Two

Two. That was our number. We both agreed a long time ago that we wanted two kids. We liked the idea that we wouldn't be outnumbered. That we'd have a good even number. Two and done. So, while I was pregnant with Colton, I treated my pregnancy as if it were my last. I was fully prepared to end that chapter of our lives. Then, Mr. Colton entered this world with the greatest surprise imaginable. Our hospital experience with Colton was not the joyous event that you picture after giving birth to a baby. It was sad. It was hard. It was scary. 2 days after Colton was born, Hunter says to me, "I think we should have a third." What? Mr. I'm only having 2 kids now suddenly has a change of heart?? And...you want to talk about this NOW? We haven't even left the hospital and I have a 2 day old and I'm still trying to recover from delivering a BABY! I was completely shocked. I told him that we'd talk about it later, but for now, let's focus on the baby I just gave birth to...

Over the past 6 months, we've talked about having a third child. We have three main reasons for wanting a third child...

1. Weston could use another sibling in the future so that he doesn't have to take care of his parents and his brother all by himself. Colton will be in his 50's when we are in our 80's. We probably won't be able to take care of him like we need to at that time in our lives. We don't want all of the responsibility to fall onto Weston's shoulders. Another sibling would help him share in the decision-making and care-taking process.

2. It would be nice for Colton to have bookends...an older and younger sibling to watch out for him. A bigger brother to look up to and strive to be like and a little sibling to push him, who will still be around when Weston moves out one day. Colton already adores his big brother. I can only imagine how much joy another brother/sister would bring him.

3. Closure for us. Although we absolutely love our Colton and wouldn't trade him for the world, his entrance into this world was heartbreaking. The last memories we have of giving birth to a baby are sad memories. I'd love to end on a high note. Please don't take that the wrong way...we LOVE LOVE LOVE Colton...but with his birth came some of the lowest moments of our lives. We've totally bounced back, but we can't redo those first days in the hospital. They are forever tattooed on our hearts.

It's not easy just to say, "Let's have a third child!" With it comes anxiety. I'm very anxious to try again. I've had 3 miscarriages in the past, and I also have a higher chance of having another child with DS. Sure, it's only 1%, but that's a higher chance than before I had Colton (which was 1/700 or so depending on what website you read). A lot of people tell me, "I don't know of a family that has 2 children with DS." Well....I happen to know 2 families that do. So...it can happen. But really, with any pregnancy, you never know whether or not your child will be born with any kind of chromosomal or health issue. A 3rd child could have something completely different. You just never know. And it's scary to think about. If he/she has DS, we've obviously been down that road and know what to do...and Colton would have a sibling just like him.

Already thinking about having a third child seems a little crazy, especially after all of the time I put into therapy with Colton, but next August, Colton will start going to school full-time. With all of the therapy services he will need, we feel that it is in his best interest to be at school. Early intervention is key...and as much as I'm not gonna be ready to let my baby go...I know that I need to. So, with Weston and Colton in school, I'll have more time to care for a third child.

Lately, I've just prayed about it. With Colton, I prayed for a "healthy" baby...and that's exactly what God gave me. But now...I've added another word. I pray for a "healthy, typical" baby. I don't know what the future holds for our family. Will we have 2 kids or 3 kids? Only time will tell. Weston tells me that "when brother gets a little bit bigger, I want you to have a girl baby." It makes me laugh because MY plans are not always HIS plans.

So...I just have to Let Go and Let God. I can't worry about things that are out of my control. But I can pray. And I'd like to ask for your prayers, too. Maybe sometime in the future, God will bless us with another beautiful baby...a beautiful, healthy, "typical" baby.

Two. That was our number. But maybe, just maybe, it will be three.

Life at 7 months

Mr. Colton is being followed by the Genetics Clinic at Arkansas Children's Hospital. They saw him shortly after he was born and wanted to see him again 6 months later. We went for our appointment last week. It's basically like any other well check, except he didn't get any shots. Our regular Pediatrician sees him, as well, so I always wondered why we had to be followed by Genetics, too. I think part of it may be for research, but most of it is to make sure we are doing everything for Colton that we should be doing. The Nurse Practitioner just asked me lots of questions about Colton (eating, sleeping, thyroid, swallow study, heart, therapy, etc...). She wanted me to make sure that at his 1 year check-up we have his thyroid checked again, along with his blood count. Children with DS are at a higher risk of having Leukemia...so we'll need to check his red and white blood cell counts just to make sure everything looks ok. She also wanted us to get an appointment with an ENT. Colton doesn't have any issues with ear infections, but because of his swallowing issues, she'd like for us to at least meet with an ENT so that we are being followed by one in case any problems arise in the future. We will meet with an ENT on August 19th. Colton will also have a repeat swallow study done on September 15th to see if he still needs his bottles thickened to stiff honey. Also, he's started eating Stage 1 baby food once a day, so we want to make sure he's not aspirating on that. Our Pediatrician told us that he most likely will be okay eating baby food because I can go at a slower pace while feeding him, as opposed to the quick "suck, swallow, suck, swallow" of a bottle. He will have time to swallow between bites. So far, he's doing great with baby food. He's had squash, green beans, sweet potatoes, apples, bananas, and pears. He seems to like them all, but I think he likes apples the most! I kind of thought spoon feeding him would be a nightmare because of tongue thrusting issues, but really, it hasn't been bad at all. I just put the spoon in his mouth and wait for him to suck the food off of the spoon. A speech therapist told me to avoid swiping the spoon on his top lip to get the food into his mouth. The slower, the better. So, we just take our time and let him eat as much or as little as he wants to.

At the appointment, Colton weighed in at a whopping 20 pounds and is in the 90th percentile for weight on the DS scale. He was in the 75-90th percentile for height, too. He's a BIG baby...DS or not! Here are some pics at his check-up:








My mom is so sweet and made flashcards for Colton to use. My therapist suggested we start with 5 and show them to Colton daily. She also suggested using actual pictures of things from our house so that Colton recognizes them. The funny thing is...Weston loves them, too! He likes to look at all 20 of them. Hey, it's good sight word practice so Colton is happy to share.



She also suggested that we use Cause & Effect toys with Colton. I went to Babies R Us and looked for some toys that would be developmentally appropriate for Colton. It's crazy how shopping for baby toys has completely changed. With Weston, I just bought what looked fun...but with Colton, I look to see which toys would be the most beneficial for his development. This toy is a great toy because he can push the button and the door pops open. It startles him every single time, but it's really good for him. He can't quite do it alone, but I help him and I know he'll be able to do it soon. And of course...Weston loves to play with it, too!



I also look at furniture around my house differently. What can I use to help Colton learn to sit? I found this little thing in Weston's room that was actually Hunter's from when he was a little boy. I don't really know it's original purpose, but for Colton, it's a desk to help him learn to sit.



He loves to arch back, so I have to put soft things behind him to fall on. We want him to fall so that he learns that arching back has consequences. He doesn't like to sit there very long, but some time is better than no time.

Colton has officially found his hands! 2 weeks ago, he just started staring at his hands and turning them front to back. It's funny to watch. That's a 4 month skill, but that's ok! He knows he has hands now, so we want him to realize that he can use those hands for lots of things. He has decided that he wants to join the Men's Gymnastics team to compete on the rings...



To you, grabbing those rings may not seem like much, but to us...PROGRESS!!!!!! Colton is doing really well with reaching his arms up to midline to grab at things. Hooray! I can actually lay him down on his playmat and he'll swat at toys and grab them for a long time. He will also roll and wiggle around a little. He got himself stuck the other day, but it didn't seem to bother him. It makes me so happy to see him moving and exploring on his own. I used to put him down and he'd roll to his stomach and get stuck and just scream. Now he will actually play independently so that Mama can get things done.



So...we are still working on rolling and sitting and reaching for toys. He has trouble rolling continuously because his hips get in the way. His therapist put these shorts on him that keep his legs together...we laughed at how tight they were. He's got quite some thighs.



He's also working on getting into the crawling position. It's gonna take some core strength for him to be able to sit and hold his crawling position...lots of sit-ups in our future. Hehe. I asked our therapist about some realistic goals as far as crawling and walking go. She said, "Crawl by 1, walk by 2." Sounds good to me...we got this!

Colton is doing so well. I'm just so proud of him. Little things he does make my day. We've worked hard for each little milestone. I know that he will continue to amaze me.

Colton, you are my hero and I am your biggest fan.

One Day At A Time

This morning, Hunter was home with us because he was waiting for a repairman to come to our house. He was sitting at the bar eating cereal while I was making Colton's morning bottle. He commented on how many things I needed to make his bottle. I had Nursery Water, Formula, Rice Cereal, Thick It, Zantac, and Gas Drops. We've added Zantac to his bottles twice a day to help with Reflux and Gas Drops because I think the baby food he eats once a day is causing gas pains. It's quite a process to make his bottles. Hunter helped make bottles with Weston, but with Colton, it's just easier for me to do it. The hard part is, they don't always turn out the same thickness so I sometimes have to adjust things on the fly. It's like my grandma's recipes...she's done it so many times, she just knows how much to add without really measuring it, so it's hard for me to recreate her dishes. Making Colton's bottles is the same. Sometimes, I feel like all I do is prepare and wash bottles. When we leave the house, I make Ziploc bags with his formula/rice cereal/thick it combo because it's too much stuff for those formula dispensers. I told Hunter that I only had 5 more months of bottle making and bottle washing...which is exciting....but also a little sad because that means he's growing up. I know that I will probably have to still use the Thick It for his milk, but that shouldn't require as many ingredients. At least I hope not!

I started thinking about the future with Colton, as I do frequently. There are so many unknowns...and at times, it's very scary and overwhelming. There's a Facebook group that's for parents who live in our area that have a child with DS. It's a great place to connect with other parents and ask questions/advice. Some of the things I read on there are very encouraging, while other things are very discouraging. I try not to let it bother me too much. I know that everyone's journey is different, just like with any child. No two kids are alike. So...all we can do is take it one day at a time. When Hunter worries and talks about something, I always tell him, "We'll cross that bridge when we get there." Why worry about things we can't control? One piece of advice I've read several times from parents who have an older child with DS is to worry less about the future, and enjoy your child at each new stage. After all, none of us know what tomorrow may bring. Again...one day at a time.

Hunter and I began watching the new season on A&E called "Born This Way." We're not around many adults with DS, so it's nice for us to see what they're like. They each have their own unique personalities, which is fun to watch. Some of them wear glasses, some don't. Some of them have a great vocabulary and speak well, while others are a little bit more difficult to understand. If you haven't watch an episode, you may want to give it a shot. It's nice to see how well these young adults are doing, but it's hard for me to imagine having a child like them someday. It's not a bad thing, just very surreal. Right now, he's just a baby who really acts like any other baby. Other than his low tone, you can't see much of a difference. It's just physical now...the cognitive delays aren't very obvious yet. But I know it's coming...and it puts a pit in my stomach and sometimes takes my breath away. I do have days when I wish he wasn't "Born This Way," but then he wouldn't be my Colton. My beautiful, sweet, happy Colton. It's gonna be a hard journey, but it will be a rewarding journey. 99% of the time I'm strong and positive and taking it one day at a time, but occasionally those fears and worries sneak through my mind and overwhelm me. And that's ok...because I'm human. I'm gonna have sad days, hard days...days I wish things were different. One thing I do every single day is listen to Christian radio...either KLOVE or Pandora. I like to do that while I'm driving in the car or while I'm getting ready each morning. It gives me peace and lets me know that I am not alone on this journey. A song that always brings me to tears is "Lord, I need you," by Matt Maher....

Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You...


Yesterday and today were hard days for me. I think I'm just tired. I've had both kids home all summer and I'm constantly torn between playing with Weston, doing chores, make sure Colton does his therapy (both physically and orally), and finding time for myself. I'm also realizing that this is the very first August since I started Pre-K that I'm not going back to school....as a student or a teacher. It just feels weird because I've done that for almost 30 years. But...I'm very excited to get to stay home with my boys. I can get more involved in their schools and make more memories with them. Pretty soon, we'll get into our routine and I'll miss these crazy summer days. But for now, I tell myself...

Just keep swimming. Just keep swimming. One day at a time, Carrie. One day at a time.

Smitten

Y'all.... This. Baby. I just can't even tell you how smitten I am with him. When I'm with him, I just can't help but kiss all over his face and smile. He makes my life SO happy! I love both of my babies something fierce, but I don't think I appreciated the baby phase with Weston as much because he was my first and I was more nervous. I wanted him to grow up too fast (I wanted him to sit up, crawl, walk, talk, go to the potty, etc...). I didn't realize how fast Weston would grow up...and I'm sad that he can already do those things and he's losing his baby fat and turning into a little boy....a little boy who's about to be 4!



So with Colton, I'm appreciating the baby phase more. And obviously, I'm celebrating the milestones more...but only because Colton has to work SO much harder to reach those milestones. We've been working on prop sitting, which he can do when he wants to. If he doesn't want to, he arches back and wiggles out of it and it frustrates me because I know he can do it! The other day, I sat in front of him and sang to him and talked to him and he prop sat for over 1 minute. Little turkey! We did some prop sitting at the beach...which was great because the sand was packed tight and he does better on a harder surface. Plus, you can't beat looking at the ocean during some therapy time. He loved it! And I was not holding him up one bit.





He also did some tummy time at the beach. Again, the hard sand it easier for him to push off of with his arms. Colton is a beach and boat baby! He definitely got some sun because I can see tan lines in his ankle creases....hehehe. It cracks me up!





He also likes to swim. He splashes those arms and kicks those legs and his entire face lights up with excitement. Water therapy is great for him! You are a little more aware of where your body is in space when you're in water, so my PT suggested we let him swim a lot. I never knew he'd want to scuba dive on his own...



As you can see, we just got back from a beach trip. I took my 2 little boys to Florida on an airplane...BY MYSELF! I was really nervous for the trip, but the boys were great! Never once did I think, WHY DID I DO THIS??? I had the double stroller and my Baby Bjorn to strap Colton to me when I needed my arms free. Weston watched movies on the plane, ate lots of candy (bribing works), and played with toys. Colton ate a bottle as we took off so that his ears wouldn't hurt, slept, and watched his brother play. Colton is such an easy baby, so that's part of the reason why I was willing to fly alone. He's content usually anywhere we go, so I was confident he'd fly like a champ. We are home now and back to reality. Colton goes to PT tomorrow and hasn't been in 11 days...hoping he doesn't cry the entire time like he did after our last trip. His therapy gym isn't as pretty as the beach. But...hopefully he'll show off his new skills....like rolling from back to front to back again(in the same direction). That's one of our new tricks...hooray!!!!!!!!! Colton is becoming more dangerous...and that makes me smile!

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.