Revisting TOBI

And we're back! Cayden (who was the only one cultured 2 weeks back) still has a positive sputum culture for pseudo. Dr. Green said the results were super promising on eradicating given that the labs read "small amounts of" which meant we had made great progress in the past 28 days. However great of news it was, it still meant 28 MORE days of TOBI, 28 MORE days of oral Cipro.

Trinity and Cooper are both coughing now as well, which may mean another culture in the near future to make certain they also are not going pseudo. This would be Cooper's first positive culture for PA.

We are starting to get all geared up for Great Strides Season. This year's out with a bang event is what I'm calling "Dress to Impress: Gowns for CF" at the end of March.

Prom dresses and formal gowns in a variety or sizes and colors, each for only $10. All proceeds benefiting the Cystic Fibrosis Foundation. Can't wait to empty my closets!

Mary Kay makeup tips for the big night and free raffles.

Here is a just for fun, cute little craft idea for your little ones. I am thinking of doing a hand-print of each kiddo outlined in crayon. Happy St. Patrick's day!

The Not-So-Camping "Camping Party"

Sweet Colin turned 5 on January 20th. As is his tradition since his real "birth" day snow came our way and turned one celebration into two to accommodate all his out of town family. Of course my January baby boy would want to go camping of all things for his birthday. So we compromised on a camping theme. I totally turned into a pinterest junkie. All the clever camp themed birthday party ideas were there!


Decor: Nature and outdoors




Food:
Menu Kids in a Blanket, Campfire Flames, Bug Juice, and Sweet Treats for all the Happy Campers :)















Best Birthday Cupcake Cake I have ever seen! River's Edge took my theme of camping and ran with it quite literally. I was super impressed :)


The rest is just pure fun!








Dear Colin,
We may not get to spend as much time with you as we wish but you will always hold a special place in our hearts. You were the only little baby we got to have without worrying you might have CF. Even before we knew for certain, our hearts told us. You are a miracle. A blessing. You are funny, outgoing but sometimes still shy. You pose silly in pictures and you spell things goofy. You call trail mix, mail trix and only suck your thumb when you have your green 'b'.

All joking aside, I thought I was going to pass out when the nurse announced you weighed ten pounds. You were a big boy with a huge heart! God knew we needed someone just like you to fit the pieces together. You keep us "normal" when life is too tough.




Your blue eyes are the windows to your soul. I could look in them then just like I can now and know exactly how you are feeling.


We love you. We can't imagine life without you.
Love,
Mommy

Sigh.

The dates are marked on our calendar. In big blue letters.

February 3rd-Cayden done with TOBI
February 14th-Trinity done with TOBI

I love seeing the clear vials disappear from the fridge. It's always a big deal when a 6 year old exclaims. "No more TOBI, question mark. YES!"

In addition to inhaled TOBI, Dr. Green also treats pseudo with the oral antibiotic ciprofloxacin (cipro). The combination of antibiotics has shown in clinic studies to reduce the prevalence of PA in future cultures.

Here is a graph of an eradication procedure for early or recurring PA done in 2008. Colisin is another common nebulized drug used for the purpose of killing PA, but it is more common to start with TOBI.



I am such a CF geek. In fact, I know I am when I enjoy looking at charts like this.

Cayden was in a study as an infant using TOBI and a combination of Cipro (or placebo) in patients who grew PA before their first birthday. However we couldn't complete the study because Cayden's liver enzymes were too elevated to begin.

We're really hoping for good results on the 13th because, yes, we could get more use to an extra 2 hours in our day.

Next post will be most definitely an update, but Colin's out-of-this-world 5th birthday party will also be spotlighted. After all, he deserves his own post every now and then.