Where do I start. I hate this disease! I hate everything about the letters C, a wimpy curved letter that can't even stand up straight. F , this letter is the wickest of all....the beginning letter for so many slander and foul words. Put them together and they represent the crappiest, most unfair abbreviation in the human language. CF, cystic fibrosis. It should read"a disease that robs you of all your closest most amazing warriors"in the dictonary. This disease has a way to sneak up on you and rip all your confidence and self love away from you in one cough. Now I have just learned of the passing of a great, amazing, words can't describe , friend and fellow cf warrior. Jason Barry. First Kyle York ,and now Jason. Two , young and caring gentlemen in the true meaning of the word. Gone. Just taken away from those who love them the most. No warning. Just gone. Two jokesters in heaven trying to convince God that cf should be a spoken word of the past.
I hate the fact that these two guys while never be around to play practical jokes on the nurses of St. Mike's ever again. No more fake g-tubes or bed pans on their heads. No more IV pole skating and smiles that warm your heart. And why does this effect the cf world. Because it is unfair to take warriors from our defense! I didn't know these guys like their families did, but I tell you I still cry just the same, because today just a little of my hope for the future has been robbed from us all. CYSTIC FIBROSIS SUCKS! CYSTIC FIBROSIS SUCKS! CYSTIC FIBROSIS SUCKS! I HATE IT, I HATE IT , I HATE IT!
Sunday, October 04, 2009
Ok so now me....lol. ME, Me, Me.....lol! Well for those who don't know, I had my lower large colon and bowel removed back in February. Ouch! So I am now pooping like I should, and no longer in pain. This means no pain medications! But this has allowed my body to balance out and now I have to take enzymes to digest fats, so the good and bad of things. I am slowly getting back my energy. I still have bad days, but the good and the bad are starting to balance out now.
It seems like forever since I posted here, and when I look at the date.....its pretty close to forever! Well to update everyone. Annika has managed to stay out of the hospital for a full year, her last admission was September of 2008. At that time she had her IV port removed because it kept giving her an infection in her blood. So regular needles for my little one now.
She is not to impressed about that one, but glad that she no longer has to have a port flush once a month. Her G tube has now shrunk down to a 1.5 from a 2, so the scar tissue has thined and settled. It has created a leak proof seal, which is a bonus! Annika has been put on peptamin 1.5- 3 cans a night, and a antihistimine to increase her appetite. All these things have made a difference. She is now 39"tall and weighs 35 lbs. For once in her life she is above the 25 th percentile for both height and weight! She rocks. We are so proud of her! She is a great kid, so compliant with her treatments and cf clinics. We put her on hyper tonic saline, and man does she ever cough up that yucky mucus. Hate to think that use to sit in her lungs! Annika has started school this fall, and she actually isn't the smallest one! YEAH! She loves school. And we love her!