Sunday, February 6, 2011

The PDD-NOS life


Hi Everyone,

We created our site to share our experiences and found this awesome site. So thanks for allowing us to post and share our experiences. We are a family of five, our daughter is 5, middle son is 3 and then our youngest is 16 months. We are in SLC, UT. Our 3 year-old boy Cohen was diagnosed with PDD-NOS several months ago. This poor kid, he's been through the ringer. He's been to the hospital at least 8 times either for RSV or something else. His first 18 months he had reflux real bad. He's got asthma which makes a flu even worse, I suppose if we knew about his asthma we would have been able to stay out of the hospital. Our daughter also has asthma.

We started noticing signs early on but were a little hesitant to get him checked out, kind of a denial phase. We thought his hearing was lost because I could yell at him six inches from his ear and nothing would happened. Come to find out he had a lot of fluid built up and needed his tubes redone. This was done about a year ago. After having his tubes fixed and his abnoids taken out he was a changed boy. But he still didn't progress in talking. He was also a late walker which is the same with our youngest.

Throughout his life Cohen would not eat well. After his reflux he would live on milk. It was about six to eight months ago that he has started to eat better but we are still a ways from normal. The doctors said that he has a lot of sensory issues. So after several doctors appointments they diagnosed him with PDD-NOS. So we met with the school district and the Early Intervention program was able to start with him. His appointments were always pretty good but his progression was slow. If he were to learn a new word, there is know way he would repeat it later, which I guess is one of the symptoms of PDD-NOS, so although they were good it is always a little depressing.

We received the Tullips letter from a lady that my wife visited with about Cohen and that really hit home for us. Some days we are good with his condition and other days its rough. He is such a darling boy.

Well, there is a start to our life right now. We have a website called www.lifewithpdd-nos.com, check it out. Hope everyone enjoys the Super Bowl. I doubt the kids will let me watch it.


2 comments:

tiptoe mama said...

welcome! we're glad to have you here! - if it's any consolation, my kids didn't let me watch the super bowl either. not even the commercials!

Erin Hall said...

Hi! I am a rare commenter on here. But I read this blog everyday, it is a great soruce of strength. You will love it here!