Daniel's Story

Daniel's Mom just sent us a comment with his story & I thought instead of publishing the comment I'd turn it into a post so everyone will read it. Just so you know, I modified it a little bit to protect their privacy.

Thanks so much for sharing this story with us Daniel's Mom & I hope you'll keep us updated on the blog with his progress!

Hi M,

I would be happy to share Daniel's story, but writing is not my strong point so bear with me. Daniel, who will be 3 in July, is the youngest of four children. We also have J (13), S (9) and K (7). With all of my pregnancies, my husband and I opted not to have any prenatal testing done. Even though the doctors pushed it when I was pregnant with Daniel (I was the ripe old age of 39), we didn't feel the need. Daniel was born at 10lbs 9 oz. Absolutely beautiful. At two weeks of age, Daniel started throwing up all the time. I had nursed three other children, and I knew the difference between spitting up and vomiting. Thus began 6 months of weekly weight checks and two pediatric gastroenterologists (one tried to convince me that it wasn't Daniel throwing up that was causing the weight issues it was my faulty breast milk!). Besides throwing up, Daniel had diarrhea, wheezing, a diaper rash that wouldn't go away and generally not looking well. I cannot tell you how many tears I shed wondering if anyone was going to figure out what was wrong. On 1/16/06, when Daniel was almost 6 months old, I took him to the doctor's for his wheezing and weekly weight check. Daniel had lost an entire pound in one week and looked like he was retaining water in his legs. The doctor said he thought Daniel might have Cystic Fibrosis, and needed to be admitted to the Children's Hospital. We spent 15 days in the hospital where the diagnosis was confirmed. Due to the CF, Daniel is pancreatic insufficient which meant that all the nursing he had been dong for 6 months went right through him. At the time of diagnosis, Daniel was very malnourished and his vitamin and mineral levels were a mess. When we left, Daniel had 4 new medications to take everyday, a feeding tube, breathing treatments and we learned cpt. For us the diagnosis was a relief. We had worried so long and now we had a treatment plan in hand - we could be proactive. In case you are wondering, there is not a history of CF on either side of our families. Fast-forward, Daniel will be 3 in July and is doing great. Dealing with CF has pretty much become the norm in our house. Every day he does 3 breathing treatments, 1 hour on his vest, takes 2 vitamins, 1 Prevacid and 2 enzymes every time he eats. He is a champ about it! M and I were able to meet when our CF Clinic asked me if I would talk to a new Mom about CF. I jumped at the opportunity to help. I could not imagine being a new mom and having a baby with CF, and hoped I could offer some support. The connection has also been great for me. When M and I talked on the phone the other day, and I was talking about Daniel's cultures. I didn't need to explain my frustration that Daniel was growing new bacteria , M knows and understands. The only sad part is that because of cross-contamination, our boys will not be able to play together. I think I having taking up enough of lil Chris' blog, if you got this far, thanks for reading Daniel's story.

Daniel's Mom