Keepin' It Real

I started this blog to share our journey and to inform people about Down Syndrome. But I also do it because it's therapeutic for me. It helps me to express my thoughts and feelings about having a child with Down Syndrome. Most days are good, really good. And I laugh and play and work with Colton...and he just melts my heart. But every few months or so, I have a day where I'm just defeated. I'm just tired....physically and emotionally. I don't want to have to worry about milestones or therapy sessions or how to motivate my child to do things. And I just have a long cry session...usually in the shower. Today is one of those days. I just want him to do what an 18 month old does. I just want to play with him and not have to feel guilty for not making him self-feed or hold his own juice cup or practice standing or strengthening his core. There are nights when I think back on our day together and I wonder if I did enough. Because I do have days when I don't do much "therapy" with him. I just let him be a kid and play like he wants to play; but then I get mad at myself because I do need to push him. Colton will not push himself. He's content just living how he's currently living. But I want more for him!

Another parent of a child with Special Needs recently said to me, "It's such a fine line we walk, pushing our boys to reach their potential but also accepting them just as they are." And it's so true. It's hard to find the right balance.

What is boils down to is that I just want the best for my child! I want him to be as normal as possible. I want him to walk and talk and play and have friends and learn and get a job and feel independent and loved and accepted. I want him to be the BEST! And he will be...but it just takes so much time and patience. I'm not only caring for my child and disciplining him and keeping him safe...I'm teaching him how to do EVERYTHING! And it's overwhelming and some days it just weighs heavy on my heart.

But tomorrow is a new day. And I'll be just fine. A good cry session is always good for the soul. I just need to focus on how far we've come...and not how far behind we are.

Now, excuse me while I go love on my little guy. Because nobody cuddles better than him, nobody kisses better than him, and nobody makes me feel more loved than him.

HE IS WORTH EVERY TEAR, EVERY HOUR OF LOST SLEEP...HE IS WORTH IT! AND HE IS MINE!




"Don't forget that you're human. It's okay to have a melt down. Just don't unpack and live there. Cry it out and then refocus on where you are headed."

18 Month Checkup

Friday morning, Colton had his 18 month checkup! He is still on the typical growth scale, so that's good news! His growth is starting to slow down, but she said that's normal for his age. Adults with Down Syndrome are usually pretty short, so I wasn't surprised to see that he was in a lower percentile for length. The biggest celebration for me is that his HEAD grew (1/4 inch)! Yay! Last time we went, his head hadn't grown and I had to go see a specialist. So, I just wanted to see some growth!
Here are his stats:

Weight: 23 lbs. 12 oz. (39th percentile)

Length: 31.5 inches (13th percentile)

Head: 18 1/4 inches (19th percentile)

It was a pretty easy checkup. Colton will stay on Zantac for his reflux. If he doesn't take it, I can tell that it starts to bother him, so I'm glad it does help. We are requesting a repeat Swallow Study to see if he has any improvement in swallowing liquids. Right now, I thicken all liquids to Stiff Honey. I know we won't be able to come off of thickeners completely, but it would be nice if we could just thicken to Honey or Nectar. His Speech Language Pathologist wants to come with me to the Swallow Study so that she can talk to the tech and ask questions that I wouldn't think to ask. If he still needs to thicken to Stiff Honey, then we are going to request an appointment with an ENT to see if there is something else going on with his throat other than the low muscle tone. Hopefully, the Swallow Study will happen at the end of August or early September.

Colton still only has 3 teeth (2 on bottom and one on top), but a few more are in the works right now. I'm SO ready for him to get some more teeth! I feel like he's been teething for months...and months...and months! Colton is a really great eater and will eat anything I feed him...but I have to feed it to him. I've tried to get him to pick things up and put them in his own mouth, but he just hasn't been interested. I finally decided that I had to find something that he REALLY wanted to eat. I went with something that I'd want to shove into my own mouth.....BROWNIES...and it worked!!!!!!!! HALLELUJAH!!!! I've never seen him so motivated to self-feed. Since then, he has fed himself pieces of grilled cheese and puffs. So we are making progress! And he can also hold his own cup! Yay! At least now I know that he can self-feed and hold his own cup if he wants to...he's just a mighty stubborn little dude, at times. Why feed yourself when mom will feed you if you make her wait long enough??? Hehehe.

Overall, his checkup went really well. I was very excited not to have a bunch of new doctors to go see. We will have our annual Genetics appointment soon and our repeat swallow study, but hopefully, that's it for a few months! Please continue to pray for Colton's heart. I pray that the holes in his heart close so that my sweet boy won't have to have open heart surgery in a few years. God, please close the holes in Colton's heart!!!

I just can't even begin to describe the love I have for this little boy. He is the sweetest, most loving, easy-going, happy baby! And I call him a baby because he is still very much a baby. The kisses, cuddles, and smiles that I get from him are the best! I feel like I'm looking into the eyes of an Angel when I'm with him. I never knew how happy this little boy was going to make me. Not a day goes by that I don't thank God for him. He melts my heart and is SO loved by my entire family. I'm thankful that God knew we needed him even before we knew it.

If you follow me on Instagram, you know that I post a lot of videos and pictures of him on a regular basis. If not, you're welcome to follow me @carriescott22. Here are a few pictures of my handsome little man taken in the last month...













In the last few months, Colton has really come alive. He has such a funny personality and has started actually playing with toys, rather then just throwing them. He especially loves playing with big brother's toys! He LOVES watching Mickey Mouse Clubhouse and will whip his head around to see the TV if he hears it first. He finally decided to start clapping....I'm not sure why it took so long but he decided he finally wanted to. He is army crawling all over my house and getting into trouble! I can tell that he's getting more body control, which is great! He loves emptying out my laundry basket and "helping" me with the laundry. He is starting to mimic more words. So far he's said ball, up, down, Mama, Dada, yeah, yay, bye bye, and more. The other day he even tried to mimic "brother." We are very proud of our little man!

Colton, we love you so much! Keep working hard!!!

18 Months!

18 months ago, the most precious soul joined our family.



Colton is the most easy-going baby. He's pretty much up for whatever we do as a family. When he was born, we were afraid we might be more limited in what we could do as a family because of his Special Needs, but we've quickly learned that is just not the case. We take Colton with us and let him experience everything Weston did as a baby. Colton is not afraid of water, he enjoys playing rough with daddy and brother, he is not startled by loud noises, and he's always up for new adventures. His latest adventure was this past weekend....



Oh, yes we did take that sweet boy tubing! And he absolutely LOVED it! I wish we could've zoomed in a little more on his face because he had the biggest smile! He also loves swimming and riding in the boat.



His prescription sunglasses are kinda my fav. They were expensive, but totally worth it. He owns more expensive sunglasses than I do!



At 18 months, Colton is still army crawling everywhere! He loves the fireplace and gives me the biggest smile when I tell him, "No!" His legs are getting stronger and he can pick us his feet to move them forward when I hold his hands to "walk." His legs are strong enough, but his mid-section is super loosey-goosey. The dude is like a noodle and he is just not stable when he "walks." His PT is ordering basically a unitard for him to wear under his clothes. It makes me laugh when I think about it. We are going to try to see if this will help him hold the middle together...much like spanks. We are anxiously awaiting for it to arrive. Haha. We aren't quite four-point crawling. I think Colton could do it...IF HE WANTED TO! He seriously fights not to do it. He can be SO strong and stubborn when he wants to be. Most days, he gives his PT a hard time. She works hard for the money....so hard for the money! He fights her during the hard stuff, and smiles at her during breaks. What a turkey!

Colton's new trick is to do, "Up, Down, Up Down, Up Down," with his arms. His daddy will say, "Up!" Colton slowly raises both arms up over his head, and as soon as daddy says, "Down!" he throws them down and smiles. It's so cute. They do it over and over and over. We don't have to show him how to play anymore...all we have to do is say the words and he knows the game. Sweet boy is learning! Speaking of words, his Speech Therapist and I think he's starting to say a few words. Last week, he said, "More." I've heard him say, "Ball," when we play ball. He can say, "Mama and Dada," but I can't be sure he associates them with meaning. My mother-in-law asked him if he wanted some juice the other day and she swears he said, "Yeah!" So it's good to see a few attempts at talking. Yay Colton!

We are still working on self-feeding. He can hold his own cup and squeeze pouch, if he wants to. He can pick up a piece of bread and put it in his mouth...but again, if he wants to! He's very capable when he's not being STUBBORN! I've been letting him help bring his spoon to his mouth and he's doing really well with that. He's throwing less food than before, so that's progress, too. He really will eat whatever I make for him...he's not picky! He can eat soft solids, which gives us a lot of options! He only has two bottom teeth and is starting to get one top tooth. So we are about to have 3 teeth! C'mon teeth! You're taking your sweet time!

Overall, Colton is doing really well. He is the busiest 1 year old I know! He goes to gymnastics on Mondays, therapy for 2 hours on Tuesday, therapy for 3 hours on Wednesday, therapy for 2 hours on Thursday, and he did an evening swim lesson in June. Colton will start full-time school soon. I really think it's the best thing for him. Early intervention is KEY in children with Down Syndrome. They usually plateau around age 12 or 13 (from what I hear), so it's so important for him to get help now! And Mama could use a break. Like seriously, I'm about to go to the doctor for my left wrist from carrying a 24 lb. weight everywhere I go...I've been in a lot of pain, lately. Most 18 month olds can walk, but I still have to carry him all of the time...but it won't be long. He WILL walk eventually.......and that day will be oh so exciting!!!!

Happy 1/2 birthday, Colton! We love you so very much!