Our Cystic Life!

Alison has a clinic appt. this week, so I wanted to quickly give our family and friends an update to the Cystic part of our life. 

She had PFT's, her last one was in July.  Her FEV1 was 112% predicted, which is better than normal.  FEV1 is the amount of air that can be forcibly exhaled from the lungs during the 1st second of spirometry.  Her FEV1/FVC was 135% predicted. She is a rockstar! 

However, her weight continues to be an issue.  She only gained 1 pound since November, and she grew lots taller.  So, that means her BMI is dangerously low. She is teeny.  I saw her in her bathing suit at the Y last night and I just wanted to cry.  She does not have the "bulk" to fight an infection if she gets one.  That is what happened 2 years ago and resulted in her lung surgery. Even though her PFT's are great, which they would be if the diseased portion of the lung shuts down, like last time and isn't measured.  That part of the lung just doesn't get measured, so its like its not even there and the PFT's measure the healthy working portion.

That means it is so important to try and figure out how to get her gain some weight.    We do not want to end up in the hospital this spring!  We are not afraid to resort to bribery!

Her lungs sounded clear, and she learned a new way to cough after chest therapy.  She is expelling some mucus with this new coughing, so we will keep it up.  Unfortunately it really wears her out.  She is so good at hiding how she is affected by her cystic life.  She plays hard all day, but boy does she crash at night!  And all these treatments burn calories.  How on earth can we get her to eat a 3000/day calorie diet?

I asked if we should cut back on activities cause of burning calories, but they said no.  Her dancing is really good for her, and they were thrilled to learn that she is running.  Running can really rattle things up in her lungs and help her expel the crap!  She will start tumbling next week.  She can't wait!

We also visited the dentist, no cavities for her, but her teeth continue to yellow from all her meds.  I feel so bad for her cause kids can be so cruel!  The doc said we could try the white strips on her but that she is just too young for bleaching.  Just one more thing this kiddo deals with.

That's all for now!  Thank you for all the support and prayers! 
Great Strides is just around the corner and the Wine event is even closer!