Monday, April 30, 2012

Great Strides

We are making "Great Strides" towards discovering more helpful tools, medication, and treatments for Cystic Fibrosis. Great Strides, the annual walk that benefits research for CF, is coming up in May. 

In the past year a new drug has been approved that treats the underlying causes of CF--not just the symptoms! It is for CF patients with a specific gene mutation, different from the two gene mutations Quinn has, but work is being done to find additional drugs that would have a similar impact on Quinn's gene mutation. This is a big deal.

What we are saying is that RESEARCH WORKS and, yes, I am shouting :)

If you have some spare change...$5 to $50,000,000*...would you consider donating to Quinn's Great Strides fundraising campaign and get a little Quinn update too?  

(*if you have $50,000,000 would you call me directly because I have some ideas for you!)

And I'll leave you with a little Quinn story from two weeks ago.


Quinn was playing in a very cool blanket fort. I called everyone to come to the table to eat and we had a good time at dinner. After dinner Quinn headed back to the fort and a few minutes later he appeared holding his tube. His feeding tube. He decided it must have come out before dinner because he found it on the floor of his fort! The balloon had popped and it just came right out. Thankfully, we did not panic! Whew!


We began trying to insert a new tube. Without success. And then, we felt panicky. I called and talked to our on-call CF doctor at OHSU. After a little consultation we headed up to the ER at OHSU. After a G-tube comes out a new one should go back in within four hours at the most. The hole begins to change. We had covered the hole with saran wrap and some Avengers band-aids--because that makes everything better. After the initial attempts to get the tube in failed and we had our panic moment, we made a Plan B and away we went.

You have to understand that Quinn HATES having his tube changed. It raises his anxiety level, tears, and fear factor about 100%. While there were tears as we tried to get the tube in at home, he really held his composure. Up in the ER the staff was awesome and we are a pretty hands on family so being in the ER doesn't freak us out like it used to. And we are willing to say what we need and advocate for Quinn. The staff did a great job trying various ways to get the tube reinserted. Again, Quinn was talking to nurses and volunteers, chatting with the doctor, and impressing everyone with his wise and funny stories. Finally, a doctor massaged the tube back in! And Quinn was such a trooper. 


I had to think again...this is my six year old. Really? So composed. A few moments where the tears were almost coming and Quinn would just say, "That hurts." And then the staff would stop and Quinn would take a deep breath and then say something funny. And try to pop some bubbles. 


Wow. What a kid!

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