth and it was fine. We will find out the results tomorrow afternoon. If everything is fine, we will check it again at 1 year and then annually.

9. Colton got 2 shots! He didn't cry one bit during his blood draw, but cried VERY hard after his shots. He wasn't a happy camper! Mama got lots of extra cuddles.




Colton, you are healthy, happy, and HUGE! We are so thankful for you. We are celebrating and praising God for a good report.

Our Current Situation

Summertime is sometimes tricky. Weston is out of school. We usually have several different vacations...weekends at the lake, a trip to Orlando to visit family, a beach trip. Bedtimes are later than normal because the sun stays up a little longer. It's hard to get into a routine. Just when I feel like we're getting settled, we leave again for another trip. Don't get me wrong, it's fun, but it can also be a little bit more tiring and stressful (packing for 2 kids is NO JOKE....clothes, bottles, formula/rice cereal/Thick-It, toys, pack-n-plays, bibs...the list goes on...and on...).

But, one thing I can count on each week is that Colton will have 2 Physical Therapy sessions. He now goes twice a week for 60 minutes each session. I take him to those sessions and I watch. I watch and learn. I also help. If Colton is fussy, I sing him songs. I offer him toys. I pick him up and hug him if he needs a Mama fix. Some sessions, he does AWESOME! Other sessions, he cries a lot. The other day he was crying and I picked him up and said, "Colton, Mama is so sorry! Most babies don't have to work this hard. It's just not fair!" It made me tear up a little bit. I hate that he has to work hard just to do things that other babies do naturally. It stinks, but it is what it is. We have no choice in the matter, so onward we go! All I can do is to keep taking him, helping him, and encouraging him.

Babies with DS are usually very low tone and very flexible. I've seen pictures of babies/kids with DS that can contort their body in the strangest ways. The funny thing about Colton, though, is that he's not very flexible. His PT also told me that he has more tone than most. We're not sure why, but that's the way God made him. She said it's a good thing. His hips are really tight. So this week, she wants me to work hard to stretch them. He cries when we're doing it, but he needs to loosen up a little bit.





We are also working on sitting. We have to strengthen his core. I put him in his Bumbo seat a lot in order to help.



Colton has a hard time with his arms. It's really hard to strengthen his arms. It's not like he can just lift weights. We do a lot of weight bearing through his arms while he does tummy time.



It would be nice if he would do push-ups, but that's no easy task for a 5 month old. Colton can't control his arms like a 5 month old should. Our PT told us that we need to try to get him to reach out and grab toys off of a surface, while he's sitting up. Colton will look at a toy in front of him, start sticking out his tongue because he just wants to taste it, but he can't quite figure out how to make his arms get the toy. If I put the toy closer to his hand, he can grab it, but for some reason, reaching forward is hard for him. If he's lying on his back, he can reach up and grab a toy, but if he's trying to support his head and body and control his arms, it's really hard for him. We made him a little desk to practice while he's sitting.



We are also working on prop sitting, which requires him to use his arms to support his body. He will prop for a few seconds and arch back to get out of it. We think that when he bends over, he's putting pressure on his tummy, which doesn't feel good since he has a little Reflux. He spits up more when we're prop sitting. So...I think we might mention that to the Pediatrician at his next visit to see if we can't get him some medicine to help. He's not a fan of prop sitting now, so I tried it on the exercise ball last night and he liked it. Whatever it takes!



So...we're trying to learn to sit, grab toys, and strengthen our core and arms. He's doing really well. He's such a sweet and happy baby. I told his PT that he really only cries when he's tired, hungry, or working out with her! She laughed.



We love you baby Colton! We are proud of you! Keep working hard, buddy. We'll get there.

A New Woman

I was talking to my mom the other day and she was saying, "Look how God has used Colton's birth to change you, Carrie." I started thinking about the past 5 months and it's absolutely true. I am a New Woman!

I grew up in a Christian family with my mom, dad, and 2 sisters. I had a very charming childhood. I was always surrounded by lots of aunts, uncles, cousins, and grandparents. We have always valued family time. All of my family came for birthdays, holidays, and special events like graduation or softball tournaments. We laugh together, play games together, and enjoy each other's company. I thought everybody's family was like that. I thought everyone grew up knowing Christ. I went to church and prayed, but never really had a faith-building experience...until I decided to become a mother.

You see, life was always pretty easy for me. I had a loving family, a nice home, lots of friends. I went to a good school, made good grades, graduated college, married the love of my life. Life fell into place perfectly...just like I had planned. Hunter and I were going to be married for 2 years and then we were going to have 2 kids, 2 years apart. I just assumed it would all go according to plan...MY plan. That's when the quote, "If you want to make God laugh, tell Him your plans..." really began to mean something to me. To get my Weston, it took me over 2 years. During those 2 years, I did a lot of crying and a lot of praying. I spent many hours on a table doing Acupuncture. I finally decided to stop buying pregnancy tests...because I was just wasting money. The only thing I could do, was turn to God. I had to TRUST in HIS plans. We had been married 5 1/2 years when Weston was born. It was longer than I had expected, but Hunter and I had some great times together as a family of 2...and for that, I am thankful. So life was good with our little Weston. We felt so blessed to have this little miracle. We decided it was time for baby #2 to join the family. Remember, I wanted them 2 years apart. Unfortunately, it took longer than expected...AGAIN! Here I was, back to square one, trying to make life go according to MY plan. I guess I'm just a control freak...I like to know what's going to happen and plan. I like to be prepared. I prayed and prayed for Weston to have a healthy sibling. After losing 2 babies, I finally got pregnant with Mr. Colton. I prayed every day for the first 12 weeks that this baby would make it...and he did. My babies would be 3.5 years apart...which was farther than I had wanted, but I was just thankful I would have another baby...a healthy baby. And then God gave me the BIGGEST faith-building experience of my life. A healthy baby...with Down Syndrome. And that's when I truly understood that I AM NOT IN CONTROL!!!! My plans went out the window. I was not prepared for this...but I just had to trust in Him.

Throughout our 5 month journey with Colton, my life has changed. I've learned to expect the unexpected. I've looked back at my life and realized that God has been preparing me for this for a long time. My dad randomly got transferred from Ohio to Arkansas when I was in high school. At the time, it was devastating, but now...it's my home. It's where I met my husband, it's where I've had my babies, it's where there's an incredible Medicaid program for children with disabilities. Arkansas, really? Who knew? My kids being 3.5 years apart has been a blessing. Weston is old enough to go to school and he's potty trained. I have time to focus on Colton and his therapies. I was a teacher for 9 years...I have a child that will have difficulties learning...and now I can focus on teaching him. I know about IEP's and different methods for teaching math concepts. Family support? Man, do I ever have that. God knew exactly what I needed. He has been preparing me for this journey for a long time.

So, why am I a new woman? Well, I'm the kind of person who is shy until you get to know me. I don't like to talk to random strangers or call places to ask questions, etc.... I always made my sisters and mom do stuff like that for me. I don't like to be out of my comfort zone. Since I've had Colton, I've been to lunch with strangers because we both had children with disabilities. I've taken my family to a DS balloon release where I didn't know anybody. I've called lots of doctor's offices, hospitals, and therapy places to ask questions about services, bills, etc.... I've joined a weekly Bible Study at my church. I've proudly told strangers that my child has DS, without tears. I've started this blog and am sharing my story with lots of people. Why? Because I want to educate people about DS...it's not the doom and gloom that most people think it is. I want to update people on our lives. I want to tell people that God is in control and that you have to trust in HIS plan. I want women to know that YOU are not alone if you are struggling with infertility or have a child with special needs. YOU will be okay. God has used Weston and Colton to strengthen my faith. He gave me two blessings...in HIS time. It's been quite the journey, so far. Like I said, my life was always pretty easy. But, you never know how tough you are until you've been pushed to the limit. God has pushed me, and I've bounced back. I found a quote the other day that I really love..."Challenges are what make life interesting; overcoming them is what makes life meaningful, " by Joshua J. Marine. God gave me a challenge, but I will overcome that challenge.

Whatever you may be going through at the present moment, know that you are not alone. You can get through it. And when you're struggling...PRAY, PRAY, PRAY!

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6

Switching Things Up

Well...we are officially switching things up. Colton just started his Physical Therapy at Access, not Easter Seals. Why the change? Well, here's the story...

At the end of April, our Physical Therapist was still doing home visits every 3 weeks for therapy. She came to our house and was working with him, and she told me that she was ready to start having him come to the facility 1x per week for 60 minutes. I was really excited for him to start going to therapy weekly because I knew it would take a little pressure off of me...I do my best, but a PT knows a lot more than I do. She also told me that she would be leaving Easter Seals to begin working at Access in June. Access recruited her because she's really good with babies and they wanted to add more babies to their school. She was told she could take all of her outpatients with her when she moved, if the families were willing to make the switch. She mentioned it to me and I was excited. I'd heard really great things about Access. Don't get me wrong, I really like Easter Seals, but it was the only place we'd toured because it was in a good location and we had some family friends that worked there. But, when you find a PT who loves on your baby and is making great progress with them, you just have to follow them! So...Hunter and I decided to go tour Access in order to see if we liked it. Let me just say...WOW! It was fabulous! When we left the tour, Hunter looked at me and said, "This is where Colton is going to go to preschool." I totally agreed. Every room had their curriculum posted outside with themes and book suggestions, etc.... The classrooms were so inviting. The focus of the school is Literacy and all of the preschool classes are 50% typical children and 50% children with developmental delays. The therapy gym was really big. There was a large in-ground trampoline and a foam pit with a balance beam going across it. There's a stage with lots of different things on it. They had a rock climbing wall and several types of swings. It was just really cool. If I were a kid, I'd be so excited to go in there to "play." Everyone was really friendly. They have a large garden that the older kids use to learn to plant and grow things. They even have adult classes for 18-35 year olds to help with interviewing skills and getting jobs, etc.... The goal would be for Colton to go to preschool there and then transition into Kindergarten at a regular public school; however, if he needs more assistance in the classroom, he can attend Access for school.

So far, we've had 3 PT appointments at Access. It's a very busy place and Colton loves to watch the other kids while he works out. He's making lots of progress, too. Colton has learned to roll from his back to his tummy. Every time I put him down on his back, he ends up on his tummy. I'm proud of my big boy! We are working on sitting up, too, and strengthening his arms so that he can learn to get into a crawling position.





We know several people who work at Access, and it's fun to run into them each week. It's definitely going to be a new home for us, and we are really excited about our journey there. We will do outpatient therapy until August 2017. Once I decide to send Colton to preschool there, he has to go full time, year round in order for TEFRA to pay for his school/therapy. They do year round because they don't want kids losing skills over the summer, especially when they work so hard to get those skills. I'm not ready to give my baby up for that long right now, so I'm going to wait another year until he's a little bit older. I like taking him to therapy so that I can watch and learn...it makes working with him at home easier if I can see what she does with him. So far, it's been a great experience. We are thrilled that we found a wonderful place for Colton!

The First Time It Happened...

Yesterday, we dedicated our sweet baby Colton at church. We got him all dressed up and arrived early in order to save our seats near the front. While we waited for church to start, we listened to the worship team practice. My in-laws arrived and were playing with the kids because they hadn't seen them in a few days. There was a lady and her daughter sitting behind us, but I didn't know them. They must have been watching Colton for a little while. The mom came over and said hello to Colton and commented on how cute he was. Then she went back to her seat. Church began and after the first song, the Pastor said a few words and then asked everyone to turn around and greet the people sitting near you. Hunter and I turned around and spoke to this lady and her daughter. She was super friendly and said hi to Weston and asked him if he was a good big brother. Then she talked to Colton and told us that she had some friends who had an 8 year old with Downs and he was quite a character. She said they really enjoyed being around him. Hunter and I turned back around as the music began and starting singing. All of a sudden, my eyes filled with tears. I kept trying to make them stop, but I just couldn't. It was the very first time anybody had noticed and mentioned that Colton had DS without me telling them...and man, it stung. I'm sure people may have noticed before, but this was the first time somebody actually said something about it. Hunter also must have been thinking about it because he leaned over to me and said, "Did you tell her he had Downs or did she just know?" I said, "She just knew."

I knew this day would come...I've tried to prepare myself for it...but it still hurt. After a few songs, I pushed through the tears and it was time to dedicate Colton. We went up on stage and were the first family to go.





The Pastor read 9 statements that we commit to as parents of these sweet babies. He inserted Colton's name into every one of them. The first two were just what I needed to hear...

1. We acknowledge that Colton is a gift from God.

2. We recognize that God uniquely formed Colton and our responsibility is to raise him to honor God in all of life.



The verse we chose for Colton came from Psalm 139:14,
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."

We absolutely adore our little chunky monkey. He brings us such joy. It takes about 2 seconds of talking to him to get him to smile at you like the picture below. We wouldn't trade him for the world. We know that he was "wonderfully made." We also know he does have DS and that people are going to know it, too. It will be written all over his face. Pretty soon, we'll get used to people looking at him and commenting on it....but this was a first for us...and it was hard. But I will say, our Colton man is pretty dang cute...and that smile can brighten anybody's day.

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.