Thursday, September 30, 2010

Done & Done!! Love a finished project.

~I am the proud owner of world's largest chalkboard... I have been wanting to paint a wall in my basement for quite some time now. Well I finally finished it on Sun. It looks so great! You can tint the paint to be any color I used a slate grey. I love it! I can't wait for Makena to try it out. Needless to say my back and arms are still sore! dark colors are a pain to paint!

~Lilly got her stitches out on Mon. Yay!! She is stitch free!!

~I had clinic on Mon, Pfts were about the same. I feel I am on the fence of still feeling good and a possible 2 wk stint in the joint, so for now we are just staying on top of things. I feel fine just have lots of mucus TMI I know ;) Anyways I go back in 2 wks to blow again and see where I am at.

~The UTES are on FIRE!!! We had our homecoming game last Sat we won 56 to 3 WHAT??? Were we even playing another team ?!? ;)

~I am in charge of a roundtable for CF parents night next week and am still brainstorming some ideas. I want to make my roundtable interactive any ideas for me. I def want to do something where they can put their name in a drawing for one of my paintings. I figure the best beneficial thing would be for the parents just to ask me questions so I'll do that for sure but want to do something else too...

~Seriously?!?!? Its not even Oct yet and I am seeing Christmas decorations everywhere C'mon retail world stop rushing life! Enjoy the moment! GOODNESS!! I need to start thinking of good Halloween costumes I saw this it could be a possibility. Oscar could be the taco and Lills and I could be Hot sauce or something.... well it's not set in stone ;)

~But seeing this Christmas stuff gets me brainstorming Christmas cards... I am running out of pic ideas for me and the babies... any ideas for me on this one? 

Ok well thats a lil recap of what has been going on in  my world... Been crazy busy around here but Busy is good! Hope you all are enjoying Autumn! Xo

Friday, September 24, 2010

Awesome! This is HUGE

“Improving Access to Clinical Trials Act” Passes U.S. House, Heads to President for Signature
September 23, 2010
Today the U.S. House of Representatives passed the “Improving Access to Clinical Trials Act” (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.
The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it.

This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. Passage of this legislation is particularly important for people with CF, a rare genetic disease.
A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.
“Because of this groundbreaking legislation, people with CF and other rare diseases will no longer be forced to choose between critical health care coverage and participation in research that could lead to the development of a cure for our most serious illnesses,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.

To read more visit

Monday, September 20, 2010

Kate Sneddon

This month's Hero of Hope Living with CF, Kate Sneddon, 16, is an exceptional teen who is balanced, positive and compliant with all treatments that her chronic disease of cystic fibrosis demands. She was named a Hero of Hope, not only because of her dedication to her health, but also because of her academic, community service and athletic accomplishments. She is also an excellent student with an "A" average, a talented artist that has displayed artwork regionally, a dedicated volunteer for the Cystic Fibrosis Foundation and a hardworking athlete in several sports.

"I wouldn't call myself a super teen by any means, but I strive to do my best so that I can be proud of everything that I do," said Kate. "In a way, CF has given me perspective. I'm not glad that I have CF, but it's helped me to be glad for what I have versus wanting what I don't have."

Heroes of Hope™ Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs.  To date, Heroes of Hope has honored over 70 outstanding individuals with CF around the United States.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Kate, go here

To nominate your hero click here

Wednesday, September 15, 2010


Lills had her surgery on Mon.

She's recovering well, she came home a lil groggy and was only mad at me for about an hour this time. I had the mass sent to the pathologist, I will get the results next week to make sure they got all the cancer. This time her surgery was on her left side last time it was on the right, 3 years ago it was on her chest. She's a Rock*!

She is doing great and is ready to play. Just one more day of taking it easy tho just to be safe. Tomorrow we will play ball! She's been walking around with the ball in her mouth all day I know she can't wait.

I hope everyone is having a great week. I can't believe it's almost Oct. I smell fall! Xo

Thursday, September 9, 2010


Well I guess it's true what they say... A mother ALWAYS knows!

Lills has another Mast cell tumor that needs to be removed on Mon. It's smaller than the last one and I caught it early which is good. Her doc thinks he can just remove it by doing a block and sedation, meaning she doesn't have to go all the way under. It makes me so sad and breaks my heart that she has to do it all over again so soon. I hope she won't be to mad at me on Mon.

This is her eating frosty paws ice cream.... She will be getting lots of treats next week.

Monday, September 6, 2010

a lil bit of everything

Ok fall is in the air... I can't believe summer is over :(

Some things that have been going on...

~ FOOTBALL season is upon us!!! :) Yahoo GO UTES AND CHARGERS!!! I went to the opening game for the UTES what a game we played PITT and they were ranked 15 and we were ranked 24 it was a close game. Actually it was a nail biter... ahhhhh! But we pulled it out. That's right the UTES won! Woop Woop

~OKTOBERFEST So much fun!! Went with my Fam and Rickis fam. Its up at snowbird which is about 7900-11000 ft high. The higher elevation is a lil tough on the twins for me so had to bust out EVY aka the EVERGO. He treated me well tho and kept me satting around 92 on 2 1/2 liters. I prob could of turned it up even more being that my heart rate hovered around 120 resting. I was a lil nervous being that it was my first public outing on o2 well minus the airports. Of course there were head tilts and people staring, but I just waved and smiled at them and said hi ;) It was a great time and I just love seeing Ricki and Somer part 2 aka Makena and Roise... they are so cute together.

~Everything princess!!!

~Started Aztreonam... I mean Cayston I think I will always call it Aztreonam. Feeling a lil slugish so hopefully this will whip those lil mucus monsters into shape, because I definitely GOT MUCUS! I think maybe there should be a CF calendar kind of like the old GOT MILK adds but instead GOT MUCUS... I think it will go over really well ;)

~The babies are good I take Lills back in this week to get another spot checked I am praying its nothing So please send her positive thoughts. I found it literally 10 min after getting her home from getting her stitches out from the last surgery. My heart just sank but I am so hoping its just a mole.

~I didn't win the surf contest with but they asked if they could put my video on their website so I'll let ya know when they put that on there.

~I hope everyone is enjoying their Labor day weekend!! Xo

Thursday, September 2, 2010

Take advantage of this GREAT new program

Genentech, the makers of Pulmozyme® (dornase alfa) Inhalation Solution, is committed to helping all patients access our medicines, regardless of their ability to pay. That is why we are introducing the Pulmozyme Access Solutions Co-Pay Card Program, designed to help pay for Pulmozyme monthly co-pay costs.
Pulmozyme Access Solutions Co-Pay Card
Contact your healthcare provider,, or call 
1-877-PZ4URCF (1-877-794-8723) for more information and eligibility requirements.
Pulmozyme Access Solutions
Also, for coverage and reimbursement support, patient assistance, and informational resources,

For more information about Pulmozyme,, or see the Pulmozyme full prescribing information

Genentech: A Member of the Roche Group

Please see Important Safety Information below and accompanying Prescribing Information.

Daily administration of Pulmozyme along with standard therapies is indicated in the management of cystic fibrosis patients to improve lung function. In patients with a forced vital capacity (volume of air exhaled with maximum effort and speed) greater than or equal to 40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring the administration of injectable antibiotics. In our pivotal study, safety and efficacy of daily administration has not been studied in patients beyond 12 months.

Important Safety Information
Pulmozyme should not be used in patients who are allergic to any of its ingredients. Pulmozyme should be used in conjunction with standard therapies for CF. When starting Pulmozyme therapy, patients may experience change in or loss of voice, discomfort in the throat, chest pain, red watery eyes, rash, dizziness, fever, orrunny nose. These side effects are usually mild and short-lived. If you experience any of the above, please report them to your doctor immediately. 

You are encouraged to report negative side effects of prescription drugs to the FDA., or call 1-800-FDA-1088.

Wednesday, September 1, 2010

Handle with Care

Ok now that I finished The Hunger games Trilogy I am on to my next good read...

I am reading 
Jodi is an amazing author, this is not the first book I have read by her and definitely not the last. I also really loved My sister's keeper. She really makes each book and character come to life. She is relentless when it comes to researching every detail of her subject matter. She writes about many disabilities that are unknown and by doing this she raises awareness and is educating people through her work. Definitely changing lives and making a difference.

Handle with Care is no different I love Willow and love how she is seen as a child and not a disability. I think many of us can identify with that. I actually e mailed Jodi I would love to see her write a book about CF. She doesn't have plans to do so at this time, but she never says never :)

Have any of you read this book? What did you think? No spoilers tho I am not finished yet.