For the past 4 1/2 years we've been getting free enzymes. The enzymes were provided by the manifactures as one of thier "programs" to help familys w/ newly diagnosed cf patients. Actually the enzymes are only free up to 3 or 4 years of age but our Rx was written for a little more than what she was using (I chose not to correct that w/ the doctors...that turned out to be a great decision). After years of having a little extra enzymes, I had a stock pile of them in the cubard.We've been working on the stock pile for about a year, saving us thousands of dollars..litterly!(You have to carefully manage your stock pile of any med. cause of the expiration dates) So now we have about 2/3 weeks left in the stock pile and we had to order our first month of enzymes that we will have to pay for.
Now we have been fully aware of how much enzymes cost...but now that we are staring down a $516.00 co-pay every month, for ever... Part of the reason Shane started his own business was because we knew we would have this enormus co-pay. I always thought we were lucky to have insurance for Chehayla. She was born just b4 they started infant screening for CF, so we got insurance for her b4 she was diagnosed. But time like these it seems like it would be better to be on some state program. We are stuck in the middle of having too much income to qualify for programs that would pick up cost like these, and not enough to just pay & move on. But who really has "disposable income" these days. Of course we are not just going to "bend over & take it". Ive been researching programs for years now, hoping that by now there would have been some changs in they way the programs for CF meds are run. Yeah Right! The only place to get any discount is from the manafacture.
The new enzyme is called Zenpep. The designed this enzyme to work better than the previous brands, so it is possible that she may not need as many as she currently takes. (About 310 a month. ) That's something to look forward to, but we need to get the first month to expirament w/ the dosage. Ive also ordered the paper work to aply for Zenpep's assistance program. They will evaluate weather after thier $50.00 reimbersmant, our co-pay is still unreasonable...UH DUH!
So just how much are enzymes? Zenpep is $273.00 for one hundred pills. Hayla takes 2 w/ every meal or snack. That comes to 310 per month (give or take). $273.00 x 3.1= $846.3. Divide that by 1/2 cause her insurane is 50/50 for Rxs = $423.per month. Her doctors over wrote her Rx only by 2 pill per day. And Im only estimating that she uses 10 per day sometimes more sometimes less. Now that we are paying we will definatly not be so carefree w/ them!
All Im saying is that it's rediculis. There are programs that cover med.s that treat the cause of CF(lung medications like pulmazyme, ect.). But the whole malnutrition thing is a secondary effect of CF. I hate to complain too much cause I know in my heart that we are luky..things could be worse. We've had all the real big cost covered so far (pulmazyme/ hostital stays). And most of all she doing great.
Quote of the Day #3
Ok we have pictures of Aden!
He is working on a frog stroke (Terri knows what its called). She is telling him.."chicken, airplane, soldier".
As you can see his butt is heavy! He's much better at swimming on his stomach. They have been swimming in the deep end, and he does fine.
Talon's great at swimming on her back. She can go back & forth w/out stoping (on her back).
OMG...she actually smiled for the camera!!!
"...steady.."
"...YEAH!!!.."
So all the kids are taking a whole month of swim lessons at the new Kroc Center. ("thank you pappy"). This is inside the "leisure pool" area. This is one of many community centers donated by Joan & Ray Kroc. They were built in many differant states. Salem was lucky enough to get one too.
Hayla is in pre-2; working on floats & bobs.
Talon is in level 4. Working on....Iforget the strokes (backstrokes & ?)...but she personaly is working on holding her breath longer. They swim the lenghth of the pool back & forth. (olympic size). There is only one other girl in her class so she gets lots of 1 on 1. Her & Hayla have the same teacher. Some how there were no picts of Aden taken : ( 
This was day one. Her floating was a little off. Shes got it down now.
Aden was suddenly sticken blind by the sun when I wanted to take a picture. And of course I refrused to take a goofy looking picture of him.
before before...before I brushed my hair; before I cut my hair. Even farther back before I found out about "beauitful lengths" that's how long my hair WAS (by Talon)
It has to be at least 8 inches.Thats way she waited 3 years. 3years of measuring & waiting with a sweaty neck!
AAAAAAHHHH!
Good by old hair......
...good by sweaty neck.
Is it actually possible.....she looks older!!! This cut will be great for swim lessons,they start 2marrow.
