When you find out your child has Down syndrome, you quickly learn about the conditions or disorders that are commonly associated with Down Syndrome...
Respiratory issues
Heart Defects
Hypothyroidism
Infections
Speech Difficulties (can be nonverbal)
Gum Disease and dental problems
Digestive problems
Epilepsy
Mental health and emotional problems (Anxiety/Depression/ADHD/Autism/Psychosis)
Childhood Leukemia
Celiac Disease
Dysphagia (Swallowing issues)
Hypotonia (Low Tone)
Sleep Apnea
Neck Issues (Atlantoaxial Instability)
Hearing Loss
Vision Problems
Blood disorders
Alzheimer's Disease
It's overwhelming and it's scary. Kids with Down syndrome go to the doctor A LOT for checkups with specialists. And then you still have the developmental delays that require PT, OT, and Speech and/or Feeding therapy. But just like all kids, they are all different and have their own unique strengths and weaknesses and challenges. I get really sad hearing about these little babies with Ds who are having surgery after surgery to try to fix their heart or who are in the hospital on a ventilator because they caught a common virus and their little body just couldn't quite fight it off. It makes me feel guilty that we never had to do that, but we don't take Colton's health for granted. I'm not sure why, but Colton has been blessed from the start. He didn't even have to go to the NICU. We left the hospital 2 days after he was born. Sure, Colton has had some of the above complications, but nothing life threatening.
Colton had an appointment this morning with his Geneticist. As I left the appointment, my eyes welled up with tears. Happy tears. Colton is doing really well. His blood cell counts came back normal (no leukemia), his thyroid levels were normal, and his test for Celiac Disease was negative. The holes in his heart are closing on their own. His sleep apnea score went from an 18 to a 5 after his Tonsillectomy. His swallowing has improved so our thickening has gone from Stiff Honey to Nectar. His tone is improving so much with therapy. He has passed all of his hearing tests and has had less than 5 ear infections in his life. He wears his glasses and it really helps his vision. Without them, his left eye turns in. He is able to communicate with us through signs and words. He struggles with chewing but he loves to eat and isn't picky. He can use a spoon and a fork and has improved tremendously in self feeding. On the Down syndrome scale, Colton is 75th percentile for weight and 48th percentile for height. Colton loves going to school and is very social. He loves to participate and sing songs and experience everything. He doesn't seem to have very many sensory issues at this time. Colton has 4 wonderful therapists and 3 teachers that pour into him daily, as well as family and friends. It takes a village, but Colton is making progress. It might be slow, but he's moving forward, and that's all that we ask of him.
Colton is currently working on:
Coloring
Imitating circles and crosses (with appropriate grasp)
Completing a 6 and 9 piece inset puzzle
Independently dressing and undressing
Stringing 4 beads
Replicating a 3 block design
Snipping paper
Using fork with minimal spillage
Sharing (especially with baby brother)
Catching a ball
Jumping down 4 inches with one hand assist
Jumping in place with both feet
Balancing on one foot
Pedaling a tricycle
Running
Going from sitting to standing without using hands
Underhand throwing
Walking sideways on a wide balance beam
Walking up and down stairs without handrail
Chewing crunchy foods
Following simple directions
Understanding language
Communicating through signs and words
Counting to 10
Learning Colors
Wow! That sounds like a lot! And this is why he goes to school full-time because I cannot possibly begin to teach all of that by myself. I'm SO thankful for the help he receives every single day. Colton has the best therapists and teachers and doctors. They have all been wonderful and want the best for Colton. He is such a lucky little boy. I have no regrets with Colton's care. We started as early as we possibly could and there's nothing more we could possibly be doing to help him. Colton has been given the best chance to live a successful and independent life. I pray that he continues to make progress and stay healthy. We don't know what the future holds for Colton's health, but right now, we are counting our blessings.
Thank you, God, for Colton. We are so blessed that he is a member of our family and that we were chosen to be his parents. Thank you for his health...we do not take it for granted. We ask that you please continue to bless Colton in the coming years.
"Your greatest contribution to the kingdom of God may not be something you do, but someone you raise." -Andy Stanley
"Give thanks in all circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18
