Tuesday, May 31, 2011
I haven't had to much worthwhile to post about lately. We've been keeping super busy with play dates, lots of time poolside in the backyard, and even more time spent applying sunscreen for said time poolside. We're taking our longest stretch without seeing the CF doctors. I think its typical to see those doctors every 3 months, but with all the other fun stuff that complicates Drew, we go once a month. At the last appointment, we decided that we would go 6-8 weeks. [Knock on wood] we haven't had to make any sick visits since the last well check.
I'm still waiting on our grand total of money raised for this years Great Strides team. Hopefully within the next few weeks the numbers will be finalized and I can wrap things up. Many thanks again to all who supported us, and I hope we can continue to count on your support!
- Posted using BlogPress from my iPad
Thursday, May 26, 2011
"Dear CF Advocates,
We need your help! The latest budget proposals being debated by Congress would dramatically cut crucial funding for the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). These agencies play a key role in our effort to research and approve new CF Therapies. We need to keep the pressure on Congress to prevent these cuts!
Please send a message to your Members of Congress opposing these cuts.
If the FDA faces heavy budget cuts, it will take much longer to move promising potential therapies like VX-770 into the hands of patients. That is added time that many CF patients and people with other diseases cannot afford.
Similarly, the NIH performs crucial CF research. They are currently creating a new center to help develop scientific discoveries into new medicines.
If the NIH faces significant budget cuts, these breakthroughs may never reach people with CF and other diseases. These potential cuts jeopardize our goal of finding a cure for CF.
Please click here to send a pre-written message to your Members of Congress opposing these cuts.
Thanks for all you do!"
I'm asking all of you to be my advocates. I'm asking everyone reading this- people who obviously care about CF in some capacity, be it for Drew, their own children, family members or friends - to click on the link and send a letter to congress. The link will automatically draft a letter to your legislators, you don't have to find them or even know who they are. There is a form letter included. You can personalize it, or you can send it as is. It takes less than 2 minutes to do the whole thing. It's our letters to these decision makers that make the difference. They are representing us, and they need to know what's important to us. This is important to me, to us. And the more people who do this, the more the message will be heard.
Finally, on the advocacy note, I need a few people who I can rely on to help me with this stuff. We need advocates in all states as this is an important issue nationally, but I need a few people from Ohio who will be able to do simple things like this with me when they come up. As a CF parent, I love getting the latest news and information firsthand before some of the issues are even voted on, and being able to voice my thoughts and opinion on them on behalf of my son. Will anybody reading this advocate with me? When people ask me what they can do to help, this is what I want, this is what you can do to help me.
- Posted using BlogPress from my iPad
Tuesday, May 24, 2011
This weekend we're having a yard sale and that will be our last big donation to this years walk. We've received a ton of donations from friends and neighbors and strangers hearing about our yard sale and we have it all piled up in our garage. I'm hoping for great weather and a big success. I think i'm going to bake some of my special choco chip cookies (not to toot my own horn, but if you haven't had them you'd love them, seriously) and brew some coffee and sell that too. After Saturday, I'm going to plot our fundraising activities out for the next year, take a break, and focus on my advocacy efforts. I'm still looking for people to help me advocate - for their own kids, for all kids, for Drew - and its really something small and simple that can have a huge impact.
I'm not sure if I ever mentioned that shortly after we found out that Drew had CF, we learned that our neighbors sister also has CF. Well, his sister, Rosie, will be turning 50 this year. Isn't that amazing!! Her mom lives next door and is always stopping by to tell me about how hard she works to keep healthy. I know Rosie is proud of her mom for helping her to live the life that she is, and I know her mom is equally as proud of Rosie for managing her disease with a positive attitude. I hope that some day I can write that about Drew. Right now, i'm proud that he is 1 and that he sits through his breathing treatments every day without complaining, and that he takes all of his meds all day everyday with easy. I'm one proud mama and I'm hellbent on finding a cure.
Here are some pictures from our walks...
Sunday, May 22, 2011
Anyway, the walk in Cincinnati this year seemed a lot bigger than last year. Whether it was or not I'm not sure. The goal was to raise $400,000. I hope we exceeded that. Ill update when I know for sure. We had a nice little group of our great friends there to walk with us and it was amazing. More than anything i'm glad that I took Drew. Once we got there the anxiety died down. There were so many people there that no one even really bothered with him, which is always my preference. We had gone to the zoo the night before because it was Zoo Members Night and Barney was scheduled to make an appearance. It was just the 5 of us that went, something that rarely happens. There always seems to be something else going on that prevents us all from doing things together as a family - frankly, the hassle of it all is probably the biggest - but when we do get out we have fun. ( I'm going somewhere with this, bear with me). When we got to the amphitheater to see Barney, Drew freaked out...it a good way! He was jumping up and down and clapping and squealing with delight. My shy guy might just not be so shy after all, I've just kept him sheltered. He loved every second of the show and every minute we were at the zoo. Being outside and left alone helps my germaphobia, but what helps it even more is seeing how much he loves doing the same things that his sisters adore doing as well. At the walk, we got the same behaviors. He wanted out of the stroller and wanted to play with Ella and Lily. He wanted to hold our hands and walk around and explore everything around him. And I was so happy to let him do all of that.
It was a hard winter, because every time we got a cold we ended up sick for 2 months, and then another cold would move in. We didn't go anywhere for months, and even now, the thought of a germy playground skeeves me out quite a bit. But I'm starting to see that not all germs will land him in the hospital. That he will be just like you or I and build up some resistance to common germs. Sure, there are many things that will continue to be dangerous to him, but that's what my friend Dr.Clancy is working on (he doesn't know we're friends yet). As a parent, when you see your kids having fun, it brings joy to your heart. It was a fantastic weekend. Between the zoo and the walk, a friends birthday party and a family trip to Graeters, this weekend was just what the doctor ordered.
Hopefully I'll be able to share some more about our walks and our fundraising as the numbers roll in. My Mothers Day present was an iPad [because if you know Martin you should expect that any gift will be both electronic and something I've been talking about so much that he will do whatever it takes to shut me up] and it's taken my household productivity to an all time low. Everything from laundry to blog updates have gone to the wayside as I spend every free minute discovering the new and very cool things that the iPad can do. That and the fact that the weather has been so nice have kept me from my website that I do want to keep up to date.
Thank you all again, everyone who helped us to meet and exceed fundraising goals this year, and especially to those who were there by our side as we walked for hope. We hope we can count on your for continued support. And I promise to post pictures from all of our walk...just as soon as I can figure out how to do it on the iPad!
Thursday, May 19, 2011
We found ourselves at the pediatrician again today. Drew was up all night Tuesday with a fever that he jus hasn't been able to shake. Finally went to the pediatrician this afternoon and he's got an ear infection. Thank God it's only an ear infection. It's hard for my mind to not go to the worst case scenario. Gourmet Club helps that :) An ear infection is not nothing, but it's something that I can treat with an oral antibiotic from my house that I can get from CVS on my way home from the doctor. I dot have to spend hours on the phone today with insurance explaining why he needs it and figuring out how I can get it the quickest possible way for a reasonable price. It was the easy answer and it made my day better knowing that it wasn't something worse.
The walk is finally here! Tomorrow our Cincinnati, San Francisco and Philadelphia teams have their Great Strides walks. To date, our teams have raised about $18,000. The top walker in the country raised almost $100,000. That's my goal. Like not my personal fundraising goal for next year, but that's my goal. I want to raise money all year long for Drew. I want to find big donors and raise big money. And I want help. I want my friends and family to help me reach this goal. Reaching this goal means newer medicines faster. It means the search for the cure will come to an end because a cure will have been found. I have to do this.
If you have already donated to my walk, I thank you, sincerely. If you haven't, I'd like to ask that you consider it. The reality of CF is not something that I want to talk about or dwell on or discuss, but it doesn't make it go away. What will make it go away is a cure, and the only way we're getting there is by helping to raise money. Here's one more look at our video. Wish us luck tomorrow at our walk. I hope that every location can announce that they reached or exceeded their goal, whatever it might be. Thank you thank you thank you!!!!
Sunday, May 15, 2011
Friday, May 13, 2011
Wednesday, May 11, 2011
I haven't had a minute of downtime in the past week to even post what I've been up to. Late last week, we decided that Ella and I were going to drive back to Pennsylvania for the Sicilian Dinner Buffet that friends of ours we're having for Drew. I have to say that I am SO glad we went! It was an incredible night and we raised close to$ 3000 for our team. The outpouring of love and support from our family, friends and complete strangers was unparalleled. I have pictures to share but i'm sitting in my car typing this on my phone while I wait to pick Ella up from school, so I don't have them with me.
Our walk is only 2 weeks away and our fundraising is going so well. Our team has raised around $15,000 and i'm still hoping for more.
Hopefully later this week I can find 30 min to sit down and write more about all thats been going on!