A Different Kind of Love

There is something so special about Colton. It's a different kind of love. A love that just makes your heart melt and explode and smile all at the same time. It's hard to explain, but it's true. Multiple family members have told me that they feel the same way. I guess it's because we all know that Colton is special. He has special needs and he requires extra attention...and he has to do a lot of things that seem unfair because of that extra chromosome. But 99% of the time he does them with a smile on his face. He is a rockstar. And I would venture to guess that he just might be the family favorite. And I hope nobody in the family takes offense to that...because Colton is just in a league of his own.



These two boys are Colton's cousins, Tyler and Tanner. Their love for Colton is something fierce. They always want to Facetime to see Colton and they LOVE watching his videos. They always ask me, "Aunt Carrie, when Colton comes to visit, can I help put on his pajamas and change his diaper?" They want to hold him and kiss him and play games with him.



My sister has talked to them about Colton having Down Syndrome. Tyler is 6 and is old enough to understand. A few weeks ago, my sister sent me a text about a conversation she had with Tyler. Apparently, they have some friends who are pregnant with a third baby and my sister was talking to Tyler about it. She said, "Tyler, Mommy will not be having a 3rd child. Did you want one?" He said, "Well, no." Then he went into deep thought. He hugged his Mommy and said, "Mommy, the ONLY way I would ever want you to have a baby is if you could promise me that the baby would be JUST perfect like Colton and have Down Syndrome, too. Otherwise, I don't want one."

Y'all, that brings tears to my eyes! How sweet! Even a 6 year old gets it! Even a 6 year old knows how special Colton is.



What is really cool is that Tyler's teacher has a grown daughter with Down Syndrome. How crazy is that?



If you have children, I encourage you to talk to them about children with Special Needs, when you feel the time is right. Teach them about Colton. I want kids to love and appreciate Colton for who he is. They will find that he's more alike than different. He's happy and fun and just likes to play. It just takes him a little longer to learn and progress. And if you have any questions or concerns about how to approach it, please feel free to ask! Your children will benefit greatly from having friends with Special Needs. We are SO blessed to have Colton in our family.



We absolutely adore Colton. What a special gift he is to our family. We are all better people because of him. He has taught us to slow down and focus on what is truly important in life. We are so lucky that we get to experience a different kind of love.

"Nothing is closer to Heaven on Earth than having a Special Needs child in your home." www.leftwithasmile.com

"You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- Real Love."

-Spectrum Superstars

Swallow Study #3 & ENT Visit (21 months)

I took Colton for his 3rd Swallow Study at the end of September to see if he was making any improvements with his swallowing. He's been drinking liquids thickened to Stiff Honey since he was 2 months old. His Speech Therapist joined me for the appointment so that she could see how he did and ask questions I might not think to ask. I was so glad she was there with me!



We were hopeful that Colton would show improvement, but unfortunately, that was not the case. Colton was able to eat food without aspirating, however, he did aspirate on Honey Thick liquids. He even aspirated on Stiff Honey liquids. He doesn't aspirate every swallow, but he does have some penetrations toward the airway. They think that he might aspirate every 6 swallows or so. Bummer! With aspirations, Colton is at risk of getting pneumonia or a serious lung infection. Since it has been almost 20 months since he started Stiff Honey and he's still showing no signs of improvement, they wanted to refer us to an ENT to have his throat looked at. They think that something other than low muscle tone is causing his swallowing issues. I was a little defeated but I'm learning to take things in stride so only a few tears were shed. Our ENT appointment was scheduled 3 weeks later, so we didn't have to wait long to find answers.

I was warned ahead of time from several friends that the ENT would want to do a scope of Colton's throat. They told me that I needed to prepare myself because it wasn't a pleasant procedure. Luckily, they told me it wouldn't last long. A nurse sat in the chair with a sheet on her lap to wrap around Colton. I warned her that he is a STRONG little dude when he wants to be.



They sprayed his nostrils with a numbing solution and then stuck the scope in his nose to take a video of his throat. I was able to watch the video during the procedure, which was cool, but I had to listen to my boy scream bloody murder. It was SO sad. It only lasted a few minutes and then they were done. It took a little while to calm him back down after the procedure...and the poor kid did have some blood in his mouth.



The ENT thinks that Colton is having trouble swallowing due to coordination issues with breathing and swallowing. Colton's adenoids and tonsils are extremely large and the back of his throat is extremely crowded. He's just having trouble managing everything. Her recommendation is to remove Colton's tonsils and adenoids and trim any tissue near the larynx that may need to be trimmed. She said she can't guarantee that by removing tonsils and adenoids his swallowing issues will disappear completely, but it should help. With continued therapy, he will eventually be able to drink regular liquids. She is concerned that if we don't remove them soon, he could get a lung infection or pneumonia since he's not technically "safe" drinking Stiff Honey thickened liquids. So she wanted to get him on the schedule ASAP.

But we have a problem...Colton is NOT allowed to have any surgery because of his heart. Colton has fenestrated ASD's and his Cardiologist told me back in the spring that if an air bubble were to get in the line of the IV during a surgery, it would kill him. We have a referral in to meet with his Cardiologist. I'm waiting to hear when that appointment will be. She will make the decision on whether or not Colton is allowed to have surgery. In my opinion, I don't think he's going to be allowed to have surgery and I don't know that she's going to want to do his heart surgery now (as opposed to when he's 3 or 4 years old) when he hasn't been very sick. He's been lucky so far! I am super serious about thickening his liquids and I always make them as thick as I can. I even thicken his Tylenol before I give it to him. I do my very best to keep my boy healthy.

So now...we wait. Hopefully, we will meet with our Cardiologist soon and she will make the decision. We would appreciate your continued prayers for our Colton. Pray that the holes in his heart close. Pray that he will eventually be able to get his tonsils and adenoids removed so that he will have an easier time drinking and breathing. Pray for me as I try to be strong and hold it all together. This journey isn't an easy one, but I'm thankful to have a wonderful support system to walk with me every step of the way.

"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

Tone Up

Anybody out there think it would be nice to gain a little bit more muscle tone? Maybe tone up your thighs or your glutes or your abs or your biceps? I definitely think about it. But then I go to the gym and do one workout and I'm sore for days and I have to really motivate myself to go back and do it again. And to gain muscle tone, you kinda have to be consistent. You can't do it once a month and expect results. It takes time, patience, dedication, and consistency to gain muscle tone. But if you put in the hard work, you will reap the benefits.

That brings me to my little Colton. My sweet, low-toned baby Colton. And he's not so little anymore. He's 20 months old and approximately 24 pounds. We need to tone that baby up in order for him to walk! Dude has absolutely no glutes! We need to get that baby some booty muscles. He also could use some leg muscles...and some abs. How do we build that muscle tone? Squats...lots and lots of squats. Sit to stand. Sit to stand. Sit to stand. Weight bear through his legs by practicing standing. Weight bear through his arms by practicing crawling. Bending over at the waist to pick a toy up off of the floor and return to sitting position. Requiring him to support his own body when we carry him from place to place. Colton has mastered the lean. If I lean on Mama, I don't have to support my own weight. He does not help me carry him around one bit. His legs don't even grip around my waist. He just hangs there and lets me do all of the work. Colton is always looking for someone or something else to support his weight (walker, couch, highchair, etc...). But if we want him to walk...we have to make him work. It's sad to make your baby "workout," especially when it's hard for them and usually brings them to tears. But I have to put my feelings aside and do what is best for my child. He will benefit greatly from building muscle tone. And he will thank me later. So...I'm going to push him.

Mama, Daddy, and his PT had a little meeting the other day and we shared all of Colton's tricks. He's one tricky dude. He doesn't want to do the work so he finds ways for other people to do the work for him...why? Because it's HARD! That's the same reason I don't keep torturing myself at the gym...because it's HARD! So, in order for Colton to gain muscle tone, we have to put in the time, be patient, be dedicated, and be consistent. Colton can't just get 3 hours of PT a week and gain the tone he needs in order to walk. I mean, he could, but it would probably take a LONG time. So, we came up with a few things we could do to help Colton gain tone. And it's not necessarily a "workout" session everyday. It's just about being intentional. For example, I can carry Colton a different way. Instead of him hanging on my hip, I can hold him facing out and require him to use more core strength to support his body weight. I could sit him on a backless bench to watch Mickey Mouse as opposed to leaning against my body or the couch. I just need to think about where I'm putting Colton. It's easy just to plop him down on the floor, but is he benefiting from that?

The game changer is Daddy. Daddy came to the meeting and learned about Colton's tricks. Our PT showed us things that Daddy can do with Colton at home when they're "playing." Why Daddy? Because Daddy is stronger. And to be honest, Daddy is more fun. Colton LOVES to wrestle and be rough with Daddy and Brother and some things they do can help build tone. The other night, Daddy got Colton to stand against the wall for 2 minutes straight because he was distracted and laughing as Daddy shot a Nerf gun at the wall next to him. Last night, he had Colton sitting on a bench and had him do at least 30 squats standing up to put a ball in a bucket. There were no tears. Daddy makes things more fun. And I have to say, I'm super proud of my husband! Every night since our meeting, he's made it a priority to work with Colton. He finds creative ways to "play" with him and Colton enjoys it.









If the three of us (me, daddy, and his PT) keep working at this consistently, Colton is going to TONE UP! We are going to give it our all these next 6 months! I'm so thankful for a husband that is willing to help. I'm so thankful for a PT that cares enough to show us what we can be doing at home. It takes a village! It will be SO worth it in the end. By golly, Colton is going to walk. And what a glorious day that will be!

Down Syndrome

Down Syndrome

When you hear those two words, you immediately have an emotional reaction. Unless you've experienced life with a person with Down Syndrome, I would venture to guess that your first reaction would be sadness. I think that when we told our family and friends that Colton had Down Syndrome, they were sad and heartbroken for our family. That was my first reaction. I was sad. MY baby boy was born with Down Syndrome. Whether you find out your baby has Down Syndrome at birth or as a prenatal diagnosis, it still makes you sad. But I wish I could change that initial reaction. Because Down Syndrome is not sad. Down Syndrome is beautiful. I never knew how happy Colton would make our lives. He is just the sweetest, funniest, happiest most easy-going baby I've ever had the privilege of knowing. Sure, he has off days where he's fussy and doesn't feel well...but 99% of the time he's an absolute joy to be around.

I recently saw a t-shirt that said, "Dinosaurs are scary. Down Syndrome isn't." One of the many reasons I started this blog is because I want people to see what our life is like with a child with Down Syndrome. And to be honest, our life is very normal. Colton is just like any other baby. He eats, sleeps, plays, cries, laughs, and makes dirty diapers. He gets into trouble for touching the fireplace or throwing food or putting inappropriate things into his mouth. I treat him just like I treat Weston. The only difference is that he's delayed. It takes him longer to learn to walk and talk and potty train, etc... But he will get there. He does have a few more doctor's appointments than Weston did and he does have to go to therapy, but even typical kids have to go to the doctor a lot or need therapy for one reason or another. Aside from the health complications, Down Syndrome isn't scary. Down syndrome is a blessing. Colton has changed my life for the better. I've learned to slow down and enjoy milestones as they come. I've learned to accept people for who they are. I've learned to cut parents some slack...we all are just doing the best we can for our children. I've learned that I'm strong. I've learned that life isn't so bad when you're forced out of our comfort zone. I've learned to make new friends.

I'm not going to say that having a child with Down Syndrome is easy. It's not easy. But whose life is easy? In the past few years, I watched people I love go through so many different things. Losing a parent, losing a baby, losing a job, losing a home, losing a spouse for various reasons, losing their health.... Life is just hard. We all have things we struggle with. I was reading a daily inspiration the other day that said, "Glory moments in difficult times are not dependent on our circumstances, but on our focus. Focus on the difficulty and God is difficult to see. Focus on God and glory seeps through the broken places."

When I focus on milestones and the future, I can get really sad about Colton having Down Syndrome. When will he walk? When will he talk? Will he have articulation issues? Will he get bullied? Will he struggle in school? Will he have friends? Will he ever drive a car? Will he live on his own? Will he have heart surgery? Will he feel loved and accepted? Will people treat him differently? And I become overwhelmed and just plain sad. But then I tell myself that I need to shift my focus. Let's not worry about the milestones and the future. Let's focus on how far Colton has come. Colton has head control. Colton can sit up. Colton can clap. Colton can say "Bye Bye." Colton can walk with his walker. Colton can army crawl and boot scoot. Colton can self feed. Colton can drink from a straw. Colton can say "MaMa." Colton is a high-fiving champ (and can now give me Knuckles). Colton can play with toys and destroy a room. Colton has come a LONG way since the day that he was born. No, it's not as fast as a typical kid, but he's making progress. He's learning and growing. And that is what matters. Focus on the good. Focus on what we know instead of what we don't know. I wanted to share some statistics.

Termination Rates for Down Syndrome:

US- 67% (1995-2011)
France- 77% (2015)
Denmark- 98% (2015)
Iceland- nearly 100% (currently trying to eliminate DS completely)

There are a lot of people out there that are given a DS diagnosis and they terminate the pregnancy. And that is heartbreaking. Most of the world does not want a "Colton" in their life. Boy are they missing out. Life without the "Colton's" of the world would be very sad. I hope and pray that my blog has changed your view of Down Syndrome. I hope that if you know someone that is given a Down Syndrome diagnosis, you will encourage them to give that baby a chance. Because that just might be the best thing that has ever happened to them.

My little boy simply has one extra chromosome. God made him extra special. He is so wanted and so loved. Down Syndrome isn't scary. Down Syndrome is beautiful. Life is better with Colton.

School!!

Colton has been doing Outpatient Therapy since he was 4 weeks old. He only qualified for PT for the first year. Next, we added Feeding Therapy and Speech. Then, Occupational Therapy. All summer I've been taking Colton to and from therapy appointments for a total of 7 hours per week. Colton is on our Insurance plan as his primary insurance, but he also has Medicaid (TEFRA) for his secondary Insurance. We pay a monthly premium for him to receive TEFRA. The application process for TEFRA is quite lengthy, and it has to be renewed each year, even though his diagnosis will never change. TEFRA will pay for Colton to receive therapy one of two ways: Outpatient therapy or attending FULL-TIME school (8-3 Monday thru Friday). I chose to do Outpatient Therapy for the first year and a half because frankly, I wasn't ready to give my baby away for full-time school. I knew that I'd be able to work with him at home and I had the flexibility and freedom to take him to and from his therapy sessions. But now that Colton is 19 months, we decided it was time to start full-time school.

Here are the main reasons why:

1. With Down Syndrome, early intervention is SO important. Colton can learn so many things at school just from watching the 9 other children in his classroom. They teach him to be more independent because his teachers cannot do everything for him when they have 9 other children to assist. As much as I try to help Colton, he is my child and I probably do more for him than I should do (like hold his drink cup or spoon feed him or carry him around too much). They have a curriculum at school and they have a central book for the week, they sing songs, they play on the playground, they do art projects, they play with developmentally appropriate toys, etc... There is structure. Colton doesn't have to spend time in his car seat while we drive brother to his things and to and from therapy appointments. Colton gets pulled out of class for ALL of his therapy services, so when I pick him up at 3:00, he's done for the day! I can take him home and just be MOM! And it takes the pressure off of me because as much as I try to be, I am not a therapist! His PT has him sitting in specific chairs throughout the day that help him strengthen his legs and core (which I do not have at home). Colton is getting SO much from attending full-time school.

2. The toddler class at Colton's school has 10 children. 5 children are typical. 5 children have special needs. Colton easily got a spot as one of the children with special needs because not as many children are diagnosed with special needs at birth. It can take until a child turns 3 or 4 or enters a preschool to determine that they might need more assistance from a developmental preschool....or that they could use therapy services. Therefore, the waiting list for the 3 year old and 4 year old classes can be long. We didn't want to wait too long and miss out on a wonderful school.


Last week was Colton's first week of school. I was a nervous wreck. I didn't know how he would do going ALL day EVERY day. I was worried about him sleeping on a cot. I was worried about what to pack for lunch. I was worried he might cry. I was just worried. Giving my baby away all day every day was a hard decision to make when I don't currently work. I wanted to just be selfish and keep him home with me...but I decided not to do that. Why? Because it's not about me. This is about Colton. I have to do what is best for my child....and I know deep down in my heart that Colton needs to go to school. I can't do everything for him. It's just too much. I don't want to be his therapist...I want to be his mom. When he's at school, his therapists can work around nap time, lunch time, absences...and they can pull him for his therapy sessions when the time is right. With outpatient therapy, I have to set times and hope those times work for the day.

So how was Colton's first week? FABULOUS! It brings me to tears just saying that. It was fabulous! It warms my heart SO much to know that he enjoyed his first week. His teacher gives me a sheet of paper with feedback each day and her comments were:

Colton had a wonderful first day! He is an absolute doll!

Colton LOVED music this morning! He also loved painting his school bus!

Colton LOVED playing ball with a friend. He was smiling and laughing! He can really throw! Another wonderful day. He is such a joy!

Colton had another wonderful day! He loved music and art. His school bus project is SO cute!

Colton had an awesome day. Thank you for sharing him with us. He is SO wonderful!


He ate ALL of his lunch every single day. He napped on his cot like a champ! He did not cry when I left him in the morning. I didn't have to sneak out, either. I just gave him a hug and kiss and told him Bye-Bye! He is loving his new school and his new friends. My heart is so happy! I am so proud of Colton! When I picked him up one day, he gave me three kisses on the mouth. He grins from ear to ear when I call his name to pick him up. One afternoon when I was carrying him down the hallway, he said "Ma-Ma....Ma-Ma." My heart about burst! When I sang the Wheels on the Bus (which was one of their songs for the week), he immediately started moving his arms as best he could in a circular motion for Round and Round. His face lit up like...Mom knows what song we sang at school?

It was the best first week and it totally reassured me that I have made the right decision in sending Colton to full-time school. I can't wait to watch him learn and grow this year. It's going to be pretty amazing! Here are two pictures that his teacher sent me this week (don't mind his messy clothes, that means he's having fun!)





Life without Colton during the day is a little strange, but I know that I'll get used to it in no time. I'm enjoying having some "me" time and I'm so ready to see him when I pick him up. It makes our evenings together so much more special. And I can go to bed knowing that we are doing everything we possibly can to help Colton become as high-functioning as possible!

Big Brother

One thing that I haven't talked about much is Weston, Colton's fabulous big brother. Weston was only 3.5 years old when Colton was born. His grandparents brought him up to the hospital soon after Colton was born. We introduced Weston to his little brother and of course, he loved him. However, Weston acted a little funny that day. Maybe he was jealous? Maybe he didn't like seeing Mommy hooked up to a bunch of wires? Or maybe he was scared because the grown-ups were crying? We tried so hard not to let him see us cry...but it was really hard. It was such an emotional day. We sent him home with grandparents so that we could have time to process the diagnosis. But by Day 2, we were ready to see our big boy again...and the initial shock had worn off (a little)...and it was time for Weston to love on his baby brother...







Weston absolutely adores his baby "buther." We decided that we weren't going to directly tell Weston about Colton's diagnosis until he started asking questions on his own. We wanted Weston to just see Colton as his baby brother. We didn't think he was mentally ready to comprehend something like Down Syndrome. We don't hide it from him, though. We talk about Down Syndrome in front of him. He knows that brother goes to a different school and he has teachers that help him learn to walk and talk and play. He thinks brother's school is awesome because of the gym. It has a trampoline, rock climbing wall, lots of swings and bikes, balance beam, ball pit, and foam pit. He has asked me if he went to brother's school when he was a little baby and I tell him, "No." But he doesn't dig deeper so I just let it go.

It's been 1.5 years since Colton joined our family and Weston still has not asked about it. I do think a part of him knows that something is different about his brother. Not in a bad way, but sometimes I can see the wheels turning in his head. For example, Weston has seen several little kids that are walking who look smaller than Colton. He will ask how old they are. When he hears they are 1, like his little brother, he says, "Our baby can't walk yet." I think he knows that Colton is behind a little...but only when we are out and about and he sees other babies. Weston is such a great big brother to Colton. He is very patient with him. He shares with him. He hugs and kisses him and helps him put his glasses back on when Colton takes them off. He will grab a walker and say, "Colton, look at me. This is how you walk." Or "Colton, look, this is how you crawl." He claps for Colton if he sees him self-feed. He will yell, "Mom, Colton just said Da-Da!!!!" Weston is so sweet to him...and it completely melts my heart. I can't wait to watch their relationship grow. I think it's gonna be so special. Nobody makes Weston laugh harder than Colton....and vice versa.

So now, I'm still waiting for Weston to ask about Colton. I think we are getting closer because Weston is about to turn 5. He's very smart and curious. I've spent lots of hours thinking about what I want to say to him...how I'm going to explain Down Syndrome. And I think I'm just going to be extremely straight-forward. Weston loves numbers, so I'm going to explain to him that we all have these little things in our bodies called chromosomes. Mommy, Daddy, and Weston have 46...but brother has 47. One extra chromosome that makes it harder for brother to walk, talk, and learn...but it makes brother extra special. God made brother special. And we are so very lucky to have such a special little boy in our family. A little boy who needs us to teach him how to do lots of new things. And God knew that you (Weston) would be the best big brother for Colton.

I keep praying that God will give me the words to say when Weston asks about his brother. But I know it won't change the way he feels about him. Colton hit the jackpot in the brother department. He is so lucky to have such a smart, sweet, patient, and funny big brother. In this picture, you can just see the adoration...

Keepin' It Real

I started this blog to share our journey and to inform people about Down Syndrome. But I also do it because it's therapeutic for me. It helps me to express my thoughts and feelings about having a child with Down Syndrome. Most days are good, really good. And I laugh and play and work with Colton...and he just melts my heart. But every few months or so, I have a day where I'm just defeated. I'm just tired....physically and emotionally. I don't want to have to worry about milestones or therapy sessions or how to motivate my child to do things. And I just have a long cry session...usually in the shower. Today is one of those days. I just want him to do what an 18 month old does. I just want to play with him and not have to feel guilty for not making him self-feed or hold his own juice cup or practice standing or strengthening his core. There are nights when I think back on our day together and I wonder if I did enough. Because I do have days when I don't do much "therapy" with him. I just let him be a kid and play like he wants to play; but then I get mad at myself because I do need to push him. Colton will not push himself. He's content just living how he's currently living. But I want more for him!

Another parent of a child with Special Needs recently said to me, "It's such a fine line we walk, pushing our boys to reach their potential but also accepting them just as they are." And it's so true. It's hard to find the right balance.

What is boils down to is that I just want the best for my child! I want him to be as normal as possible. I want him to walk and talk and play and have friends and learn and get a job and feel independent and loved and accepted. I want him to be the BEST! And he will be...but it just takes so much time and patience. I'm not only caring for my child and disciplining him and keeping him safe...I'm teaching him how to do EVERYTHING! And it's overwhelming and some days it just weighs heavy on my heart.

But tomorrow is a new day. And I'll be just fine. A good cry session is always good for the soul. I just need to focus on how far we've come...and not how far behind we are.

Now, excuse me while I go love on my little guy. Because nobody cuddles better than him, nobody kisses better than him, and nobody makes me feel more loved than him.

HE IS WORTH EVERY TEAR, EVERY HOUR OF LOST SLEEP...HE IS WORTH IT! AND HE IS MINE!




"Don't forget that you're human. It's okay to have a melt down. Just don't unpack and live there. Cry it out and then refocus on where you are headed."

18 Month Checkup

Friday morning, Colton had his 18 month checkup! He is still on the typical growth scale, so that's good news! His growth is starting to slow down, but she said that's normal for his age. Adults with Down Syndrome are usually pretty short, so I wasn't surprised to see that he was in a lower percentile for length. The biggest celebration for me is that his HEAD grew (1/4 inch)! Yay! Last time we went, his head hadn't grown and I had to go see a specialist. So, I just wanted to see some growth!
Here are his stats:

Weight: 23 lbs. 12 oz. (39th percentile)

Length: 31.5 inches (13th percentile)

Head: 18 1/4 inches (19th percentile)

It was a pretty easy checkup. Colton will stay on Zantac for his reflux. If he doesn't take it, I can tell that it starts to bother him, so I'm glad it does help. We are requesting a repeat Swallow Study to see if he has any improvement in swallowing liquids. Right now, I thicken all liquids to Stiff Honey. I know we won't be able to come off of thickeners completely, but it would be nice if we could just thicken to Honey or Nectar. His Speech Language Pathologist wants to come with me to the Swallow Study so that she can talk to the tech and ask questions that I wouldn't think to ask. If he still needs to thicken to Stiff Honey, then we are going to request an appointment with an ENT to see if there is something else going on with his throat other than the low muscle tone. Hopefully, the Swallow Study will happen at the end of August or early September.

Colton still only has 3 teeth (2 on bottom and one on top), but a few more are in the works right now. I'm SO ready for him to get some more teeth! I feel like he's been teething for months...and months...and months! Colton is a really great eater and will eat anything I feed him...but I have to feed it to him. I've tried to get him to pick things up and put them in his own mouth, but he just hasn't been interested. I finally decided that I had to find something that he REALLY wanted to eat. I went with something that I'd want to shove into my own mouth.....BROWNIES...and it worked!!!!!!!! HALLELUJAH!!!! I've never seen him so motivated to self-feed. Since then, he has fed himself pieces of grilled cheese and puffs. So we are making progress! And he can also hold his own cup! Yay! At least now I know that he can self-feed and hold his own cup if he wants to...he's just a mighty stubborn little dude, at times. Why feed yourself when mom will feed you if you make her wait long enough??? Hehehe.

Overall, his checkup went really well. I was very excited not to have a bunch of new doctors to go see. We will have our annual Genetics appointment soon and our repeat swallow study, but hopefully, that's it for a few months! Please continue to pray for Colton's heart. I pray that the holes in his heart close so that my sweet boy won't have to have open heart surgery in a few years. God, please close the holes in Colton's heart!!!

I just can't even begin to describe the love I have for this little boy. He is the sweetest, most loving, easy-going, happy baby! And I call him a baby because he is still very much a baby. The kisses, cuddles, and smiles that I get from him are the best! I feel like I'm looking into the eyes of an Angel when I'm with him. I never knew how happy this little boy was going to make me. Not a day goes by that I don't thank God for him. He melts my heart and is SO loved by my entire family. I'm thankful that God knew we needed him even before we knew it.

If you follow me on Instagram, you know that I post a lot of videos and pictures of him on a regular basis. If not, you're welcome to follow me @carriescott22. Here are a few pictures of my handsome little man taken in the last month...













In the last few months, Colton has really come alive. He has such a funny personality and has started actually playing with toys, rather then just throwing them. He especially loves playing with big brother's toys! He LOVES watching Mickey Mouse Clubhouse and will whip his head around to see the TV if he hears it first. He finally decided to start clapping....I'm not sure why it took so long but he decided he finally wanted to. He is army crawling all over my house and getting into trouble! I can tell that he's getting more body control, which is great! He loves emptying out my laundry basket and "helping" me with the laundry. He is starting to mimic more words. So far he's said ball, up, down, Mama, Dada, yeah, yay, bye bye, and more. The other day he even tried to mimic "brother." We are very proud of our little man!

Colton, we love you so much! Keep working hard!!!

18 Months!

18 months ago, the most precious soul joined our family.



Colton is the most easy-going baby. He's pretty much up for whatever we do as a family. When he was born, we were afraid we might be more limited in what we could do as a family because of his Special Needs, but we've quickly learned that is just not the case. We take Colton with us and let him experience everything Weston did as a baby. Colton is not afraid of water, he enjoys playing rough with daddy and brother, he is not startled by loud noises, and he's always up for new adventures. His latest adventure was this past weekend....



Oh, yes we did take that sweet boy tubing! And he absolutely LOVED it! I wish we could've zoomed in a little more on his face because he had the biggest smile! He also loves swimming and riding in the boat.



His prescription sunglasses are kinda my fav. They were expensive, but totally worth it. He owns more expensive sunglasses than I do!



At 18 months, Colton is still army crawling everywhere! He loves the fireplace and gives me the biggest smile when I tell him, "No!" His legs are getting stronger and he can pick us his feet to move them forward when I hold his hands to "walk." His legs are strong enough, but his mid-section is super loosey-goosey. The dude is like a noodle and he is just not stable when he "walks." His PT is ordering basically a unitard for him to wear under his clothes. It makes me laugh when I think about it. We are going to try to see if this will help him hold the middle together...much like spanks. We are anxiously awaiting for it to arrive. Haha. We aren't quite four-point crawling. I think Colton could do it...IF HE WANTED TO! He seriously fights not to do it. He can be SO strong and stubborn when he wants to be. Most days, he gives his PT a hard time. She works hard for the money....so hard for the money! He fights her during the hard stuff, and smiles at her during breaks. What a turkey!

Colton's new trick is to do, "Up, Down, Up Down, Up Down," with his arms. His daddy will say, "Up!" Colton slowly raises both arms up over his head, and as soon as daddy says, "Down!" he throws them down and smiles. It's so cute. They do it over and over and over. We don't have to show him how to play anymore...all we have to do is say the words and he knows the game. Sweet boy is learning! Speaking of words, his Speech Therapist and I think he's starting to say a few words. Last week, he said, "More." I've heard him say, "Ball," when we play ball. He can say, "Mama and Dada," but I can't be sure he associates them with meaning. My mother-in-law asked him if he wanted some juice the other day and she swears he said, "Yeah!" So it's good to see a few attempts at talking. Yay Colton!

We are still working on self-feeding. He can hold his own cup and squeeze pouch, if he wants to. He can pick up a piece of bread and put it in his mouth...but again, if he wants to! He's very capable when he's not being STUBBORN! I've been letting him help bring his spoon to his mouth and he's doing really well with that. He's throwing less food than before, so that's progress, too. He really will eat whatever I make for him...he's not picky! He can eat soft solids, which gives us a lot of options! He only has two bottom teeth and is starting to get one top tooth. So we are about to have 3 teeth! C'mon teeth! You're taking your sweet time!

Overall, Colton is doing really well. He is the busiest 1 year old I know! He goes to gymnastics on Mondays, therapy for 2 hours on Tuesday, therapy for 3 hours on Wednesday, therapy for 2 hours on Thursday, and he did an evening swim lesson in June. Colton will start full-time school soon. I really think it's the best thing for him. Early intervention is KEY in children with Down Syndrome. They usually plateau around age 12 or 13 (from what I hear), so it's so important for him to get help now! And Mama could use a break. Like seriously, I'm about to go to the doctor for my left wrist from carrying a 24 lb. weight everywhere I go...I've been in a lot of pain, lately. Most 18 month olds can walk, but I still have to carry him all of the time...but it won't be long. He WILL walk eventually.......and that day will be oh so exciting!!!!

Happy 1/2 birthday, Colton! We love you so very much!

Patience

Over the past 17 months, I've learned a lot of things. I've learned about Down Syndrome, the heart, swallow studies, low tone, occupational therapy, physical therapy, speech therapy, feeding techniques, Medicaid, etc... It has been quite an educational year. But I would say the hardest thing I've had to learn this year is...Patience.

Most kids are quick to grow up. Those milestones come so fast in that first year and before you know it you're chasing around a one year old who has a rapidly expanding vocabulary and you just want time to SLOW down! I experienced that...with Weston. He was running by 11 months and climbing out of his crib and constantly giving me heart attacks. And I was so tired and stressed out from chasing him around all day, every day. I didn't realize it then, but I didn't really appreciate how quickly he was reaching those milestones. And then God gave me Colton. And he is completely the opposite of my Weston. He does things at his own pace. Raising a child with Down Syndrome requires lots and lots of patience. There are days when I'm really good at being patient. But after a few weeks or months of working on the same skill, I begin to lose that patience. And it never fails that when I'm almost at my breaking point, Colton learns a new skill. And it may not be a big milestone like rolling, sitting, crawling, or standing, but it's a big skill for Colton....and it gives me that boost I need to keep on keeping on. And I know that is God's way of telling me..."It's ok, Carrie. See, he's getting there. Just be patient...just be patient."

The other day, Weston wanted to look at some old pictures on our computer. We came across pictures of Weston at 17 months old...and all of a sudden, I got really sad. I spent the whole day a little down in the dumps because I forgot where Weston was at 17 months. And I know that I can't compare my kids because it's not the same, it's not fair. It's like apples and oranges. But it still stings a little. Deep down in my heart, I know that Colton is going to four point crawl and pull to stand and walk and clap and sing and talk and run and jump and ride a bike....but it's just going to take a lot longer than it did for Weston. So there comes that word again...PATIENCE. Patience is hard for a person who likes numbers and timelines and plans...and I have to throw all of that out of the window while raising Colton. But that's ok...I'm learning. And when I get totally overwhelmed and stressed out, I pray about it and I remind myself of how far Colton has come in the last 17 months. He used to not be able to get his legs off of the ground while lying on his back because his abs were so weak. Now, he can bring both legs up toward the ceiling and slam then down on the ground like nobody's business. He likes to do that in the pool, too, and make a big ole' splash.

At 17 months, Colton sits really well. He loves to spin circles while sitting on his bottom. He can army crawl all over the house. His latest milestone is pushing himself up from laying to a sitting position (who knew that was a milestone? Don't kids just naturally do that?). He can hold his own sippy cup and squeeze pouch. He can blow kisses, when he wants to. He is a champ at giving high fives with both hands. He can turn the pages of a book. He can stand for longer periods of time, but be careful because when he decides he's done, he's done and will come crashing down. He's eating really well and sleeping really well. He has the cutest little personality and messes with me all of the time. He loves to throw things off of his highchair and even though I give him a stern "NO!," he will look me right in the eyes and slowly take that toy to the edge of the highchair and release it. He thinks that's funny! Mommy keeps a straight face and disciplines him, but I'm laughing inside. Because I LOVE to see that he's being intentional about that. He knows better! He does the same thing about taking off his glasses or crawling to touch things he's not supposed to touch. It really is hilarious! Colton is a babbler. He makes all kinds of sounds. His Speech Therapist said his babbling is progressing...so that's good! Colton will mimic me if he's in the right mood (sounds or faces or actions). And he is just the biggest lover. He loves to kiss and cuddle. Because of his low tone, Colton is the squishiest little guy. We call him our "Fluffy Marshmallow." Nobody hugs better than Colton! We are pretty fond of the little guy. I'm pretty sure he gets the top spot in being the family favorite (wink, wink).

Raising a child with Down Syndrome is really challenging...and it requires a lot of PATIENCE...but it is the most rewarding thing I've ever done. Nobody needs me more than Colton. Nobody loves me more than Colton. Colton is going to crawl and walk and talk...and he's going to do great things...it's just going to take time. In the meantime, we will continue to love him, practice with him, support him, and celebrate him.