Friday was a long day. It all started weeks ago when Clare fell down the cement steps outside. Her head looked so bad that we took her to the ER and got a CT scan. No problems form the fall but her sinuses looked VERY bad. They sent us the the Ear Nose Thought Dr. The ENT Dr. scheduled an MRI and a Sweat Chloride Test.
Friday we arrived at the Hospital at 7:00 am for the MRI stayed for the SC test and finally got home just after noon. 4:15 pm we got the call we didn't want. Clare has Cystic Fibrosis. That was some of the toughest news I've ever received.
The good news is we've found it fairly early. There are great local Dr.s and treatments and they are making great strides in researching new treatments. Although we don't know much about Clare's type it doesn't appear to be extremely sever. She's still healthy, we found this because of a head injury. We can treat it and try to keep her healthy.
Life will change for us we won't find out how much until next week. (Which will probably be a long one.)
About Cystic Fibrosis (CF)
CF is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes germs to get stuck in the airways, which causes swelling and infections that lead to lung damage.
Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food and get important nutrients to help people grow and stay healthy. People with CF often need to replace these enzymes with medicine they take with their food, which helps them digest and get proper nutrition. For more info go to http://www.cff.org/
Life expectancy is 35 to 50 years. We're going to expect longer.
11 comments:
I am so sorry to hear about this trial for little Clare (and you guys). We'll keep you in our prayers. Good luck with your doctor appointment next week.
You're in our prayers. I am sure that sweet little girl has a spirit to match the task.
Good luck in this new spirit-stretching adventure. You will be great. (:
That is hard news, but I know you'll all be stronger because of it. Hang in there...my cousin's daughter has CF and there are lots of resources out there to help. We'll be thinking and praying for all of you.
oh wow, I am so sorry!
We've had lots of tumbles down stairs and I'm so glad nothing is wrong from that but I am so sorry you found this out.
Sorry to hear that, but so good that you were able to catch it early. You guys are in our prayers.
We are suddened by this news -- you are not alone. Have Faith & leave all to God -- He is able. Our thoughts and prayers go out to you all!
betty & Chris
Hey, we just hear last night about Clare. I tried to call you, I hope you got my message. I hope things are ok, and if there is anything we can do, please let us know.
On a lighter note, I saw your dad the other day at Inkleys, and he asked me how you were (funny, seeing as he's your dad). But it made me think that we never see each other any more. And now that we are home owners, and parents, we got to find cheap and easy things to do together. Seriously, lets hang out.
Davis Family,
I am so sorry to hear about this news of little Clare. One our of dear friends Jake, has CF and he has a much worse case. Jake is now, 36 and living a wonderful life with a wife and two little boys. Although he does have to go into the hosp. once a year for two weeks for a clean out, he is the most wonderful person who has not let the CF take over his life. I know that this will be a trial for you all, but please know that you are all in our thoughts and prayers.
Much love,
Roni and Dan
I am glad that you guys found this early. It will be nice that you have the family support and a cousin with CF. We will be praying for you guys and hopefully all the research going on will on day find a cure.
I'm so sorry to hear this news! We will be thinking of you/praying for you!
Chrysi, I am sorry for your beautiful Clare. I will pray for your family. I hope everything goes okay. Thank you for letting us know. We are thinking of you. We love ya!
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