Thursday, January 14, 2010

Just Because

I decided to upload a few new pictures just because it's been awhile.

Here's Ana thinking that she has a strange Mommy :)


Luke playing at his appointment on Tuesday and yes, I cleaned the entire thing with a disinfectant wipe before I let him touch it :)



We have been dealing with icky noses lately and this is just one of the many times that I needed to wipe Luke Man's nose.










5 comments:

Sharon said...

Hi,

My name is Sharon Ray and I am the assistant editor of Cysticfibrosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Cysticfibrosis.net offer a free informational resource to both the general and professional public on this terrible disease.

I hope you show some interest in building relationship, please contact me at sharon.cysticfibrosis.net@gmail.com.

ADawn1114 said...

Hi! I read you blog some time ago when my son was going through testing for CF. Here is our story:


"We were called by my son's pediatrician when he was one week old to tell us that his newborn screening test had come back with two mutations for CF. Of course, at the time, we had no clue what this meant. After doing some research, and being scared out of our minds we knew a little more about the subject. The Dr. told us not to worry because many of the newborn tests come back with false positives, and at that time he scheduled my new baby for a sweat test. It all seemed surreal since we had never heard of this disease, no one in our family had it and the odds seemed so small. Long story short, his sweat test came back a 7. Of course I got on this website and was reading how many times there can be a false negative.

My husband and I met with a genetic couselor that explained more to us. They thought he was "perfectly fine" (he had no signs or symptoms still), but they didn't know why. They thought that one of us had possibly passed down two mutations to him. At that point, they drew both of our blood to do the genetic testing. We didn't hear back for a long time, so I finally called the doctor. They told me that I hadn't received a call back because it came back that both my husband and I were carriers and they just didn't know what to tell us. They said that they had never had a negative sweat test where both parents came back carriers (and we had both passed our mutation to him).

They told us to just keep an eye on him for any of the symptoms to appear. For months, I was scared to death that a symptom may appear. I constantly would wipe him down if a stranger touched him and I didn't want other people holding him. I was a very paranoid Momma!! haha

When Caleb was 10 months old we got a call from our genetics doctor out of the blue. She explained that she and another doctor had researched the two mutations that we had passed down to Caleb. My husband had passed down the DeltaF508 and I had passed him a very rare mutation, F508C. The research concluded that the F508C mutation is a benign mutation. Meaning that it cannot react with another mutation to cause CF. The only thing that this combination of mutations had ever produced was a possible infertility in males. After doing a little more research on my own, I found that there are I think 5 or 6 mutations that are benign. That is not very many, but they are out there."

I am amazed at the faith you continue to have. I am a strong Christian and my husband works for a church full time. I felt so vulnerable and weak while we were going through all the testing. Thanks you for sharing your life and story to raise awareness for CF. I continue to be amazed at the lack of knowledge the doctors have in regards to CF. Our family also has a blog.

www.boggessbunch.blogspot.com

Thank you for sharing!

Allison

CFMama said...

Hi!
Just stumbled upon your blog. A fellow CF mommy here. Your family is beautiful and I am going to follow your journey with CF.

rfrancese said...

Hello Courtnie,

We are a communications company and healthcare is one area in which we work - we are compiling a list of influencers in certain therapeutic categories whom we might reach out to in the future to talk about their condition and found your writing to be insightful. Would it be ok if we added your name to our list? If so, can you please send me your full name, and the best way to contact you if this email is not ideal.

Thanks and let me know if you have any questions. Keep up the great blogging!

Regards,

-- Renée

Renée Francese
rfrancese@pulsepointgroup.com
Austin512.457.8448

S E Foster said...

Hi,

I was just scrolling through blogs and came across yours, it was the heading that caught my attention with those powerful thought provoking words that really make you think about life! I just wanted to wish you all the luck in the world and say what a beautiful little boy you have. I dread the thought of my little girl ever being seriously ill and can only imagine what you are going through.