Oh February, I loathe you

We had a week of absolutely fantastic weather here in Cincinnati last week. We went to the zoo. We played outside for hours (yes, hours!) more than 1 day last week. Ella's class spent the entire morning outside at preschool. And today its raining a freezing rain. Seriously, WTF!

The spring-like weather was invigorating. I had windows open in an effort to get all of the germs out of our house. Everyone is health-ish. Lily just wrapped up antibiotics for an ear infection. Drew finished up the Cipro (the oral antibiotic component in the fight against pseudomonas) and has 9 days left on the Tobi (the inhaled antibiotic component in the fight against pseudomonas). God-willing, we will be able to get rid of the pseudomonas. He would need several negative cultures in row to convince the docs that its gone. However, if he does test positive for it again, they won't necessarily immediately consider him "colonized", but he will go on a Tobi cycle. What that means is that he would take an oral antibiotic 3 days a week ongoing, and then do 28 days on Tobi and 28 days off Tobi and round and round until we would be able to get a negative culture, if ever again. I really really hope we can get rid of it for 2 reasons. First and foremost, its not good for him to have. Research has shown that the longer a person can go without pseudomonas in their airways the better their lung function tests are over the long term (meaning slower progression of lung disease). And the second and more selfish reason is that that darn Tobi takes almost 40 minutes to administer, and he gets that twice a day...after the 40 minutes of his other breathing treatments and airway clearance.

In other CF news, I'm so excited for the next step in my Great Strides fundraising. I have 3 online sponsors who are donating a portion of their sales (and one even offering you a discount if you use promo code "drew"!) to the CFF. I'm talking with 3 other people too who I'm hoping will get on board and do the same thing. If you are reading this and have anything that you would like to offer toward my efforts, I will gladly and graciously accept! I have also found another CF mama who works for a place where I can get t-shirts made for the Great Strides walk at a very reasonable price. I'm volunteering for "Thank You Thursday's" with the CFF, making calls to large donors just to thank them for helping out. I think that's really exciting because I'm not calling them asking them for anything; I'm simply thanking them for helping in the search for a cure. And I think they will appreciate the thanks. I would!

If anyone who reads this is interested in or knows of anyone who might be interested in helping out in any way, please don't hesitate to contact me. So many people ask me "How can I help!". If you don't want to walk, that's fine. I have so many other suggestions and ideas that range from subtle fundraisers where folks don't even realize they're helping out, to outright calling your friends and neighbors asking them what they can give. Just email me or call me or whatever. I love when people want to help. It warms my heart to know that so many people care about my boy.

Kindness & Generosity

This has been a busy start to our week! Ella started dance class yesterday morning and loved it. Its only 30 minutes (thank heavens!) because that's about the exact length of time that the twins are willing to sit in the stroller without complaining. We got home and they went down for naps, and Ella and I played Zingo. I had a conference call scheduled with other national team leaders for Great Strides at 1pm and I figured I could just feed the kids lunch, put the call on mute and listen while they played. However, during the time of the call, I had 2 different gutter guys knock on the door to discuss estimates. First of all, they were both supposed to be there yesterday. And what are the chances of them both showing up, at the same time, when I'm also on a conference call! I think that I got the most out of everything though. By some stroke of luck, the kids all played mostly quietly while I was on the call. The first gutter guy was giving me his pitch while introductions were still going on in the call. I had the second guy doing his measuring while I was talking to #1, and he didn't have a whole lot to say that I hadn't just heard so we cut to the chase and got his quote, and I was able to go about my call. Another gutter guy came at 4pm and was here until 5:40!!! Who knew someone had that much to say about gutters! Thank you sir, but please get out of my house. I have more important things to do.

I just have to say that hearing from other CF families is so inspiring for me. Some of these Great Strides teams raise hundreds and thousands of dollars every year for CF research. Others talked about the challenges of managing such huge campaigns while being a CF caregiver, because we all know that the passion of a CF parent to fund and find a cure is unparalleled. I could relate. I loved hearing all of their fundraising ideas as they ranged so far and wide. I wish I could do it all, I really really do.

You may recall this post about the Celebrity Waiters event and how put off I was by the lack of genuine care and concern about CF. People were there to rub elbows with other rich people and lost sight of the reason we were there in the first place. On the call today, one man made a good point. CF will never mean as much to many people as it does to you or I. Walking in Great Strides or making a donation toward Great Strides may not be for everyone, and I get that. The key is to find what it is that people will do, will enjoy and will contribute to either directly or indirectly. Every year, they have a St. Patricks Day party, because who doesn't love to drink?! They charge $75pp, they have food and drinks donated, the have bands and friends and fun, and they raise a BOATLOAD of money for CF. This year, they have over 500 people attending! That's over $37,000!!! ($37,500 to be exact!) Others are big into getting corporate donations, recruiting walkers to help raise $ (kind of like the pyramid marketing schemes, only in a good way) or doing letter mailing campaigns. People who have school age children do a lot of work with schools to raise money. One man has been working on getting corporate sponsorships from places like Papa John's, where a portion of all sales nationwide get donated to CF. Its incredible what people are doing! I need to spend more time talking to the people doing this so that I can broaden my reach.

I'll keep doing whatever I need to, whatever I can, to raise money for CF. You might not have time this year to walk, or the time or desire to host a fundraiser or any other type of event to raise awareness and support for CF. I don't have the time either. But I have the desire to have Drew around forever. I know that to ensure that CF doesn't win in our family, I need to make the time.

I got an email today with something in it that I wanted to share - "No matter how tired, discouraged, or overwhelmed, sad, or mad you might feel one moment, you will feel like a brand new brave girl after reaching out to another in kindness and generosity". How very very true. I've learned so much this past year and I think that I am a more kind because of it, and for that I will be forever grateful.

And as for the gutters, I'm probably more confused now than I was before talking to the 3 men who took up way to much of my time yesterday.

A shout out for your support

"It is the greatest of all mistakes to do nothing because you can only do little – do what you can.”
~Sydney Smith

Our campaign is still going strong. Help us out by donating today!!

This and That

The twins are 11mo. old tomorrow. ELEVEN MONTHS OLD! I mean I know time flies when you're having fun, but this is ridiculous. I feel like I blinked and it just happened. This was officially the fastest year of my life. They are still my babies, but they're going to be 1 in just one short month, and I can't believe it.

I had a really nice weekend. My parents were in town which allowed me some time to get out, run errands, drink a little more wine than I should without fearing the 7am wakeup call. I got out of the house by myself on Friday, with Martin on Saturday, and with the whole family on Sunday. The weather was a lot nicer than it has been and it gave that glimmer of hope that, despite all signs pointing to it, this winter isn't actually going to last forever.

We're about a week and a half into our fight against pseudomonas and I like to think we're winning. Drew is starting to sound a little better. He sure doesn't like the Tobi one bit, as it takes 30+ minutes to administer AFTER he completes the other 45min of breathing treatments and airway clearance. It puts a wrench in our plans some days when we want to try to get out of the house. Hopefully we won't be on it forever, so we're dealing. Lily has an ear infection now and is on antibiotics too. I swear that our insurance is investigating ways to boot us legally.

Great Strides fundraising is going well. There was a wave at the beginning which had me elated. I've put lots of energy behind this and am doing a few new things at a time. I have a few online sponsors now who I will announce at the beginning of March who are willing to donate a portion of their sales to Drew and Great Strides. I'm very excited about that. I'm also about to launch my mailing campaign. I'm realistically hoping for a 10% response rate this year, though I don't want to limit that. I secretly hope its 100%!

Its supposed to be 60 here on Friday. I'm trying to talk Martin into taking the day off and going to the zoo with me and the kids. He has off next Monday for Presidents Day so it would make for a great long weekend for our family.

That's all I have for tonight. Still love seeing donations and support for our team, so if you're interested in watching our video again or making a donation, its as easy as clicking right HERE.

It'll Happen

Its no wonder Drew isn't really crawling yet. I'm not terribly concerned about it, but I wish he was. He's getting frustrated that the girls get all the toys they want and he just has to sit there and yell until someone pays him enough attention to get him whatever he's yelling for. If we could just let him be, I'm certain that he'd be exactly where Lily is and i'd be complaining about having to run in three different directions instead of just 2. But I can't just let him be. Let me tell you what our days have looked like since probably about October. Everyone wakes up around 8am. We eat breakfast and bottles until 8:30. At that time, Sesame Street gets turned on and Drew gets all set up for his breathing treatments and morning airway clearance. This goes on until about 10, especially now that we are on Tobi which you aren't supposed to give until the airway clearance and all other meds are complete. 10am is naptime. If things go well, the babies wake up between 11:30-noon and eat lunch & bottles. This takes us until about 12:30. After a solid half hour of "play", its time for afternoon airway clearance and breathing treatments. These don't take quite as long because there are fewer meds. Naptime again from 2-4, this time for Ella too. I have about 2 hours to clean up from breakfast and lunch, and get in 1 other activity (today, blogging) before someone is up and ready for a bottle. From 4-6 there is nothing scheduled. Okay, let me rephrase. The only thing scheduled is "play" time with Drew where I try to build up some of his strength by helping him to stand behind a ball or go from sitting to standing or laying to sitting. He doesn't love it, but he needs to learn how to do it. And if I always baby him and do it for him, he'll never learn. So we work on it. Around 6pm, when Martin gets home from work, its time for dinner which I've either made during naptime or am pulling out of the fridge and reheating from the night before. At 6:30, Martin takes the girls to play and its time for Drew's evening breathing treatments and airway clearance. If we don't start by 6:30 there's no chance of being fed and in bed by 8. As long as the treatments are done by 7:30, we can get bottles and meds ready and administered, baths given if someone is smelling a little funky, and 3 little people all tucked in for a good nights sleep.

I know I've posted this story before. Its a fairly tight schedule, especially when he's "sick" and they want us to do the breathing treatments and airway clearance 3-4 times a day vs. the standard 2. We've been doing it 3 times a day since October, going up to 4 or more when he is really sick and not breathing well. We're hoping that with the end of the cold and flu season approaching that we'll be able to get back to 2 times a day. I don't know what we'll do with all of our free time!

So that, in my opinion is why Drew is not physically at the same level as Lily is. During all of that time that he is stuck sitting here hooked up to all of these machines, Lily is crawling and walking and climbing and playing with everything under the sun. He'll get there, I know he will. But right now, its kind of nice that I always know that I'll find him right where I left him :)

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.