Not the best news I've heard all day

I don't know if I put on the blog that Drew was having another bronchoscopy or not. Regardless, he had one on Tuesday. The doctors thought that it looked as though his malacia had improved a little bit. His lungs still look "funny" but they are hopeful that with time they will grow and develop into normal looking lungs.

They did a culture of some mucus they got from way down in the lower airways and we just got a call today that he's growing Pseudomonas. UGH!!! Pseudomonas is a bacteria often found in the lungs of CF people. It thrives in the warm, damp environment that the mucus in the lungs of CF kids creates. Unlike staph, for example, its incredibly hard to get rid of. Its the #1 cause of decreased lung function in CF patients. Our doctors said that they treat Pseudomonas very aggressively in babies to attempt to eradicate it before it colonizes in the lungs. Drew will be on an oral antibiotics for 2 weeks and an inhaled antibiotic (Tobi) for 28 days. At the end of the 28 days they will re-culture his mucus to see if they got it. I think that patients are often put on a Tobi schedule of 28 days on, 28 days off, 28 days on. I'm not sure if that will be the case for us or not. I guess we'll see how this goes.

All of the past cultures done on Drew have only shown Staph, which I guess is what I was expecting. I use to say "only staph" with hesitation, as staph in the lungs doesn't sound like something good. But I learned that staph in the lungs of CF people is normal, and its not a problem unless its flaring up, at which point it can usually be treated with an oral antibiotic. I did not/do not want Pseudomonas in Drew's lungs.

I know I am beating a dead horse, but Cystic Fibrosis is not a federally funded disease. That means that the only research being done on new drugs and treatments to improve the quality of life for and cure this horrible disease is being funded by YOU AND ME! More now than ever I need your support. I've asked for help. I've opened my heart to you. And hearing today that Drew has Pseudomonas broke me down. The first new inhaled antibiotic to treat these chronic and resistant lung infections was discovered by research funded by YOU AND ME. There are two investigational studies currently going on that aim to correct the basic defect of CF - funded by none other than YOU AND ME. A total of eight promising CF therapies are currently in Phase 3 trials, the final stage of clinical testing. Any one of these therapies -- or a combination -- could have a profound impact on the lives of those with CF. None of these would be possible without your support and donations.

So I've put together a list of ways you can help. Here goes:

• Spread the word!! Share Drew's video with just 5 people you know. Here's the link: http://66roses.blogspot.com/2011/01/doin-it-for-drew.html
• Donate to our Great Strides team by clicking HERE. If you can only spare $5, we will appreciate your $5. If you can spare $500, we will appreciate that too.
• Sign up to walk with us in a city near you. Here is the link to a list of cities that Team Doin' It For Drew is walking in, as well as a link to find a walk in a city near you: http://66roses.blogspot.com/p/great-strides.html
• Ask your company if they are willing to support Cystic Fibrosis by offering matching gifts on donations, or by making a corporate donation. You never know how many people you can reach until you ask. The worst they can say is no.
• Become an Advocate for CF. It takes but a moment of your time to send a pre-drafted letter to your congressman/woman, petitioning them to get federal support for Cystic Fibrosis. Imagine if we had government funding for research instead of just the money that I'm able to raise!! Click here to read more about becoming an advocate: BECOME AN ADVOCATE
• Say a prayer for little Drew. He needs it. And if you have one to spare, I could probably use one too.

Doin' It For Drew

The time has come to kick off our 2011 Great Strides Campaign. Team Doin' It For Drew is going big this year. We've committed to raise $15,000 and we need your help. Watch this video, then read what I have to say about it...

Make photo slide shows at www.OneTrueMedia.com

DONATE NOW BY CLICKING HERE

This past year was not an easy one for Drew. He spent the first month of his life in the NICU at Children's Hospital in Cincinnati. He had 4 major surgeries and countless hospital stays. Everyday, he spends between 2 and 3 hours doing airway clearance and breathing treatments to keep his lungs healthy. We have cabinets full of medication that Drew must take on a daily basis. The best part about Drew is that he does it all with a smile on his face. We are learning more every day, and, through Drew, we've discovered a new world of support, education, and opportunity for those living with Cystic Fibrosis. Unfortunately, it does not change the fact that there is currently no cure. But you can help to change that.

On May 21, 2011, we will be walking alongside friends and family in the Cystic Fibrosis Foundation's GREAT STRIDES fundraising event. In 2010, nearly $35 million was raised which was used to support vital CF programs. The Cystic Fibrosis Foundation is the primary sponsor of critical research that is making tremendous advances toward a cure and control for CF. Will you help me raise much-needed funds and increase awareness of our efforts to cure cystic fibrosis. Will you help me to find the cure for Drew?

If everyone who reads this post and watches this video donates even just $5, we can make a huge impact for those living with Cystic Fibrosis. Please know that whatever amount you are able to contribute is greatly appreciated. The CF Foundation has consistently been recognized as one of the top voluntary health organizations in the country at efficiently using its money raised to invest in research and medical programs. By investing in the CFF you are helping to fund the landmark research that will, one day, make a tremendous difference in the lives of those with the disease. With your help, we can give the children and adults with CF the quality of life and the future they deserve.

I'm asking you to donate.I'm asking you to walk with us and ask your friends and coworkers to donate. I'm asking you to share this post, this video, this message. If you can help me to help Drew I will forever be in debt to you. IF YOU CLICK HERE, YOU ARE AWESOME!!! Thank you from the bottom of my heart!

To read more about Drew, visit our blog homepage by going to www.66roses.com.

DONATE NOW BY CLICKING HERE

Trying to make a difference

I think that everyone here is (knock on wood) finally on the mend. Lily still doesn't sound great but things never got worse. Ella just wrapped up her antibiotic yesterday and both looks and sounds better. We're not 100% but we're getting there. Drew never really got to terrible sick. He was on antibiotics until Friday but we had to take him off of them 3 days prior to his bronchoscopy, scheduled for Tuesday. Things always get hairy with anesthesia when they hear and see Drew. They want kids to be "healthy" before they put them under so they really do just have to take our word for it that the way he sounds is "normal". Hes coughing a little more than his baseline but I don't know that I'd call him sick. I guess we'll just have to see what they say when we go in on Tuesday.

I went to a CF Fundraiser Kick-off event last Thursday and really had a nice time. I got inspired by a little story attached to the roses they handed out. You've probably heard it before, the one about the starfish, but incase you haven't here is it:

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "I made a difference to that one!"

I want to make a difference for my one. I want to make a difference for more than my one. I'm committing to doing more this year. You just never know how much you can do if you're not willing to try.

Sick kids are making me CRAZY!! I was back at the doctor again today with Lily. For those of you who haven't been following lately, I was at the doctor last Tuesday and Thursday with Ella who had pneumonia, and then Sunday and just this morning again with Lily who had/has croup and may or may not have RSV now. She sounds atrocious. There is so much snot and whining and crying going on in this house that I'm ready to pull my hair out.

I am tired of everyone not feeling well. Its hard, I'm not gonna lie. When I told Ella this morning that we needed to get dressed to take Lily back to the doctor she had a damn meltdown. Like taking off her clothes and running naked through the house kicking and screaming because she didn't want to go. Can't say I blame her. We've spent WAY to much time there lately, and I beg her to sit nicely in a really hot 8x8 room full of 3 unhappy kids and bribe her with candy canes and trips to McDonalds if she is a good girl. She inevitably has to go potty as soon as the doctor [that we've so patiently been waiting for for an hour] walks in the door. Its not fair to the doctor or to me that I can't even hardly listen to what he has to say because I can't keep my children under control. But what is my other choice? I have had so much help and support from our friends, but I can't send my sick kids to their houses to get their kids sick. And Martin's work has been great as far as flexibility, but I'm sure we're toeing the line, if we have't already officially crossed it, on taking time off for a doctors appointments and the like.

Between remembering medication times and amounts and calling doctors to follow up and schedule appointments and wiping noses and teary eyes and feeding and changing and hugging and playing, I am officially worn out. A great friend surprised us with dinner tonight which was a Godsend. Ella had the garlic butter that came with the breadsticks and that was about it. I didn't have the energy for a fight. I hope everyone gets out of the funk they're in soon because mama bear can't take much more of this.

All quiet on the homefront

I've been challenged lately. We're getting close to Drew (and Lily's) first birthday and I'm thinking about all that we have to celebrate. The Great Strides Fundraiser is about to begin and I'm thinking about how I can get the most out of it. I'm tired of being stuck inside and have been trying to get creative with things to do inside that don't require tons of time to set up or clean up.

I spend WAY to much time online doing absolutely nothing. Okay, that's not exactly true. I do a lot of "research". I read a lot about CF and have been focused lately on fundraising ideas. I've been inspired by one of my favorite bloggers - Kelle Hampton - as her daughter just turned one and she raised nearly $100,000 for the NDSS. I wish I could make that happen for Drew. The thing is, since I started this blog, I've had 8,820 unique visitors. If every person that visited my site and read about us, about Drew, about CF were able to donate just $5, we'd be halfway there. I think people get embarrassed or ashamed that they can't donate a large amount. But small bits add up! And hey, don't let me stop you at $5. By all means, if you feel so inclined to donate your tax return... . I like to think that I'm creative and that I'm motivated (in some ways more than others). I want to be the next Susan G. Komen. I want to be a mom who had a great idea and was able to change the world for my kid and a lot of other people. I guess that's something we all want deep down, right?

I'm going to make a hard push in a couple of weeks. I've got t-shirts made and will be offering them to anyone who donates or raises more than a certain amount. Additionally, they'll be available for purchase with all proceeds going straight to the CFF. I'm going to ask people to help; to help us with a donation, to help us with support by walking, to help us by spreading the word. If Drew has touched your life in any way (and if you've been here before, I know he has), I'm going to ask for your help. Please know how grateful I am. I can't even express it in words because it's just a feeling. I'm grateful for all that everyone has done for us this past year and I continue to be grateful everyday for good health, good doctors and good friends. He's my baby. He's a total mama's boy and I embrace it. And he needs your help.

Okay, this isn't the fundraising post so I'll stop with that and save it for when the actual fundraising begins. Martin is going out of town tomorrow morning and won't be back until Monday night. It should prove an interesting few days here. I'm so over being stuck inside. I think i'm most excited that by springtime, both kids will (should) be walking and I can leave the house. Don't think I haven't thought about the challenges that 3 walking kids will bring when there's only 1 of me to chase after them. I'm ready for it though so bring it on.

All three are sound asleep right now, so i'm going to make some coffee, close my eyes, and enjoy the peace that is all quite in my house.

Ready for spring

Ella's illness has been upgraded from the flu to the flu and pneumonia. We were back at the doctor today, in the middle of our snowstorm. She was wheezing a bit and they wanted to see her, and sure enough she's got pneumonia. They gave her some antibiotics which will hopefully bring her back to life in the next 24-48 hours, but said the flu symptoms might hang on for 5-7 days. Ugh! I have to call Drew's doctor tomorrow to see if they want to treat him prophylacticly. Pneumonia is a bad thing for someone with CF to get. He doesn't have any signs or symptoms of getting sick, but I'm pretty sure that the reality of life with 3 kids is that when 1 gets sick, they all get sick. Hopefully we dodge this bullet, fingers crossed. I really just need some fresh spring air and the ability to open my windows and air out this germ filled house. Soon enough.