Wednesday, October 28, 2009

CF Clinic

Had another visit to our CF clinic this morning.

Everyone commented on how big he was! It has been awhile since we've been in the actual clinic. Our docs allowed his PFT at six months to be "counted" as a visit, so it's been several months since the nurses have seen us. One nurse (who has always helped us) couldn't stop staring at him and commenting that he's turned into a little boy!

He is just under 29 inches "tall" and weighed about 19 pounds...let's just say they weren't thrilled with his weight. We briefly talked about adding another medication to help his enzymes work more effectively, but Casey and I think that's it's partially due to him being sick (and teething) for the last couple of weeks. He just started eating normally (aka eating us out of house & home) again Sunday/Monday, so we're gonna head back in a month and see if his weight has increased enough. If not, we'll discuss adding another medication, but I won't even get into it until we for sure need to add it. They also think that it might be because he has grown so "tall" so quickly, that his weight can't keep we'll keep you updated!

They were thrilled about how his lungs sounded (clear!) and his height. And they all laughed when he did "so big," clapped for himself & waved...the funniest was when one of the nurses came into to collect his she said it, "I'm here to get pee! Yay!" and Gavin started clapping, what a goon!

He also got his first dose of the H1N1 vaccine, he'll get his second & final dose in a month when we go back to the clinic. He didn't even flinch when he got it! What a trooper! He's been sleeping for the last three hourse, so I'm sure he'll be hungry and cranky when he does wake up :)

We've also been asked to speak at our CF Educational Day on November 14th. They love our positive attitude on becoming involved with clinical research, and have been asked to say a quick blurb on our opinions and why we are so determined to help with research in any way we can. As soon as we come up with our short (but sweet of course!) speech I'll post it here!


  1. Glad to hear your little one is doing so well. Sounds like he's gonna be tall. Mine is 13 months and only 1 inch taller.

  2. Glad to hear the visit went well. I can only imagine how he entertained the staff. And I'm so proud you guys were asked to speak! Good work.

  3. Thanks for stopping by my blog. :) I've been reading up on your remarkable little boy. Kids are amazing aren't they! I've learned so much from Matthew and all the children at the hospital we come into contact with each week.
    I'll add little (big) Gavin to my prayers. I lost a friend of mine back in 6th grade to CF (that was back in 1989). So, it is a disease that as touched me as well. I'm SO happy the medical community is doing so well with medications and research! Hopefully by the time sweet Gavin gives you some one will have to suffer due to it. Wouldn't that be wonderful? :) hugs!

  4. Hi! I saw your post on the MckForum about hummus/fattening foods and came over here because I am new to the MckForum and not 100% sure how to comment... :)

    I suggest avacado!!! It is full of good fats and a really healthy choice. My daughter doesn't like the taste of plain avacado very much so I mix it with some fruit, to sweeten it up a bit, and she loves it! She also does better with pureed avacado (vs mashed).

    Good luck and your son is a cutie!!!

  5. Congrats on the great appointment!! I'm sure his weight will catch up in no-time!!

    That's awesome that you were asked to speak at CF Education Day! You will love it!! And I'm so happy that you two have become so involved and helping and encouraging others...AWESOME!!