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!

Dextrocardia???

Well, we've had an interesting few days. Last week, Colton was diagnosed with an ear infection in his right ear. He was put on an antibiotic. Last Friday, he woke up from a nap with a 103.6 degree fever (even though he'd been on an antibiotic for 3 full days). I called the doctor's office and told them and they asked me to come in the next morning (Saturday) to check him again. Our doctor said she wanted to make sure she didn't miss anything, so she did a strep test, flu test, and a chest X-ray to check for pneumonia. Luckily, all tests came back negative. She thinks he just got a Viral Infection on top of his Ear Infection. We had to take pictures of him while we waited for all of the test results...









But after his chest X-ray, she told me that she was a little concerned with the way his heart looked on the X-ray. She compared it to an X-ray he had as a 2 months old, and they looked the same. She was suspicious that Colton could have Dextrocardia, a rare heart condition in which your heart points toward the right side of you chest instead of the left (basically flipped 180 degrees like a mirror image). She told me not to worry because people can live completely normal lives with Dextrocardia. Also, you can have Situs Inversus, which means your liver, spleen, or other organs are located on the opposite side of the body. It's important to know this so that when a doctor treats you, they'll know your organs are reversed in case you have Appendicitis, etc.... Who knew?? Less than 1% of the general population is born with this. But she told me not to worry...ummmm....YEAH RIGHT! What mom wants to hear that their child's heart and organs might be flipped backwards??????

On Monday, she had several other doctors look at his X-rays and they agreed it just didn't look normal. So, she personally called me and asked me to go to the Children's Hospital to have Radiology do a chest X-ray and an abdominal X-ray. I took him there this morning because I was a little anxious. I just couldn't believe that this was something his Cardiologist would have missed. "Oh yeah, we forgot to tell you...your child's heart is backwards." That might be an important thing to notice? He's had 4 Echos read by multiple doctors, so I just didn't think this could be possible. A child with DS can have so many heart defects, that a Cardiologist would've looked at his heart very carefully....but there's that little bit of doubt that creeps into the back of your mind. What if they missed it? What if it is true?

We had to wait for an hour in the waiting room. It took two of us to hold Colton down for the X-ray. He wasn't upset or crying, but I had to hold him arms and she had to hold his legs because he was able to wiggle out from under the weighted pillows she placed on top of legs. That little turkey. They took the two X-rays and told us they'd fax the results to our Pediatrician. More waiting....

But guess what?????? My doctor just called me. Everything came back NORMAL! Hallelujah! His heart and organs are perfectly normal! She said that his Right Atria is mildly enlarged, which made it look abnormal on his chest X-ray. She said she was so sorry that she made me go do that but she just wanted to make sure. I told her not to worry about it because I appreciate the fact that she cared and was looking at his X-ray very carefully. I'd rather her be cautious than to overlook something important.

But hey....I learned something new. Dextrocardia is a thing. People can live with their heart and organs completely backwards. It's very rare, but it can happen. I'm just glad my Colton doesn't have to live with it. One less thing to worry about.

Today, I'm thankful for good test results, good doctors, the ability to learn new things, and a little boy who is fever free and feeling much better.

One Year Check-Up

Colton had his one year check-up last week! He was very happy in the waiting room.





And he tore up the paper on the exam table while we waited in our room. He loves the sound it makes and the fact that he can rip pieces apart. So fun to watch him explore!





I was happy to hear that he's still doing really well, but was not happy to find out that he had to have 4 shots and had to have blood drawn to check his Thyroid & CBC. He was plenty mad after the shots, but absolutely hysterical after he had to be stuck TWICE for blood because the first one wasn't working. BROKE MY HEART!!!! Poor baby Colton! The nurse and I had to pin him down for way too long.



But...the nurses were so sweet to him and sang to him and kissed his cheeks. They really liked Mr. Colton.

My Pediatrician told me that kids with DS usually slow down on their growth between 9 and 18 months. Colton's percentiles aren't as high as they were at his last check-up, but she said she likes his growth and that he's doing well. He's pretty average on the "typical" scale but very tall and heavy on the DS scale. We still have a pretty big boy! Here are his percentiles...

Weight: 22 lbs 10 oz (46th percentile)

Height: 29.5 inches (39th percentile)

Head: 18 inches (29th percentile)


Colton's lungs sound good and his ears look good. He will have an Audiology appointment in March for his annual hearing check. She also said it's time for a Vision check. We were referred to an Ophthalmologist and are waiting to hear when that will be. Colton does have one eye that tends to turn in at times when he's trying to focus or if he's sleepy. I'll be interested to see if that's something that needs attention. His heart still has a murmur, but she said it's pretty loud. Loud is actually good. Murmurs get louder as the holes in the heart get smaller. So, hopefully when we have a follow-up Cardiology appointment in the future, we will see some of those holes from his ASD shrinking.

We are going to switch from Thick-It 2 to Simply Thick. This is a thickener that we use to thicken his liquids. Simply Thick cannot be used until after the Age of 1, so we are excited we can finally switch. I've heard Simply Thick is way more consistent than Thick-It 2. It's more of a gel to add to his drinks than a powder. It should be easier to take with me when we are out and about because it comes in packets. Also, I can mix his drinks ahead of time and they won't keep thickening to cement like they do with the Thick-It 2.

As far as feeding goes, she wants me to keep him on Formula for a few more months until he's fully eating table foods. Right now, we are just doing purees and slowly adding solids because of his sensitive gag reflex. He's getting better, but we need him to be eating more calories before we stop formula. She said hopefully by 15 months he'll be ready to switch to milk, but if not, we could do Boost or Pediasure instead of formula. So we will continue to do bottles for a few more months until his eating progresses.

Colton will be getting AFO's for his ankles (ankle braces that go inside his shoes). Our PT wants to stabilize his ankles so that we can practice strengthening his legs from the knee and up. We are beginning to practice standing at therapy, and we want to make sure his ankles are well supported. Our Pediatrician has to give us a prescription in order to get those AFO's. Tomorrow, his PT will cast his legs so that they can make AFO's just for him. He's actually pretty good at standing...his legs are really strong. He just needs support so that he can stand longer without getting tired. I just had to share this picture again of him standing. He is so proud!



And here he is practicing at the Athletic Club.



He's not a fan of crawling yet, but we are trying to get him moving. His upper body isn't quite as strong as his lower body. I think in a few more weeks he will get there. We just need lots and lots of practice and motivation.

Every year, Colton has to get his Thyroid checked because children with DS are more prone to having Thyroid issues. He also had to have a CBC to check his blood count because children with DS are also more prone to Childhood Leukemia. That's why we had to have blood drawn today. The nurse called me the next day and told me that all of his labs look normal. HOORAY!!!!

We had lots of things to talk about at Colton's 1 year check-up, but things are going well. We will have a lot of appointments coming up in the next few months. Keep us in your prayers!


P.S.
Colton's been battling a cold for a week or so but at his checkup everything looked fine. I was worried about his cough because he was having coughing fits in the middle of the night so I took him to the doctor last night. His lungs sound just fine, but he does have an ear infection. This was him at the doctor last night....does that look like a sick kid to you?




My little trouble maker destroying that paper again...



We are currently on antibiotics for an ear infection in his right ear. Hoping that clears up soon. He's a pretty tough little guy.

First Birthday Party

We celebrated Colton's first birthday a week early in Santa Rosa Beach, Florida. Half of my family is from Florida, so we always meet near Destin the week after Christmas. My in-laws recently got a beach house in Florida, so they were down there, too. We decided to get all of the family together to celebrate Colton on December 30th at the beach house. The weather was a little cloudy and chilly that day, but we were still able to go out on the screened in porch and take a few pictures on the deck. Colton is not really into anything quite yet, so I didn't really know what to do about a theme. I decided that since we were at the beach, a Finding Dory party seemed appropriate. I'm not one to go all out for birthday parties....I like to make things easy. So...we ordered pizza and salad, grabbed a cupcake cake from Publix that came with a small smash cake, blew up some balloons, and printed off some pictures of Colton to hang from a piece of twine. I didn't get the best pictures of the decorations because of the light coming in the windows. Oh well!

Unfortunately, my usually happy baby was having a few tummy issues and wasn't in the best of spirits at his party. In fact, he cried a lot. It made me sad because that's just not like him. I had envisioned this perfect party where he was happy and laughing and was smashing his cake, but that didn't happen. He stuck his hand in the cake and it was covered in icing. Instead of licking his hand, he opened and closed it a few times and decided that he did NOT like the fact that it was dirty and he cried. Haha. But we made memories and that's all that matters! He had a lot of family around to celebrate him!

People who attended his party: (more for me to remember than for you guys)

Mom, Dad, and Weston (4)
MeeMee and Papa Jeff
Nana and Papa Gene
Aunt Katie, Uncle Mike, Tyler (5), & Tanner (3)
Cousin Matt, Stacy, and Harper (1)
Uncle Wayne, Aunt Dawn, & Aaron
Ms. Bonnie (Weston's teacher), Roger, Heather, & Bonnie Rose (7 months)
George & Connie

Here are a few pictures from the party...








Colton LOVES balloons! Seriously, his entire face lights up when he sees one.


He was SO mad I put that hat on his head!


Cousin Harper

















Never thought we'd be celebrating a January birthday at the beach. Not a bad place to have your 1st birthday. Only the best for Mr. Colton!

ONE.

My sweet Colton...you're ONE! I just can't believe it's been a year. As I think back about the day you were born, I am overwhelmed with so many emotions. This year seemed fast, but also slow. You've come so far and have changed so much. I've come so far and have changed so much. It's crazy what can happen in just one year. To me, it's more than just your first birthday. It's knowing that we've made it through all of the unknowns and challenges of the first year and we are doing okay. We survived! Things have fallen into place and we feel good about your school and your doctors and we are learning the ropes of raising a child with DS. Sure, there are going to be many more unknowns and challenges coming our way, but we have a great support system to help us navigate those things when necessary. We did it! I wrote you a poem and want to share pictures of your first year. Happy Birthday, Colton!

On the day that you were born
I wasn't surprised to see
That you had blonde hair
and big blue eyes like me.

But what I didn't know
Is that you would be rare
You are my precious diamond
No one can quite compare

You've already taught me so much
You were "special" from the start
And that smile that God gave you
Can warm the coldest heart

I'm thankful for you, Colton
I love to share our story
Thanks be to God
I give Him all the glory.















































We love you! Happy 1st Birthday, Pudge!