Welcome to Holland

A friend shared this poem with me shortly after Colton was born. I remember reading it in the hospital with tears streaming down my face. What a beautiful poem. Life doesn't always play out the way we think it's going to play out...but that doesn't mean it won't be a fabulous journey. I get to experience Italy with Weston and Holland with Colton. My heart is full, and I thank God every day for my two most precious gifts.

Repeat Swallow Study at 8 Months

Yesterday, we went to Children's Hospital for our repeat Swallow Study. Colton isn't allowed to eat 3 hours before our appointment, so I had to wake him up from his nap to feed him earlier than normal. Poor baby! When we got to the Radiology Department, I was glad to see that we had the same Speech Pathologist as last time. His name was Drew. I think he remembered me...but not Colton. Colton's gotten rather large since our last visit at 2 months old. Hehe.

First, we went to a room to discuss Colton's current feeding schedule. I told him that we began introducing baby food once a day and he's been doing really well with it, but I wanted to make sure he wasn't aspirating on it. I told him that we thicken his bottles to Stiff Honey and I explained my current concoction of formula, rice cereal, and Thick It 2. He said that everything looks like it's working so far because he's obviously gaining weight and he hasn't had any respiratory illnesses which would be a result of aspirating.

Next, we went back to the X-Ray room. We strapped Colton in his highchair next to the machine. He was very cooperative and interested in what we were doing.



The X-Ray is on the right side and it shows his profile as he drinks a bottle. You can see the liquid entering his mouth and going down his throat because it has Barium in it. If he aspirates, you can see it go into the airway and we stop feeding him, immediately.



We started out using the Nuk bottle I brought from home. This is the bottle they recommended at our first Swallow Study because it has a flat-based nipple which is good for a low tone tongue. His tongue doesn't have to cup the nipple as much as a regular round nipple. They gave him Nectar thick formula. This is pretty thin, so he had trouble keeping up with the swallowing and did aspirate on it. So then we moved to Honey thick formula. He actually did pretty well on the Honey, compared to last time. He did swallow a good amount of it, but occasionally, he'd have a deep penetration (it would get into the yellow zone, which means it was headed to the airway, but he didn't always aspirate). After a little while of sucking, he finally did have an aspiration. However, he coughed when he aspirated. This is a good thing because at his last Swallow Study, he had silent aspirations....which can be very scary. This time, he noticed something wasn't right, so he coughed. His cough did not completely clear the airway, but he tried. We then tried Honey again with a different bottle and nipple (the MAM brand). This nipple also has a flat-based nipple, but it's not as big of a nipple so it's better for transitioning to a straw sippy cup. He did aspirate a little on the Honey thick, so we decided to stop the study. Drew said that he wasn't comfortable switching him to Honey just yet because he was having some deep penetrations and a few aspirations. I told him that this was completely fine with me. We've been doing Stiff Honey for awhile now and we are all used to it. He's doing well, he's not sick, he's gaining weight. If it ain't broke, don't fix it. So...we will stay at Stiff Honey.

We also discussed what this means when he turns 1 and leaves the bottle. We will have to thicken all of his liquids to Stiff Honey. Luckily, at age 1, we can change thickening products. He is currently using Thick-It 2, which does upset his tummy without the rice cereal. So, at 1, we can switch to Simply Thick (you have to be over the age of 1 to use this product). Simply Thick is a gel packet that you squeeze into liquids and shake/stir. The good thing about Simply Thick is that it's easier to carry around with you because it's in these little individual packets. Thick-It 2 is a big tub of Splenda looking powder.





Also, Simply Thick stays the same consistency throughout the day. You can mix it into apple juice in the morning and it will stay the same thickness all day long. With Thick-It 2, it continues to thicken until you have a nasty paste in the bottom of your bottle/cup. I can't make bottles too early or they will get way too thick to eat and I have to dilute it with water. My PCP can send a prescription for the Simply Thick to a nearby Nutrition Store and they will mail the product to my house, monthly. It's so nice and easy for me! We actually were getting too much Thick-It 2, so I had to call them and ask them to stop for a few months so that we could use what we had, first. It's been so easy! Hallelujah!

During the study, we also fed Colton some applesauce with Barium in it. He swallowed the applesauce just fine. He did not aspirate on it, so I was really happy to see that. Drew said that some of the baby foods are thinner than others, so if I'm concerned it's too thin, I can always add some Thick-It 2 to the food and stir. It might slightly alter the taste, but not too much.

We will go back for another study in 10-12 months. We are hoping by then, Colton won't have to thicken to Stiff Honey anymore. He will eventually outgrow this aspirating thing, but sometimes it just takes time. I told Drew that I'm still paranoid about starting solids with him. I was with Weston, too, because I HATE choking babies. It freaks me out! But with Colton, I'm especially anxious because I don't want him learning bad eating habits that can cause more speech problems in the future. Drew said that maybe I can have him reevaluated for Speech Therapy now that he's getting ready to start solid foods. I'm gonna ask about that next week at Access. Children with DS can have issues with tongue lateralization, which can make eating solids more difficult. Plus, he doesn't have any teeth yet. Drew said that a lot of kids with DS will put a solid on their tongue and swallow it whole because they don't know what to do with it. Another learning curve for us, but we will figure it out. We always do!

God, thank you for a baby that is eating well, gaining weight, and not suffering from any respiratory illnesses!

8 Months!

Colton (aka "Pudge") is officially 8 months old! We went to the ENT a few weeks ago and he weighed in at a whopping 21 pounds. I looked his stats up on the DS chart and he was in the 95th percentile for both height and weight. He is still such a BIG boy! He's so big, he's starting to grow out of his 9 month pajamas! Oops! Time for some new jams!



We still have not mastered the art of sitting up, but we still continue to practice. Part of the problem is just Colton. He doesn't like to sit up. Every time we try, he throws his body back and arches. I don't think he likes his tummy scrunched up....or maybe it's tight on his hamstrings??? Who knows...but I really wish he'd sit up! I think he'd find that it's much more enjoyable. Our PT suggested we get him a chair that has a high back to practice, but that is also short enough for his feet to reach the ground. You can see him sitting in the yellow chair above. I'm not holding onto him and he can sit for a good while before he falls over. But don't leave him there alone...that could be dangerous!
Speaking of dangerous, he loves to flip out of this chair. Don't let that smile fool you...



He loves to play in his Baby Einstein jumper and has started to jump lately...hooray!!!



He also can finally grab his feet! To some, that may seem like an easy skill, but for Colton, it's been hard. Due to his low tone, his abs weren't strong enough for him to get his legs off of the floor. But he has no trouble with that now. They still can't quite reach his mouth, but I'm okay with that.



Colton enjoys watching Baby Einstein. His big brother likes to watch it with him, too. They are so cute together.



Colton absolutely LOVES Weston. It's so sweet! The other day, Weston was telling me a story about Ninja Turtles and he was being very animated. I look over and Colton is watching Weston with the biggest grin on his face...then he started laughing out loud. Weston, of course, loved that he made brother laugh, so he kept doing it over and over. It just melted my heart. I wish I could've gotten it on video.

Colton is doing a great job with eating. I'm only feeding him baby food 1x each day until we have our Swallow Study on September 15th. I'm hoping that he won't have to have his formula thickened to Stiff Honey anymore, but if he does, it's not the end of the world. I just want to make sure he's not aspirating. I know that it can take a few years before they outgrow the aspirating stuff...but it would be nice if we only had to thicken to Honey or Nectar.



Colton is still a very happy baby. He eats well and sleeps well. He likes to play with his toys and roll around on the floor. Sometimes, he gets stuck and can't quite figure out what to do...



We are loving our "Pudge!" He's getting so big and so strong. He continues to go to PT 2x each week. We are hoping that he will begin sitting up soon and pulling up into the crawling position....but that crawling brings all kinds of trouble. I don't know that I'm ready for that just yet.

I found this poem the other day and I thought I'd share it. I think it's so sweet. Colton is such a blessing to our family. Life just wouldn't be the same without him. We love our chubby, happy, strong 8 month old!

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!