I can't believe I haven't updated the blog since Christmas.....I'm so sorry!
Zoe was admitted in January for IV antibiotics. She did 3 weeks of them...and was still coughing. She then moved onto an oral antibiotic for 4 more weeks....she was finally cough free again! She has now caught a lovely upper chest infection causing a wet cough....so she is back on Omnicef and 5 days of Prednisone. Hopefully that combo will kick it before her clinic visit next week.
Our son, Austin got married last month to his fiancé of almost 2 years! He has a great job and they relocated to where his shop is...a few hours from us.
The kids are all still doing their Kung fu and CSW...they love it!! Alex is an orange belt and all 3 girls are yellow belts now!
We have had many visitors to the Ose House...and we love it!!
Zoe's Great Strides walk is next weekend....in lieu of it I am going to post a poem...from a CF parents perspective.
Some Thoughts From Us Parents of CF'ers.....
There are so many people that have no idea how lonely CF can be or how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake...watching your child struggle to stay above water and you have no idea how to swim!
We live everyday hoping for a cure. We live in fear that our child won't live long enough to experience it. We watch our kids take pill after pill and medication after medication everyday. We do breathing treatments and chest physiotherapy several times a day, taking almost 3 hours. We give our child 15 different medications each day...and that's when they are well. When they are sick they are in the hospital for 2-3 weeks on IV antibiotics. We watch our child scream as they get held down, poked and prodded by the staff. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that takes over their lungs. It makes them work so much harder to breathe. It makes their lives shorter. Our children have an over abundance of mucus in their bodies, it also overtakes their systems. Some of our children cannot run around all day because they get out of breath easily.
Even though our children are so sick, they always seem to smile even at the hardest times. They are tough.
We listen to the comments from people that think our children "look" healthy, therefore, they must be fine. But yet, their lives are withering away right before our eyes. We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious.
We stay awake all hours of the night listening to our children cough so hard that they can't even get a breath in between spasms. We stay in the hospital holding them, waiting for them to get better, hoping that they aren't too weak to fight.
We live in fear because we know one day our children will get sick and not get better. We pray it won't be this time.
We watch families we know lose their children to this battle. We pray everyday that we never have to go through that pain, that we won't have to hold our child until they take their last breath.
We hold onto hope even when things seem impossible. We sometimes feel useless. We fight everyday, with our children, right by our sides, in the hopes that we will not lose this battle.
We keep fighting for our children. We stay strong for them.
We are the parents of a child with Cystic Fibrosis.
Take care of you and yours....
Jada
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Hyperion - a CF Film
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