Monday, August 13, 2012

Summer Days

Thought I would sneak in to give a quick update on the kiddos...they are all doing so great!  Cayden has been on TOBI since our last clinic appt. three weeks ago.  His weight was finally up as well as his PFTs.  We are still waiting for news of prior authorization on the super fast nebulizer.  We are hoping we can have it before school starts.  Cayden will go back to the CF clinic in a few weeks to have his lung function checked when he is off the TOBI for just a few days.  That way the doctor can see him at his "best" before we cycle to the 28 days off.  Cayden is not growing PA (thankfully) but TOBI is the only thing that is keeping his allergies/asthmatic component at baseline.  We hate getting in the extra hours of treatments but it is totally worth it to see him at his best and happy!

Trinity and Cooper also received fabulous reviews minus Trinity's slowly ever inching weight gain. 

I hope you all are having wildly ridiculous fun summers.  We are finally getting outside again after near 110 plus degree days of heat and no rain here in the Midwest.  Getting a camping trip in this weekend AND a giving a thank you speech at our donor's for the Make-a-Wish trip golf fund raising on Saturday.  Can not wait for that.

Enjoy this pic of Trinity today doing her treatments.  It's not easy fighting CF but someone has to do it!


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