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!
Thursday, February 25, 2010
Monday, February 1, 2010
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!
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!
Subscribe to:
Posts (Atom)