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Thursday, March 10, 2011

Clinic visit

In the middle of all the craziness, we were able to fit in a clinic visit (as if it’s an option).

However, we couldn’t have asked for a better day. Ben did great on the hour and a half ride down, pushed his cars around on the patient table, and waved good bye to everyone as we left.

He is a little over 33 lbs which keeps him above the 90th percentile and is half an inch below 3 feet which is just above the 80th percentile. Of course, with numbers like that I have no room to complain and I did a little happy dance on our way to the room. I can’t take all the credit though, Ben is a physical clone of his father at the same age.

Ben’s lungs sounded crystal clear and he was also able to demonstrate how he can cough on his own for our NP. He is such a stud.

We made a few changes to Ben’s regiment. We upped his enzymes from 3 Creon 12’s to 4 Creon 12’s and if you’re at all familiar with CF or you read this blog, you’ll know the reason why. I don’t need to go into gory details.

We were going to start our second month of Tobi for treatment of his pseudomonas but I decided to switch him to Cayston for the last month. Cayston is a fairly new inhaled med that also treats pseudomonas. If Ben had continued to culture pseudo after our IV treatment of it (August ‘10), he would have been started on Cayston.

I’ve done some research on it the last couple weeks and have heard nothing but positive things so Dr.N agreed that it was a good idea to start. We also did 6 months on/off of Tobi last year and never kicked pseudo so I think it’s time to make a change. We’ll have a couple days break before our new prescription arrives.

TOMORROW Ben turns two. Maybe he’ll start holding his own nebs now.



  1. Wow, he is getting so big, Margaux! You are doing such a great job! Happy birthday to Ben :)

  2. Fantastic clinic visit!! Well done to you all :)
    I've also heard nothing but good about cayston so will be watching your blog for updates, I hope it works for Ben!

    AND technically it is Friday 11th here in England so Happy BIrthday Ben!!! Have an awesome day little man.


  3. Wow...his weight and height are AWESOME!! So happy that you had a good clinic. Always a good feeling. Hugs!

  4. WOW- Great news for the 90th percentile for weight! We looks so BIG in the picture now. Little man is clearly growing up. So happy for all of you on a great clinic visit!

  5. Can't stress enough on how much I love reading my wife's blogs. Keep up the good work babe!

    GO BEN!!


  6. You might be interested in this so he can have his hands free during treatments.


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