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.

The Lucky Few

This book came out last month, and when I heard about it, I knew I just had to have it. Today, I finally made my way over to Barnes & Noble to buy it. I've only made it through the first chapter and I already love it. I can't wait to read more. If you are fostering, adopting, struggling with infertility, or parenting a child with Special Needs, this book is for you. But really, I think anyone can find a way to relate to this book as it is about "Embracing the Gift of the Unexpected." And I do believe that unexpected things happen to all of us.

"The Lucky Few..." I hear those three words used a lot now that I have a child with Down Syndrome. And I have to admit, that on the day of Colton's birth when I first heard his diagnosis, I didn't feel so "lucky." I felt sad and cheated. My life was this beautiful vase...just what I always wanted...and in an instant, that vase was thrown to the ground and immediately shattered into a million tiny pieces. I didn't know how I was ever going to pick all of those pieces up and put them back together. I was so angry that my vase was broken...I didn't want to have to fix it. And the harsh reality was that vase was permanently broken...and it would never be the same. So...I had two choices: leave the broken pieces all over the floor and wallow in my sorrows, or put the pieces back together and create a different, but equally beautiful vase. Obviously, I chose the latter.

In this book, the author, Heather Avis, says, "I didn't know then that easy and normal and nice would do little to build my character or make me a better and more complete human being. Somewhere off the rose-petal path where easy, normal, and nice bloom, true beauty lives in the muck. But only the lucky few of us who step off the path will find it. My luck began when God picked me up off the comfortable path I had paved for myself and drop-kicked me into the mud. In the beginning, all I wanted to see was the grime on my clothes and the dirt on my hands. But because of God's grace, I finally stopped looking for a way back to my own plans. And the farther I stepped from that pretty path of easy, normal, and nice, the more clearly I could see the beauty he was creating all around me."

Colton's diagnosis was the hardest thing that's ever happened to me...but it's also been the best thing that's ever happened to me. I never knew how strong I was. I never knew how much I needed God. The only way to survive this is WITH HIM. I trust that His plans are greater than my plans. My relationship with God has strengthened so much throughout this journey. Almost every Sunday during worship, my eyes well up with tears and I get a knot in my throat...but not because I'm sad...because I'm so thankful that He knew how much I needed Colton. If I was the author of my story, Colton wouldn't have been in it...and now, I can't imagine my story without him. God knows best....and at times, we don't know how He's going to take our current struggle and make it into something beautiful...but He will. You just have to Trust Him and be patient.

My sister-in-law sent me a text last week after Colton's Cardiology appointment. It was one of the sweetest things anyone has ever said to me about Colton and my blog. She said, "I appreciate your blog more than you could imagine because it strangely makes me feel more connected to God. Colton's smile and seemingly unaffected spirits demonstrates His presence more than I have ever experienced. It's like Colton knows something we don't. Looking into your child's beautiful smiling face tells me that he's going to be just fine and God has a plan in action that we can't quite see yet."

At the beginning of this journey, I didn't feel so "lucky." I was forced "off the comfortable path" and led into the unknown and I was terrified. But it has inspired me to share Colton's story and life with you through this blog. And I hope and pray that it helps you to feel God's presence like it does for my sister-in-law. I have come to realize that when I gave birth to Colton, I actually hit the jackpot...and I am forever inducted into a club that goes by the name, "The Lucky Few."

Colton's Heart (15 months)

Let me preface this by saying...I am not a doctor. I just try to listen to what the doctor tells me and put that into words for you guys. It's hard and complicated and I try my best...so please forgive me if I'm inaccurate about anything. This is a new world for me and lots of new vocabulary is thrown my way on a daily basis.

We found out last year that Colton has an ASD (Atrial Septal Defect). The wall between his right and left atria has multiple holes that allow blood to go back and forth like a trap door. His right atria is dilated because of the extra blood allowed in that chamber. This is part of the reason his PCP was concerned he had Dextrocardia because an X-ray makes his right atria look enlarged...therefore, backwards in his chest. It is not backwards, just dilated. We were told that there's a chance those holes would close on their own over time. We went in for our annual checkup today and I was hopeful to hear good news. Thankfully, Colton was in good spirits. This kid has a heart of gold.



They did an Echo on Colton's heart. He was very wiggly, but he didn't cry. We just sang songs to him and he did really well.




Unfortunately, we didn't get good news....



Colton still has several moderate holes between his two atria. Blood is going back and forth more than it was a year ago. It's called "Fenestrated ASD's." Here's the picture she drew for me...



It's not something that requires immediate attention, but she said he will have to have a procedure done in the future to fix it. There are basically two options.

Option 1: Use a device to go through a vein in the leg to close the holes (Cath)

Option 2: Open Heart Surgery

At this time, she's not sure if Option 1 will work because he has several pretty good sized holes that need to be closed. She said that technology is constantly changing and getting better, so maybe in the future this would be an option, but she can't promise that right now. She wants us to come back in one year to check his heart. At that time, they will speak to a team to see if Option 1 will work for Colton. If so, he'd have that procedure done between Age 2-3. If that won't work for him, they will want to do Open Heart Surgery but would wait until he's at least 4 years old to do so. So...nothing would be done right away. This is something that he can live with for awhile and be ok. He has no restrictions and is able to continue all physical activity. He is asymptomatic.

Now....I did tell her about his lack of head growth and that we were meeting with Neuro-Surgery in the next month. She said that if for any reason Colton has to have surgery on his head, he cannot do so until his heart is fixed first. She said that there is a risk of Air of some kind getting in there during surgery that would cause problems with his heart?? I was a little confused about that...but....she said it is VERY important to let them know that he has "Fenestrated ASD's" and those need to be fixed first.

So, we are hoping we can just wait a year to go back to have his heart checked. At that time, we will decide the best course of action to fix Colton's heart. However, if we find that we have issues with his head that need to be fixed, then we will have to go down that path sooner.

This appointment was hard on my Mommy heart. This was not the news I was expecting. All I can do is focus on the positive. Colton is not in need of emergency surgery. Colton is healthy. Colton can resume all of his daily activities without any worries. God is bigger than the holes in Colton's heart. Miracles can happen. I'm gonna pray that Colton's holes in his heart close. I'm gonna pray that Colton will not need to have a procedure done. But if he does...we will get through it.

"The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2

15 Month Checkup

Colton had his 15 month checkup today! Here are his stats:

Weight: 23 lbs. 7 oz (60th percentile)

Height: 30 3/4 inches (33rd percentile)

Head: 18 inches (20th percentile)



These percentiles are for a typical baby. He's still killin' it in the weight department! Woohoo! We've been doing feeding therapy for several months now and Colton is doing really well. We are trying to cut back on formula and introduce milk. He still gets a morning and evening bottle. Colton is doing great drinking from a straw cup. We are trying to transition him from sucking with his tongue to sucking with his lips. All babies suck with their tongue because of a nipple...but as they get older, they learn to suck with their lips, keeping their tongue in their mouth. The Honey Bear Straw cup is great because we can adjust the length of the straw. The longer the straw, the more he sucks with his tongue. So at therapy, we work on shortening that straw so that he really has to use his lips to suck. Sucking is so good for the muscles in his face and mouth. We want those muscles to stay toned. Colton is now eating soft solids and can eat squeeze pouches. Our goal is to eat a protein, starch, and fruit/vegetable for meals. Colton can eat small bites of turkey, hot dogs, chicken nuggets, macaroni and cheese, spaghetti, toast, carrots, sweet potatoes, mashed potatoes, yogurt, applesauce, oatmeal, puffs, grilled cheese, meltables, etc.... I am SO pumped that he's able to eat a wide variety of foods. He does not gag on foods like he used to. Progress!!!!!!!! Now, Colton does not self feed. We are really working on that. Most babies put everything in their mouth...and they are supposed to...not Colton! Which you think is a good thing until your baby doesn't even want to put food or utensils in his/her mouth. Yesterday at therapy, we got Colton to put a veggie straw in his mouth, sucking off the salt. Yay!! It's a start! His therapist also put vanilla pudding all over his tray to let him play and explore and he did take a graham cracker stick dipped in pudding and put it in his mouth. Baby steps! He is a really good eater...and I'm thankful that he's at a healthy weight.



Colton's face here cracks me up. He loves to babble. He can do the following consonants: M, N, B, D, G, and W. My favorite sound he makes is "Whoa!" He gets those lips pursed like the picture above and says it over and over...especially when he's excited about something like a dangling necklace. If you are wearing a necklace or stethoscope or lanyard, watch out! That kid loves things that dangle. Colton is very expressive with his face and his voice. He makes all kinds of faces these days and loves to make his voice high and low and loud and soft. He woke up early the other day so I put him in bed between us and kept telling him he was with "Mama Dada." I repeat things a lot for him and a few minutes later he said "Mama Dada." He can say both separately but I've never heard him string them both together. I was very proud of him. His babbling is progressing. He's starting to sound like he's speaking a language. He's really trying to communicate. He also likes to mimic, if he's in the mood. He was in the driveway the other day with our neighbor and she would pat her mouth while making noises...when she'd stop, he'd do the same thing to his mouth. They kept going back and forth. It was so sweet! I'm so thankful for the help with "therapy."



Colton is going to start doing 3 hours of PT each week. We've gotta get that kid moving more.

Think about this: You are all warm and cozy in your bed and the alarm goes off. You hit snooze so you can stay in bed just a little longer....but eventually you have to drag your body out of bed and get the day started. It takes so much energy to do that.

Well....that's how Colton feels all of the time. Because of his low tone, things are hard for him. It's a lot of work to move that 23 lb. body around. So...Colton is pretty content to just stay on his tummy or sit on his bottom. He has to REALLY want something to put forth the effort to go get it. And if it's too far way, forget about it. It's not worth it to him. Bless his heart. So finding what motivates Colton to move is a challenge. And that changes from day to day. Sometimes I get out the vacuum because he likes that dangling cord and I want him to try to move. He can army crawl if he really wants to...and he's getting more curious...so that helps. He's starting to move more and more...which is good because we need those muscles to get stronger. He does not get into 4 point yet (hands and knees crawling position). We practice that at therapy a lot. Colton moves like a 7 month old mainly because he can't do 4 point yet. Because I have to carry Colton around so much, I am constantly tight. My neck and shoulders always have knots...and my lower back is sore on a regular basis. But I have some pretty awesome biceps. If you see me this summer, don't laugh at me for being Rambo....seriously! I'm ready for Colton to start moving more so that I can get a break. It's hard out in public with a 15 month old that can't stand up and hates the stroller.



So...Colton's growth is looking pretty good...except for his head. Today, we noticed that his head hasn't grown since his last checkup. Our Pediatrician said that she wants to refer us to Neuro-Surgery just to check to make sure his growth plates haven't already closed. She said that normally kids whose growth plates have closed at an early age have a really funny shaped head. His head shape doesn't look funny....so she said she's not too worried. But she is being a little cautious and would like to have it looked at. We are waiting to hear when that appointment will be. If his growth plates have closed, he won't have room for his brain to grow; therefore, he will need surgery to fix it. We are praying that that is not the case. I'm just hoping that his head will start to grow more in the next few months. She said she's not too concerned, but definitely wants to have it looked at just in case. So please pray that Colton doesn't have any issues with his growth plates.

We head to the heart doctor on Tuesday for his annual checkup. We are hoping that the small holes from his ASD are the same size or smaller. It would be wonderful to hear that the holes are closing up on their own. If they aren't closed yet, they will just wait another year or two to see if they will keep getting smaller. Prayers for that appointment would be appreciated, as well.

Colton is doing really well. He couldn't be getting any more help. We have been blessed with a great team of people that are helping us navigate this new life. Everyone has been so positive and supportive. I haven't had any negative experiences. And it's amazing to me how many people are drawn to Colton. Everywhere we go people talk to Colton and comment on him or his glasses. Yesterday, 6 different people in Walmart stopped me. One lady said..."You know you have a jewel with this one. They are the most precious people." She's right. Colton is such a precious little guy. We just adore him.

Life at 13 and 14 months!

Well...March happened. It's been pretty busy around here. I haven't even found time to blog. We've been busy getting glasses and AFO's, going to and from doctor's appointments, attending birthday parties, going snow skiing, doing therapy, and getting evaluated.

Let's start with glasses. My, oh, my. Just when I thought my Colton couldn't get any cuter. We found the perfect glasses for him...and he's doing so well with them! Occasionally, he pulls them off and plays with them....but for the most part, he keeps them on. I think he realizes that he really needs them to see. It was fun to watch him when he first got them. He's farsighted, so seeing things up close has been hard. The first night he got glasses, he sat in his highchair with two brightly colored spoons and would wave them around and look at them and bang them together. He would stare at toys that he's been playing with for months...who knew they were so bright and fun!
Now, keeping them clean...that's no fun. I am always taking them off and wiping them...but that's just part of the job. I'm just glad that he can see now!






I've been singing..."I can see clearly now with glasses on..."

We also got our AFO's (ankle braces). Watching his PT cast him was quite impressive. I'm learning all kinds of new things. We picked out Ninja Turtles so that big brother would think they were "super cool!" Colton doesn't have to wear them all of the time, yet. We only wear them when we practice standing so that they help support his ankles and feet. We are trying to stabilize his ankles so that we can work on strengthening his thighs. Once he starts standing and taking steps, he will wear them more often. His New Balance shoes came with them because they are Wide and his AFO's will fit down inside of them. Putting those things on is NO JOKE! Whew...it's gonna take some getting used to...

















And not only are we sporting new glasses and AFO's....but we are finally sporting... A TOOTH!!!!!!!

Hallelujah! We got our first tooth! It only took 13 months...but we did it! It's on the bottom.



Who knows when we will get more....or where they will appear in his mouth...but at least we've got one to work with. Hahaha.

Colton just got re-evaluated in Speech, OT, and PT. Colton will qualify for all 3. Speech has two parts: Feeding & Language. So far, he's just been doing Feeding Therapy and PT....so pretty soon we will add the others. Looks like he will need to be at therapy approximately 8 hours each week. Hopefully, we will find a schedule that works for us until he starts school in August. I'm just thankful that Colton is getting the help he needs to be successful. We couldn't be trying any harder. Only the best for our Colton Bear.

Perspective

Perspective: A particular attitude toward or way of regarding something; a point of view.

If I had to choose the greatest lesson I've learned since hearing Colton's diagnosis, it would have to be Perspective.

I have my days when I'm stressed or sad that Colton has DS. I think back to when Weston, my oldest son, was 13 months old. There were so many things that I took for granted. Weston could crawl, walk, run, climb, jump, clap, wave, self-feed, swallow liquids, see, and rarely went to the doctor. Weston grew up so fast and those milestones flew by...and I didn't appreciate them. I remember being so physically tired because all I did was chase him around and make sure he didn't hurt himself every second of every day. And now, with Colton, I so wish I was chasing him around and watching him blow through those milestones. Colton is making progress...but that progress is really, really slow. Things that Weston picked up naturally, Colton doesn't. I have to teach him how to sit up from lying on his back. I have to teach him to put things in his mouth. I have to teach him how to suck from a straw. We haven't lowered his crib mattress because he can't pull to his knees or pull to stand. I'm not chasing him all over the house because he will pretty much stay where I put him....with the exception of a few rolls in either direction. In some ways, Colton is easier...but only because he's not blowing through milestones like Weston did. Weston was physically exhausting. Colton is mentally exhausting.

But when I have my down days...I try to put things into Perspective. To think about things from somebody else's point of view. There are so many people out there who wish they were in my shoes. Who wish they had a child to love and teach. I recently heard about a lady who found out her baby had Trisomy 18 and he won't live more than a few days after birth. She wishes she had a child with Trisomy 21 that could live a long life. There are people out there that have lost a child or who can't get pregnant. They would long to have a child, even with special needs. I hear about these things all of the time...and I know that God is the reason. He knows just how to put people in my life at the right time...to give me perspective. To show me that what I'm going through isn't so bad. To show me that I'm blessed. That I'm the lucky one. I have a beautiful, healthy baby boy. His smile and pure happiness draw people in EVERYWHERE I go. They always comment on Colton. He makes people happy. He makes me happy. Yes, he's behind...but in the big picture of life...does that really matter? Who cares when he crawls or when he walks or when he reads? He will get there...at his own pace. Don't we all just want our children to be happy...to be good people...to bring joy to those around them?





I want to use my experiences to help others. Having Colton has changed my world...my perspective. I want to encourage you...when you're having a down day and you're feeling sad, stressed, tired, cheated, etc... Try to put yourself in somebody else's shoes. There's someone out there who would love to have a husband to fight with, a child to work with or chase, a husband who has a job that requires him to work late or travel, a house to live in, a mom or dad to call in times of need, a car to get them places, etc... You can always find the positive in your life. Nobody's life is perfect. We all go through tough times and wish things were different. Life is all about Perspective. Find the good in your life...and remember, somebody out there would love to be in your shoes. "Being happy doesn't mean everything is perfect; it means you've decided to see beyond the imperfections and enjoy the day."


"If you change the way you look at things, the things you look at change." Dr. Wayne Dyer

"The right perspective makes the impossible possible."

Ophthalmology Appointment

Guess who's getting glasses??????



Colton is!!!!!!!!!!!!!!!!!!!!!!

We took Colton to get his eyes checked last week because he's had one eye that would turn in every now and then. I noticed that it would happen more when he was tired. I had no idea what to expect at the appointment because our family has never had glasses. What would they even do with a baby that can't read an eye chart? But we both were about to find out...



Well...they put eye drops in his eyes to dilate his pupils. Then after a few minutes, the doctor came in and shined a few lights into his eyes. He then grabbed some lens looking things and held them over each eye until he found a lens that worked for Colton. The good news is that Colton doesn't have Glaucoma. So his eyes are healthy. The bad news is that Colton is farsighted, which means that he has trouble seeing things up close. Most adults become farsighted as they age and need to get a pair of readers to help them see things up close. Colton needs a +5 in both eyes. For people with glasses, that might mean something to you. To me, it meant nothing. But...I hear that's pretty significant. The doctor held up some lenses for me to look through to see how Colton sees. It was pretty blurry to me and kind of made me dizzy. The doctor told me that the reason Colton's eye would turn in was because he was trying so hard to focus on things up close, that one of his eyes would move too far in. It makes sense. It also might be why he's had more trouble grabbing at things in front of him like puffs or toys. Feeding yourself might be hard if you can't even see the puffs clearly in front of you. Glasses might open up a whole new world for Mr. Colton. He doesn't seem too mad about it.



They sent me away with a prescription and told me to go get him some glasses. I was like...UMMMMM.....OK???? I wasn't sure what I was supposed to do. This is all new to me. He did tell me that since children with DS don't have much of a nasal bridge, there are certain glasses that are better for them. He couldn't remember the name and said their facility didn't carry any, but thankfully, I have a Facebook Group that came to my rescue. Some suggestions were: Specs4us (Erin's World) or Dilly Dally. I called an Eyecare place nearby and they can help me. They said to bring him in and we can try some on and look through a catalog to order a few pairs we're interested in. When those come in, we can take him back to see if we like the way they fit. I want to make sure they fit well so that he isn't able to grab them and throw them across the room.....which I'm sure will still happen ALL OF THE TIME!

I have to admit that finding out that Colton needs glasses hurt my heart a little. I was a little bummed. In the big picture of life is it really a big deal? No. But it's one more thing to deal with. In the beginning, I'm gonna have to put those things on and off multiple times a day. It's gonna be hard at first, but he'll get used to wearing them. I'm hoping that he realizes how much better they make his world and he wants to wear them. But in the end, it's not about me. It's about Colton....and I want him to be able to see! So we are gonna go pick out some glasses and he's gonna ROCK them. I mean, he's gonna be pretty darn cute in some glasses. My project this week is to go find the right pair for him. Stay tuned for pics of the new and improved Colton!