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!

God Is Good

God Is Good!

Our card this year says it all. 2016 has been quite the year for our family. In fact, 2016 has been the HARDEST year of my life. There's been lots of surprises, lots of research, lots of appointments, lots of decisions to make, lots of learning curves, lots of tears, lots of smiles, lots of life changes, lots of patience...and a whole lot of what I call "Adulting." It's been stressful and tiring. Needless to say, I'm happy to say goodbye to 2016 and to bring on a New Year! But just because this year has been HARD, doesn't mean that it has been BAD. Looking back, God has blessed us in many ways this year. If I had to choose the biggest blessing, it would have to be...Colton's health. When you research DS, you see that most babies are born with major heart defects that require surgery. Some babies have digestive issues that require surgery. The narrow nasal passages and ear canals cause fluid to back up, resulting in chronic ear infections and/or pneumonia/RSV. In Colton's first year of life, he never went to the NICU, he's never been hospitalized, he's never had surgery, and he's never even been on an antibiotic. The only thing he's needed is Reflux medicine. He's had a few colds, but he's been able to get over them on his own. He has been a picture of health. I'm not saying that will always be the case...I'm probably jinxing it right now. But I'm SO very thankful for his health this first year. I can't imagine doing what all we've done this year with a sick baby who's in and out of the hospital. There are a lot of families out there that have had to do that...and it breaks my heart for them. Thank you, God, for Colton's health. We realize what a blessing that is this year.

This year, I've had moments of weakness when I've said, "2016 has been the WORST year of my life!" But that's not true. That's just my stressed and tired self talking. I can't say that it's been the WORST because...2016 gave me Colton. My happy, sweet, beautiful baby Colton. I'm so excited that he's here to enjoy Christmas with us this year. He's one of my greatest gifts. When I see this picture, my heart just melts. Everything that I've done for him this year, I'd do again in a heartbeat. He is totally worth it! He completes our family!



Our family would like to wish you a Merry Christmas and a Happy New Year! Thank you for following our journey this year. Thank you for caring about our Colton. Thank you for wanting to learn more about Down Syndrome. Your love, support, and comments mean so much to us. We hope you will continue to follow our journey in 2017.

Peace out 2016! We're ready to make fun memories as a family of 4!



"Every good and perfect gift comes from above." James 1:17.

"Give thanks to the Lord, for He is good. His love endures forever." Psalm 136:1

Feeding Therapy

Two weeks ago, Colton started his Feeding Therapy. He goes twice a week for 30 minutes. Our first goal is to get Colton to drink from a straw cup. The best cup to start with is the Honey Bear straw cup.



The good thing about this cup is that you can squeeze it to push the liquid up the straw to help the baby get started. We let Colton taste the liquid and then squeeze his cheeks to encourage him to suck on the straw. By squeezing the liquid up the straw, he doesn't have to suck as hard to drink since his liquids are thickened to Stiff Honey. However, Colton does have a really strong suck and at his second feeding session, he was able to drink from the cup without us having to start it for him. Hooray!! Now, we do have to squeeze his cheeks to get him to start drinking from the straw, but he'll get there soon enough. We only need to use this straw cup to help him learn to drink from a straw, but we can transition to another straw cup as soon as he gets the hang of it.



Colton will only take a few sucks and then he stops. He doesn't drink a whole lot yet. We really need him to start drinking more so that we can start weening off of bottles. It may take us longer for that transition than it would for a typical baby. He also needs to start eating more solid foods so that he gets enough nutrition. Right now, he's mainly eating purees with some oatmeal or rice cereal.

Colton uses his tongue to suck like he would a bottle, which is normal for all babies. However, we want to transition him to sucking with his lips. We want his tongue to stay in his mouth, moving side to side. His therapist will put a puff in his cheek to see if he can find it with his tongue. Sometimes he does and sometimes he loses it. She will then reach in and move the puff so that he can feel it in his mouth. Colton still has a pretty sensitive Gag Reflex, but hopefully he'll get over that soon when he starts to get used to more solid food. She recommended using a carrot stick in his mouth because it would be pretty hard for him to get a bite off of it without any teeth (Yes, we still don't have ANY TEETH!!!!!). She let him explore with one today and would brush it along the outside of his gums. This should help with his gag reflex, as well as his tongue movement. We want his tongue to find the carrot stick so he can practice moving his tongue around in his mouth.

A common myth about children with DS is that their tongues are too big for their mouth...hence, the tongue thrusting and tongue hanging out of the mouth. That is not true. Babies are not born with their tongues hanging out of their mouth. It all has to do with low tone in the tongue and face. Aspirating and reflux can also happen because of low tone. We want Colton's tongue and face muscles to stay strong, along with his throat muscles. We're hoping that as his throat muscles strengthen, he'll stop aspirating so we don't have to thicken liquids anymore. We also want his tongue to stay strong for Speech.

At therapy, Colton practices eating different solids like Puffs, Graham crackers, or Mum Mum crackers. He gags pretty often, which makes me nervous, but his therapist is good about resetting his gag reflex by pushing his chin to his chest. He also practices eating from a spoon with different purees...some are cold or just room temperature. By using cold foods, he can feel it more inside of his mouth, enhancing the learning experience.



At the end of each session, she massages his cheeks and lips (she calls it stretching them out). He doesn't seem to mind it.



As we transition from bottles to cups and solids, I find myself anxious. I was comfortable with thickening formula and feeding Colton purees. Change is hard, especially when a learning curve is involved. Most babies just naturally transition, but with Colton, it's more difficult. I can't just give him milk or juice because it has to be thickened. I can't even give him Tylenol without adding it to food or a bottle because he can aspirate on it (which has happened and it scared me to death!). I just have to remind myself to be patient...he'll get there. He will learn to eat and swallow and eventually we won't have to thicken his liquids anymore. I'm thankful that I have a Feeding Therapist to help me.