Sunday, September 7, 2014

Q&A With Med Students

E's doctor does a lecture about CF every year for a group of first year medical students.  He spends about an hour talking about the medical side of CF and then has a patient and family come in to talk about the personal side of it.  He asked if we would like to come and answer some questions about how CF has affected our lives, and of course we said yes!
I was very impressed with the questions they asked.  Here are a few of the ones that I remember:

How was she diagnosed with cystic fibrosis?
What types of treatments does she currently do on a daily basis?
What kinds of things do you do differently with her than you did with your other babies?
What type of breast feeding support did you receive after finding out she was not gaining weight?
Do her siblings understand what CF is?
Do people treat her differently since she has CF?
What kind of financial strain has it put on your family?
Has this affected your decision to have more children?
What do you think is the biggest misconception about CF?
How is the health of some of the other people you know with CF?
What are some of the experiences, good and bad, that you have had with doctors since she was born?
What is one thing you would tell a parent of a newly diagnosed baby?

For anyone who knows me, you know that sitting in the front of a large room and speaking to 168 people is completely out of my comfort zone!  I was shaky at first.  I rambled and lost my train of thought and said some strange things every now and then.  But luckily when it got awkward, E would do something cute and make them all laugh!
We were really happy to be able to share our story with some future doctors and hopefully give them a glimpse of what it is like to have a child with cystic fibrosis.
If you are interested in the answers to any of these questions, feel free to ask!

Clinic 09/03/14

E had her CF Clinic visit this past week and we were happy to receive only good news this time!  Her labs showed that her vitamin D level was back up to normal so we don't have to do the extra vitamin D supplement anymore.  She did gain a little weight, so that's good!  And we figured out how to get her to wear a mask while we were there.  We played "hide your nose" and it worked like a charm!

Swallowing Enzymes Whole

Learning how to take her "enzymes" has been an ongoing process.  First we opened up the capsules and poured the beads out onto a spoonful of applesauce.  Then I tried putting the whole capsule in a spoonful of applesauce.  Then a few months later I gave her the capsule and she put it into an applesauce pouch by herself.  After she had that down, we tried this method...

She has already mastered taking her small Zenpep 5000 pills so we moved on to bigger ones.  And now, she will pop a Zenpep 25 in her mouth and swallow it with a sip of water.  I am so amazed at how well she has done with this!  It took a lot of baby steps to get to this point but I am so proud of her and also very happy to be able to leave the house without applesauce now!