Our old CF Commercial that plays on MCTV. Still working on this years.

Sunday, April 27, 2008

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

5 comments:

Lil' Chris' Mom said...

D, thanks for posting Daniel's story.

Daniel's Mom, thanks for sharing your story with everyone. I think you are a fantastic mom and a great cf mom role model for me :)
Thanks,
M

Auntie Steph said...

Hey M,
It sounds like you've made several CF mom friends. That's great! As I was reading about Daniel, I was confused about about the cross contamination.??? Could you explain why she said your boys will never be able to play together because of this.
Thanks,
Love, hugs, & kisses

Susanna said...

Dear M, I've been away from my comp. for several days, so it was great to get back and catch-up:) I really enjoyed reading Daniel's story. Because of Janna's 'failure to thrive' issues I'm especially interested in that part. When I read that he was 10lbs+ at birth... WOW!! that's awesome. Would she mind telling me (or just leaving it in a comment) how much he weighed at the six month diagnosis and then at 3 yrs after having the feeding tube for 2.5 years. Janna is getting close to 28 lbs and is 2.5 years old. Also it was awesome that Daniel being the youngest of four was the first to have CF!!

I want to say I've really enjoyed being able to have this little bit of insight and interaction with other CF moms.

If I mentioned this already, forgive me...but it's good news and worth repeating if I did:) Janna's cultures came back...and there is NO psudomonas!!! Yeah! For the first time in approx 11 months the throat culture was clear of that dreaded bacteria!! We are very very very thankful.

Well, the three children have surrounded me wanting lunch:) So I better go for now. They are as hungry as "GREEN LIONS", so I better take them seriously:))

~~ Susanna

Oma & Opa said...

It's good to read that you are meeting other moms who have children with CF. I can't help but wonder if the connections you are making is God's plan for you to do ministry and that is why you are where you are. How AWESOME is that? Tell Daniel's mom thank you for sharing her son's story with us. She said that there is no one, that they know of, on either side of the family with CF and I thought that's the same with Lil Chris. I wonder how many other families with a CF child have no idea where it came from?
Great job on raising so much money. Since none of us can share the walk together, know that I will be with you guys in thought and prayer. Give our lil man an extra hug & kiss for me.
lots of love, hugs & kisses,
mom

daniel's mom said...

Daniel's mom here. Susanna - M was right, Daniel was on the feeding tube for 6 months. It made a huge difference in getting his weight up, and getting his minerals and vitamins back in balance. He was around 12 lbs when he was admited to the hospital and part of that was water retention. Dnaiel was 34 lbs at his check up earlier this month. I found the hardest time to get him to gain weight was 1 year to 2 years of age. At 2, he finally got interested in food, and hasn't looked back! It sounds like your daughter's weight is doing great. Congrats on your daughter's clean culture. Daniel had psudomonas last winter, and it is such a relief when the culture is clean! M- your fundraising is going great! It is so neat that you have a company this is so supportive. Let me know how the walk goes. Two kids are in bed, now to get the 9 year old going!
Daniel's Mom