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!