A Fun, New Mealtime Game

Hamburger

Tator Tots

Brown Beans... makes for a beautiful and delicious meal.

C-diff

Yep, Madi has it. We're working the alphabet. CF, CDiff, now we need something that's CE___. All joking aside, it's a toxin in her intestines that decided to become a pest. She has been on Cipro (antibiotic) for over a week and has had yucky diapers. I meantioned it to the pediatrician at her one year visit (thank goodness I did) and he said we better do a stool sample for C-diff. (click here for more info). I remember working in the hospital during college and took care of people who contracted it while in there for something else. It happens when you're on antibiotics for awhile or if it's a strong abx like Cipro and it kills the good bacteria in your intestines. Now there's nothing there to fight the C-diff toxin that kind of hangs out in our bodies. She feels fine, just bad diapes. She's off the Cipro and on different abx now to get rid of the C-diff. Hopefully it will take care of it and it won't be an issue. C-diff can be really hard to get rid of so let's pray that this round of abx will blast it away!!!

Happy Birthday, Madi!

Sorry, I don't have anymore photos right now of her birthday! My camera stinks so I relied on others to take pics. These are from auntie Katy. I also have some from my mom but left them at work- argh. The party was last Sat. at Aunt Bev's house. It was a cupcake theme, if you couldn't tell. Cupcake-shaped cookies, cupcakes, cupcake outfit, cupcake decorations. It was fun and Madi did get a little overwhelmed by all of people but overall did great! I love you, big girl :)

Ratrace.

What a ratrace! Madi had a not-so-good sputum culture. She has these done every time she goes to the U for a checkup or procedure. She grew a couple icky bacterium (is that the plural of bacteria? bacterii maybe?) in her lungs so she is on two new antibiotics. Cipro and Tobi. The Cipro is taken orally and the Tobi is a nebulizer med that she takes twice daily. Anyways...the Tobi is a copay of $250.00 - yes, that's right, a copay. That means it costs us $250.00 AFTER our insurance pays its part. I also had to refill her Pulmozyme neb med today which is another $200.00 per month AFTER insurance. Yikes. Thank God that we were accepted for $5,000 a year in copay assistance from the Patient Access Network Foundation. Thank God for this wonderful non-profit group. Well this isn't the subject of my post but rather a precurser for my evening. The Walgreens that we get her Pulmozyme at doesn't carry Cipro or Tobi. The other Walgreens, a few miles out of the way, does carry it. I also had to get my medication refilled at Target pharmacy. So on my way home in 10 mph traffic I drove to three pharmacies to get 4 meds. Thus, the ratrace. Okay, so it's not a huge deal but it seemed like it after a long day of work away from my sweet girl.

The Vest

It came today! Our wait for Madeline's airway clearance vest is over. Someone besides Curt or me can do her treatment. Curt and I can be away from our daughter for more than 12 hours, not having to worry about getting back in time for her treatment. We no longer have to hold her down on our laps beating on her chest and back. Now the vest does all of that for us. Thank God for this invention. Thank God for allowing our daughter to be independent of a caregiver when she's old enough to run The Vest.
Madi did so well. She didn't cry one bit. She sat for 1/2 of the treatment just listening to herself "talk" with a really vibratory voice! It was so strange not pounding on her - knowing that when the machine shut off, she was done. Now we've entered a new stage of Madi's CF life. A stage that gives her independence and self-confidence.

PFT results

She passed! Okay, it's not a test like that, but Madi's lungs look normal. Thank goodness for that! She's now sleeping and probably will be for a while as she was under some anesthesia. We ordered her "vest" today and it will be here on Wednesday or Thursday. This will take the place of the twice-daily "poundings" that we do on her. She wears it (it's connected to a big air compressor) for 30 mns. twice a day while using her nebulizer. Click here for a video of how the vest works. Thanks, everyone, for your thoughts and prayers!

Prayer Request...

I have to ask for everyone's prayers and thoughts for Monday, Jan 5th. Madeline has her infant PFT test. She has this pulmonary function test every 6 months, and will for the rest of her life...or until they find a cure for CF! Since she's too little to follow commands she has to be sedated and placed in an aquarium-like contraption for the test. A vest is put around her body that literally squeezes the air in and out of her lungs. This test can measure how well she is moving air, basically. To see a video of the test (the video's about 4 mns) click HERE and then click on the tab on the left that says "Watch an infant study". It looks a little scary but it's not that bad. The hard part is the prep for the test. In order for the mild sedative to work, the child must fall asleep on her own. So, we have to keep her up late the night before and get her up early the day of the test. Not easy! And, since she's being sedated, she's not allowed any food 6 hours before the test. Again, not easy. The test is at Fairview University Hospital which is about an hour from our house. Madi loves to sleep in the car so one of us has to sit in back with her to keep her awake for the trip. Oh, boy I wonder who will get that job? Well, I am tired now and want to go to bed. I'll be up at the crack of dawn to get my daughter up. She is not going to be a happy camper tomorrow. So our prayer request is this...Keep us strong as parents to do the right thing for our daughter no matter how hard, and for the test to show that Madi's lungs are functioning normally. Thanks.