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!

Great Strides 2010

Take a breath...a really deep one...it feels great doesn't it? Now, get a straw, put that between your lips and take that deep breath one more time. Doesn't feel as good does it? Now, imagine that is how you take every breath...because you have Cystic Fibrosis.

Our nine year old daughter Alison, has this devastating genetic disease. On January 6, 2001, at just 1 day old, Alison was diagnosed with CF. She spent 116 days at Nationwide Children’s Hospital. It was so hard being told that all was not right, but with one look at our little girl we knew we could fight this and win!

There is STILL no cure for CF, the life expectancy for those with CF continues to climb to over age 37. This phenomenal progress is a direct result of fund raising efforts that have met the tremendous cost of medical research.

We invite you to join us in the annual Great Strides walk for CF. Alison and all of us have walked every year since she was born...and we won't stop until CF stands for Cure Found!

If you cannot walk with us, we hope that you will consider making a donation to Team Alison.

Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later.

To learn more about CF and the CF Foundation, visit www.cff.org.

Together, we can make a difference in Alison's life and the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!

Clinic Day

Today is a Tuesday and that takes Alison, Doug and I over to Nationwide Children's Hospital for CF Clinic. I am sure it will be more of the same...she is too thin, doesn't eat enough calories and more talk of another G-Tube. Blah blah blah. Haven't they caught on to her yet? I hope to be able to get them to hold off on any decision till after the holidays and her b-day. Then if things aren't better...well I can run, but I can't hide.

Work is crazy...we are packing up our office and moving to our new floor, back over to the Plaza One building, into a pretty nice space.

The house in and out is all decorated for Christmas, so the girls are really starting to get excited. I need to finish up just a few more things and then the shopping is done...on to wrapping. Anyone interested in some kid swapping for wrapping purposes please let me know.

Alison's dance recital is on Saturday. She is dancing in 2 shows this year. She is excited. It will be her first recital since joining the competition team. I can't wait to see her class on stage.

Later!

Appointment Results and a Busy Busy Week

Sorry, that there was just a big tease about Alison's clinic appt. As you can guess I wasn't running to post results because there just is not anything great to say. Bottom line...she is too little and it is going to eventually affect her health. Her PFT's were great, but she only weighs 38 pounds, and she will be 8 years old in less than 2 months. That is really all there is to say. I'm at a loss.

Then, our week just got crazy, with getting the girls ready to head to Grammy's and us to Chicago. We had a great time. Tom and Andrea had some great restaurants picked out for us to eat at, and on Saturday I had probably one of the best meals of my life!

The Buckeyes won and all 7 of us made to Chicago and back without voting anyone off the Island! I highly recommend the space and comfort of a Honda Odyssy. I was pretty comfortable the whole way, and there were 7 adults in the van. I hope the others feel the same way! I will post pictures once I get them off our camera.

This week will get even nuttier, Doug is currently on a plane to San Diego and will not return till late Thursday night. So, I am single parenting this week. This girls and I plan to do some bonding in the form of cleaning out closets, draws, and purging the toy room to prepare for birthday and Christmas. Anyone who wants to help is welcome to come on over! I am sure you will be running over to help!

Have a great week, and hope to see most of you on the 22nd for the OSU Michigan game, if not before.

November Clinic

Keep your fingers crossed - we are hoping for a weight gain! Alison has clinic today and will have a weight check and a lung function check (PFT). Think heavy and clear thoughts!

I will post once we are home tonight. We have a busy night, with Clinic, dance and Keegan has to go to the vet. He is just not right!

We also have tons to share, but no time to post....

August CF Clinic Update

So, today Alison had CF clinic and, it was not one of her best. Her weight is still of huge concern to Dr. Shell, she only gained .2 k. Her PFT's were good at 106, but still not up to what they were pre-spring.

Dr. Shell and Alison had a heart to heart about eating, and how important it is to her health. In particular, how important it is for a dancer to keep her strength up and stay healthy.

There is a direct connection between pulmonary health and nutrician. Basically, Alison is the size and weight of a 4 year old...in case you've lost track, she is 7 1/2.

He is really concerned and talked to her about alternatives (G-tube) and told her that she is old enough to understand and be a part of the solution.

I think it was good for her to hear it from him. She was upset, but understood. So, after cheerleading we went to Kroger and she did some shopping. Here is what my pantry now looks like...

Full of Junk! All stuff he said to have her eat. I will try anything!