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.

I'm holding on

Just when you think you have a handle on things...

All has been well in the Moore household for 2+ weeks. Ella started coughing a bit this weekend so I figured she was just getting another cold which would inevitably wreak havoc on the entire house within a few days. Drew had a CF appointment yesterday (well check and all went very well!) but I couldn't take Ella there with me if she wasn't feeling well for a couple of reasons. First, I know enough to know that you don't bring a girl with a cold to a doctor where there will be other kids, like Drew, who could get very sick if they caught that very same cold. Second, flu season hospital restrictions are in place and siblings aren't allowed in the hospital unless the are older than 14. So with a few morning hours to figure out what I was going to do with Ella, I packed up a sleeping back, the DVD player and a few toys and dropped her off at work with Martin. She wasn't acting like herself, just kind of moping around and coughing a bit. She was there for about 3 hours while I was at the doctor with Drew and Lily. I picked her back up and all 3 kids zonked out in the car. I got me some Starbucks and drove us around for an hour + until someone woke up, and we made it home. It was a LONG day.

We got inside around 4pm (had left the house just after 11am, and prior to that spent the morning preparing to leave the house). Ella was still not herself - very whiny & cranky. She was crying about every little thing. I picked her up to give her a hug and she was burning up. I took her temp and it was 104.2!!! Holy crap that's high! I called the pediatrician and they wanted to see her. Seriously? We literally just walked in the door. So we packed back up and headed out to the pediatrician. The waiting room is filled with sick kids. I have a mask on Drew and Lily is screaming in the stroller because she wanted to get out and play, but I wasn't about to let her go crawling around on the floor at the pediatrician at 5pm after a long day of sick visits. Martin met me there just after 6 and took the starving babies home. They had missed lunch since we were at Drew's doc, (don't worry, i gave them extra large bottles), but they couldn't miss dinner to. Ella and I finally saw the doctor at 6:50. She was tired, I was tired, and he told us he thinks shes got the flu. He said there are a few strains of flu going around that weren't captured by the flu vaccine (fantastic!) and that all he saw all day with kids with the flu. (flashback to lunch yesterday when Ella stuck her lollipop in my mouth when she didn't want it anymore. or when she sneezed on Drew and commented on how she got him wet.) This is going to be a fun week. He thought she might also have strept because her throat was so red so we got the test and we're waiting to hear back on those results. The good news is that tylenol seems to break the fever and improve her mood. The babies (knock on wood) are currently exhibiting no signs of being sick. We'll see how this shakes out.

In other news, a year and a half after we finished our kitchen remodel we finally got around to putting up our backsplash. Its not quite finished yet. We still have a few tricky corners to work around and then have to grout, but what is done looks nice. We went with 3x6 inch white subway tile, but put it up vertically vs. the normal horizontal way. I love the way subway tile looks, but I was looking for something a little more modern than the standard layout. I think we achieved the desired look.

I'm officially launching our Great Strides Campaign on Feb.1. All of the details will be on here, on FB, in your email and your mailboxes. I'm warning you now, you will be bombarded. I'm hoping for something big this year. There is so so much that can benefit from funds raised through the Great Strides walk - number 1 being Drew. I hope everyone reading this can help :)

I read a quote online today that I liked quite a bit: When you reach the end of your rope, tie a knot and hold on. FDR said it. I'm holding on.

Chili's Fundraiser

A friend of mine in Cincinnati, who has a daughter with CF, has organized a fundraising event at Chili's restaurants nationwide. A portion of all sales, between 6-8 pm on Tuesday, April 26 will be donated to the CF Foundation. Unfortunately its not just happening at all Chili's - it has to be set up to happen, and this is where we could use your help. All you need to do is to find a Chili's in your area, get the address, the name of the manager and the phone number and email it to me. I will get that information to the woman organizing the event, and she will mail you the non-profit paperwork. Once you receive that paperwork, you would take it back to the manager and this will make your Chili's a part of the event. The more Chili's that participate in the event, the more money we can raise for the CFF. Thanks in advance for any help you can provide!

The Cure Around the Corner

Almost every time I open my blog, the song Blackbird starts playing. "Blackbird singing in the dead of night, take these broken wings and learn to fly...".. It just seems to perfectly fitting. For Drew and for me. This certainly isn't the life that I had imagined, but at the same time I really can't imagine it any different. I cannot believe all that Drew has overcome this year. I can't believe that hes almost 10 months old...almost a year! Frankly, I can't believe we survived either. Twins = no fun whatsoever for about 8 months. Not even a little bit. But to look at Drew today, to see his smiling face and his will and determination to do the smallest of tasks - pick up a cheerio, wrestle Ella for his monkey, grab back the toy that Lily stole from him - it makes my heart smile. That boy takes it all in stride. He's not healthy. He's got funky lungs. He's got extra mucus in those funky lungs. But he takes every one of his many breathing treatments like a champ. I don't know many other 10mo. olds who would sit still for 45 minutes with a mask strapped to their face and not even try to pull it off. Certainly neither of the girls could handle this. But Drew is different. Hes so low maintenance. And hes such a momma's boy (and i secretly LOVE it). He'll melt your heart with his smile and his glowing big blue eyes. Its truly unbelievable to look at him today and picture where we were last March.

I'm getting all reminiscent as I put together our plan for this years Great Strides walks. I made a video (have Kleenex nearby) and I've written some letters. I want everyone to know how personal it is to us, and how much a donation means not only to us but to the thousands of other kids and adults struggling with CF everyday. The CF Foundation (and I've said this before) relies on donations alone - donations from me and from you and from events like Great Strides and whatever corporate sponsorships they get - because CF is not federally funded. Research is what Drew needs. Research is what is going to find a cure for this. They are so so very close. A cure means no more breathing treatments for Drew. A cure means not having to take a handful of pills before every bottle or meal. A cure means that he lives the same life as Ella and Lily and your sons and daughters. But the government does not provide any funding toward such a cure because this disease only effects 30,000 people in our country. It makes me so angry when I think about that. THIRTY THOUSAND LIVES ARE AT RISK because there is not enough money to support the life saving research that will find the cure. They are so close, seriously. Look at this information from the CF website:

The Cystic Fibrosis Foundation’s key metric for measuring success is our drug development pipeline. Our mission is to develop new therapies and a cure for cystic fibrosis. To achieve this goal, we need to have a broad range of potential drugs in development that attack the disease from every angle because many drugs may never make it to market.

CF is a complex disease and therapies must target problems in the airways and the digestive system. In the CF drug development pipeline, there also are promising new therapies designed to fix the cause of CF — a faulty gene and/or its faulty protein product.

The CF Foundation seeks to increase its odds of success by keeping this pipeline “stocked,” closely evaluating and tracking the progress of each therapy as it moves through development and — at the same time — pursuing new opportunities for future drugs to be developed.

Below is a "snapshot" of those potential CF therapies that are currently in development as of January 10, 2011.

Let me tell you quickly what some of this below means before you look at it. Gene therapy is what they believe will cure CF. There is a cure for CF. Doctors and scientists have found a way to correct the faulty gene. They have not yet found a way to get it into patients and stick. CFTR Modulation essentially corrects the basic defect of CF, allowing chloride and sodium to move properly in and out of cells lining the lungs and other organs. In 2012, some of these drugs will become available to patients. In 2012, if enough support is raised for the CF Foundation to continue their research and clinical trials, Drew may be able to receive these medications and be symptom free. He will not be cured, but he will be better. This is how close we are. You can read more about this on the CFF website, or by clicking here.

Stay tuned for the rollout of our Great Strides campaign. I'm thinking the beginning of February so that we have 3 good months of fundraising. And just so you know, if you ask me how you can help, I will give you a LIST of ideas :)

GREAT NEWS!!!!!!!

I just got a call from our new prescription insurance company letting me know that my request for an exception has been approved and we can have Drew's prescriptions filled through the CF Services Pharmacy at NO CHARGE to us FOR AN ENTIRE YEAR!!! I publicly take back all of the mean things I said about them in my prior post. I'm so excited and happy for a couple of reasons. First, I know that Drew will get what he needs when he needs it. Second, all of the time that I would have spent fighting with insurance can now be spent playing with my little loves. I'm so grateful and I'm SOOOO freaking happy!!!!

Moving Past Survival

This afternoon I went to lunch with some old friends, and it was so great. I feel like for the past 9 (almost 10) months I haven't done much. Its kind of ironic to say that since I haven't had a wink of free time, but everything I've done has been for survival. My goal each day is simply to survive until the next. So far so good. But I miss randomly going to lunch with my friends. I miss packing the kids up and heading to the museum or over to a friends house. And I'm realizing how just how much I missed it because I've finally gotten to the point where I'm able to do some of it again. Yesterday morning after I dropped Ella off at school, I went shopping with the twins. Is it easier without them? Sure is. But its possible to do it with them. Today me and the kids made it to lunch and had a really nice time. It took damn near all morning to get ready, but it was totally worth it. I do miss being able to focus. With all 3 kids with me, even if I'm having a conversation with another adult, I feel like I am scanning "the crowd" to make sure no one is falling out of a high chair, pulling gum off of the underside of the table, or choking on a cheerio. But I'm feeling like we're starting to move past the "survival" phase of having twins and into the fun phase (said she who will soon have two walkers going to two different directions). It took long enough!

I will be very happy when the germy season is over. The past couple of weeks, dealing with the intense colds that swept over our family, was so uncool. Its hard to take the twins to many places for a number of reasons, but at the top of the list being the fact that they put EVERYTHING into their mouths. I read that one sure way to avoid getting sick is to not touch your face. Most germs aren't airborn; they get into your system through your eyes, nose and mouth. Even when I focus on not touching my face, its hard! And for the kids - forget it. I try to wipe hands all of the time with antibacterial wipes, but its just impossible to hit it 100% of the time. By this time next year I am hoping to be able to teach them a little bit better about putting things in their mouths. (the best laid plans, right?!)

We were asked to be a part of the Finest Young Professionals CF Fundraiser again this year and happily obliged. I don't know who we will be paired with yet but I'm happy to share our story. I'm also working on our campaign for Great Strides. The walk in Cincinnati this year is on May 21st at 9am. I hope some of you reading will be able to walk for Drew, either here with us in Cincinnati or at a walk in your town. More to come...

New Year, New BS

Its been so long since I've had the time to sit and update this blog, but at long last, here I am. I had great intentions this afternoon. The cleaning ladies came this morning so I figured that once I put the kids down for a nap I could make myself a cup of coffee and relax for the hour or so that they're all quite (or at least otherwise contained). Then at 11am the phone rang. It was a health advocate with our new insurance asking if there was anything they could assist with. Great timing! I was meaning to get on the phone to start sorting out all of the mess that a change in insurance would surely bring. She was useless, as was the woman she transferred me to. Five hours later (that's right, FIVE) things are still unresolved. They want me to use their mail order pharmacy but I want to use the CF Services Pharmacy because, HELLO, its FREE. Drew's secondary insurance coverage from the state of Ohio (BCMH) picks up the co-pays, and let me just tell you that the co-pays on A TON OF MEDICATION is A TON OF MONEY, so its a big relief. But round and round we went, on the phone with dozens of different people, some not understanding what I was asking (though I don't exactly know how I could have been more clear) and some frankly just not caring; they weren't budging. I finally (read: at 4pm after spending FIVE HOURS ON THE PHONE) was able to get a fax number where I could submit an appeal and ask for an exception to be made. The lovely woman who finally broke the code of silence and gave me the number more or less assured me that my appeal would never go through, but wished me the best. We'll see.

So that's how I spent this afternoon. I suppose in lots of ways it was better than how I had spent many of the last few weeks with endless breathing treatments and airway clearance trying to keep Drew breathing well and at home vs. in the hospital. We did it! We kept him home! He was a pretty sick little dude for just about 2 weeks. He was "sleeping" with us, coughing all night long, and working so hard for every breath. I told the doctors that from my perspective there were 4 things that he needed to get better: rest, good nutrition, airway clearance, and antibiotics. At home he was getting all 4 of those, and they agreed. There was nothing different that they would have done in the hospital, other than monitor his breathing around the clock (and trust me, I was already on it.) It wasn't fun, but with two courses of steroids and two different courses of antibiotics I (knock on wood) think we are healed. The antibiotics end tomorrow and it will be the first time in almost 10 weeks that he won't be on antibiotics. In just 8 days we will also celebrate having been hospital free for three whole months! I know it doesn't seem like much, but its the longest stretch of time that our family has spent at home together since the twins arrived, so its kind of a big deal to me.

We have another bronchoscopy scheduled for the beginning of February. I might as well just bend over because I'm certain that insurance will be a pain in my ass about that too, deeming it "not medically necessary" or something ridiculous. I'll try to be positive. The purpose of this bronch is to see if there has been any change in the way his airways look. They are expecting things to either look the same or better. The malacia should start to go away sometime in the next year which would be a huge win for us. We're not sure if his "weird" airways are going to remain weird looking or what effect they really have on his ability to clear secretions. Its really just going to give his doctors the chance to see what's down there, structurally, so that they know what they're dealing with if he gets sick again. They all think that this past couple of weeks was really just nothing more than a cold like everyone else in our family had, but that between his extra thick mucus, floppy airways from malacia and abnormal shaped lungs, its really hard for him to fight even the smallest of infections; his airways just can't handle it. Things were not good. I hope we don't have to do that again.

I cannot believe that they twins are almost 10 months old. Seriously, where did the year go! I'm going to have a mini-celebration for their birthdays, mostly with family, but I want to keep it small. Its almost time to start planning for Great Strides again. Last year our team raised over $10,000, and that was in just 1 month. The twins were born in March. I learned what Great Strides was in April. And in May we all walked. It was absolutely incredible, and this year I hope to blow that number out of the water.

That's all the time and thought that I have to offer right now. I hope that everyone had a wonderful Christmas - we sure did. Stay tuned for the compelling conclusion of Erin vs. Big Insurance - its sure to be good!