CF Clinic

As I mentioned previously, A had his CF clinic appointment yesterday.  The appointment went well.  A’s lung function has remained the same, which I’m very thankful for.  Also A and I didn’t have to complain about anything this time so we were all in good spirits.  ;)  The appointment was incredibly long – 3 hours!! and W was a trooper.  Books were read, snacks were consumed, walks were taken, and mom was pretty tired by the end of the appointment. :)

I enjoy going to A’s appointments because I like meeting other people affected by CF.  I’m not saying I want anyone else to have to battle CF, but I do enjoy hearing stories of hope and meeting people who can relate.  One lady I talked to for awhile.  She and her husband were at the clinic with their grandson who has CF.  She was incredibly sweet and explained that her grandson was 24 years old.  He was very close to needing a lung transplant, but is one of the few who has the CF gene that Kalydeco is approved for.  Since starting on the drug, her grandson’s health has improved greatly – so much so that he doesn’t need a lung transplant.  Of course, no one is sure what the future holds, but what an amazing, uplifting story.  Science is remarkable.  Kalydeco was found to be ineffective in treating the most common type of CF – the delta f508 mutation, but if scientists found something that works for the g551d gene mutation, my hope is that they can find something for delta f508!!

The lady wanted to know all about W.  I explained to her that A had CF, but I had had lots of genetic testing done and was not a carrier (to some degree of certainty).  I told her that W does not have CF, but is a carrier.  I also told her that we had to go through IVF in order to have W, but that he was worth it and perfect in every way.  She agreed. :)

I also met another mom who’s daughter was diagnosed with CF at 17.  I imagine that is very rare.  Her daughter had a 1 year old.  There’s a long story about that, but I gathered he was unplanned and was a happy surprise.  He was a cutie and wanted to play with W, but W wasn’t so sure.  W finally sat down to play with the little boy and the little boy was so excited, he threw a book at W.  Oops.

 

Since we were in Chicago, I had hoped to make it to the Children’s Museum, but the extra long appointment threw off my plans.  We went to Navy Pier for lunch and walked around <inside>.  Overall a great (albeit exhausting) day!  And there was no shortage of compliments on how cute W is and how well he behaved.  I love my boy.

Sorry about the font... Obviously I suck at blog aesthetics.  I've been wanting to change the blog design since day 1, but need to figure out how to do so.