A Different Kind of Love

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



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



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

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



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



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



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

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

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

-Spectrum Superstars

Swallow Study #3 & ENT Visit (21 months)

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



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

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



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



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

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

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

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6