The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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8 Months and Already AMAZING!!!
8 Months and Already AMAZING!!!

Colton was born October 27th 2013 at 35.6 weeks at 8lbs 6.7 ounces & Hypotonic. We found out our sweet boy has Down syndrome, Trisomy 21. Colton spent almost a month in the NICU before he was transferred to Knoxville Children's hospital where he underwent a heart surgery, a stomach tie surgery(Fundo) , & a Endo Vive G-Tube surgery. Still has a small hole in his ASD. After about a month there, we were able to take Colton home to see big brother Gage, the Friday before Christmas. We had therapies & tons of appointments. In the beginning of January we had to take Colton to the Niswonger Johnson City Children's Hospital. Colton was fighting a MRSA Staph Pneumonia in the PICU. When we returned home we had more medical equipment in addition to what we already had ( feeding pump,i.v. pole, medication, supplies, etc) We had oxygen, oxygen tanks, Breathing treatment machine, etc. After a little under two weeks at home, Colton was sent back to Niswonger Johnson city children's hospital. He was taken to the PICU again & had a Broncoscopy done, we found out he had horrible pneumonia. He was then put on a ventilator & a Broviac Central Line was put in his groin. We were given "the talk" because Colton was so extremely sick. After battling the illness and he was taken off of the ventilator we had gotten more news. He had a blood clot in his leg. It was treated and he is on blood thinners. Colton started having seizures and we can't figure out why he is having them. He is now on a lot of medications for so many different things. Colton had to have a blood transfusion of 50 ML, has trachea malacia, damage done to his lungs, etc. We agreed with the doctors that Colton needed a tracheostomy. Colton then went for 3 emergency surgeries within 24 hours for different traches, they all kept slipping & laying under the skin, cause his tissue is so soft. He ended up getting subscurant emphysema and other lung issues because of it. He was on the ventilator, again for a few more days. Colton now has a 4.0 Shiley pediatric trache in and we pray this one will do well for him. He is still at risk of it slipping. The doctor had only seen it happen two times in 20 years and they never had to have it more than once. We know God won't give us more than we can handle! Colton is so extremely strong and has fought since the day he was born! Colton gets 24 hour nursing and they are amazing! We are so thankful to have them! We are blessed in millions of ways and thank God daily! Colton is no longer having seizures, his broviac central line was taken out, and he is getting stronger ever day! He gets occupational therapy twice a week, physical therapy twice a week, & speech therapy once a week. He's a very busy boy! Plus all of the appointments, etc. We are praying that everyone in the world will know about Colton. What a strong baby boy he is and all that he has been through. He has changed not only our lives but so many others as well. Colton having Down Syndrome was a shock to us but we wouldn't change anything in the world. We are blessed that God gave us Colton just the way he is... So everyone, Please share Colton's story/page to all you know! Let's spread Down Syndrome Awareness! Colton will continue to fight! Colton is a blessing!




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reattia Francis , United States, OH
7/1/2014 8:39:08 AM
Very too story :) <3

reattia Francis , United States, OH
7/1/2014 8:37:09 AM
Very good sorry:)

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