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"Arbonne for Ava" Fundraiser

So Thankful

It would be hard to write anything at this time of year without focusing on life’s blessings.  Just over the last few months, we have been thankful again and again.

Through the summer & fall, Ava has been able to do the things every child should.  We haven’t missed a therapy treatment, but still manage to squeeze in:

Running a touchdown at Cowboy Stadium

A trip to the beach

Turning 5!

And being a pirate for Halloween.

Ava’s most recent CF appointment, in September, could not have gone better.  Her oxygen saturation hit 100% and her BMI is still well above the 50^th percentile, hanging in around the 60^th. 

She is continuing to improve at taking the pulmonary function test.  Soon this will give us an even better idea of her lung health.  The doctor said her lungs sounded clear and we don’t need to follow up for another 3 months! 

The Cystic Fibrosis Foundation continues to take steps to make CF stand for “Cure Found.”  Just yesterday an article was published about their collaboration with a pharmaceutical company to develop drugs for patients with the Delta F508 mutation, Ava’s mutation.  You can read more here:  Genzyme-and-CFFT-to-Collaborate

 

Lastly, Ava told me she is thankful that she didn’t have to stay in the hospital this year.  For this, we are whole heartedly thankful to the advances made by the CF Foundation & the efforts of all of Ava’s Angels - those who continually pray, educate, walk, donate, fund raise, and do whatever they can to make a difference in the lives of those with Cystic Fibrosis.

Thank you.

Ava's June Appointment

As long as she is doing well, Ava only has to see her CF team every 3 months.  Once a year she has her big, annual appointment with extra lab work & x-rays.  These appointments always fill Ava with much anxiety, as she does not like being gagged & poked.  I, too, am always nervous.  I feel so responsible for Ava's health that if she isn't doing well, I feel that I have failed her.

 Thankfully, our most recent visit at the end of June went very well.

At the start of our day, Ava gets the numbing cream on her arm prior to her blood draw.  She assures us that it does not work but tries to be brave anyway.  Her results looked good, although she may have to start taking a vitamin D supplement.  As a fat-soluble vitamin, it is hard for her body to absorb.

Ava's oxygen saturation level was at 97% and the doctor is not concerned as long as it is above 95%.  We also tried the pulmonary function test (seen above) but Ava is a bit young to get an accurate reading from it.

Ava continues to grow right on track.  She is now 39 lbs & a bit over 41 inches.  The most exciting part is that her BMI is in the 75th percentile & the goal for CF kids is to be at or above the 50th! There appears to be a link between healthy weight & healthy lungs so way to go Ava!

Ava is quick to tell you that the chest x-ray is her favorite part of the day.  After looking at the image and listening to her lungs, Dr. Lipton said he didn't see or hear anything to cause concern. Her throat culture also showed no need for antibiotics at this time.  More good news!

Most visits offer some change to Ava's therapy & treatments.  Today, she tried a stronger dose of one of her inhaled medications and since she tolerated it, it is now part of our daily routine.

A long and emotional day, but also one full of good news and hope of a healthy future for Ava.  We are forever grateful to all those who have in anyway become a part of Ava's Angels and continue to help us get closer & closer to a cure!

Ava Runs

A short video to introduce Ava and the challenges of life with CF.