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.