Archive for the 'Cystic Fibrosis' Category

We had a great time at the Dance For Dominic!!!

Today was the 2nd Annual Dance For Dominic. It’s a fundraising “Kids Prom.” The purpose is to help raise money for my friend’s son, Dominic’s medical expenses, but a portion of the proceeds goes toward the Cystic Fibrosis Foundation, and research towards a cure.

Just like last year, it was a great time…the children had such a fabulous time, dancing…watching a magician, eating. It appears that we were at least as successful as we were last year. We are searching for a new venue, as we seem to have outgrown the hall we used last year and this year.
Mariella was fully recovered from her stomach bug, so she was allowed to go. She was very droopy, just sitting on a chair, watching all the activity. At first, I thought that she was just tired. Until I looked at her fingernails. They were tinged with blue. So, I puffed her. Literally in seconds, she was like a new kid. I think that unless she’s actively coughing, or experiencing a tight chest…she doesn’t always realize if she’s not exchanging her air well. She hasn’t figured out that feeling. We talked about listening to her chest and her body. That her teachers at school aren’t looking at her fingernails and lips to see if she is getting blue. I’m not able to ask the teachers to look for that…it’s really not their job. Since they already think she has ADD, I hesitate to tell them that if she is lethargic or lacking attention, to send her to the nurse. This blue thing has been happening more often, and it’s concerning me. I hate that we have to wait until May 3rd for her appointment.

A little bit of a begging post today…

The girls and I typically do the Crop Walk every year. I don’t often put my fundraising information out there…because I hate to beg…but, I’m begging for something else this year.

My best friends son has Cystic Fibrosis. It is a disease that affects about 30,000 Americans. Because it’s such a rare disease, with not a lot of people affected, it gets very little federal funding for research. People who are diagnosed can expect a life span of about 37 years. Some live longer, and too many die much younger. A CF warrior named Eva Markvoort died last Saturday, waiting for her second lung transplant. (if you want to read an inspiring blog, is a great one…but, be prepared to get lost in it, and have tissues)

We are very, very lucky that D is as healthy as he is. It’s attributed to his having a fabulous, proactive care team at his CF center. Hopefully, he can maintain his health, but, CF is a progressive, fatal disease. It is almost guaranteed that Jenn will outlive her son.

It’s also personal to me, because Mariella is treated like a CF patient. She doesn’t carry the genetics, but her belly and lungs behave exactly as a CF patient’s do. Her pulmonary meds are those of a CF patient. Her gastro meds are at a CF patient’s dosage. All the research that is done to help patients with CF helps Mariella as well.

I know things are tight this year…and I know that everyone has their own “pet” charities to donate to. I ask that you consider donating something to raising money to research for CF. NINETY CENTS of every dollar goes directly toward research. It is actually one of the best charities out there for efficient use of funds. You don’t see the public service announcements on television for CF, like you do for other diseases, because the foundation believes their money is better spent in a lab than on advertisements. It’s word of mouth that keeps the foundation in money.

Thanks so much…

Never a good thing……

It’s always a bit disconcerting to have medical professionals ask if Mariella has been sweated for CF. It’s even more disconcerting to have a medical professional ask that question on Monday, then find out on Tuesday, that your child was a topic of discussion at a meeting of organizers of the local “Great Strides” walk. (annual fundraising walk for CF) All of the organizers are parents of CFer’s

My girlfriend’s son has CF. He was a miss in newborn screening, and didn’t get a diagnosis until age 4. My friend told me later that she sat in the geneticists office and said, “you’re not supposed to be talking to me, you’re supposed to be talking to my girlfriend…her daughter is sicker than my son.”

We already treat her like a CFer, with quite a few things. She does airway clearance. Her sick plan resembles the sick plan of a CF patient. The cough is often the cough of a CFer. It’s not the answer I want…but you know…sometimes…I think…”Hell, at least it’s a flipping answer!”

Tonight is just a night that I’ve had enough. I was already feeling a little blue because of her vomiting episodes…the fact that I’m listening to her cough in her sleep. Then to hear that she was a topic of discussion at the Great Strides meeting, just set me over the edge a little. I think I just need a good cry.