We had our Great Strides walk today in Lakeland, FL. This walk is to raise money for Cystic Fibrosis research.
Our team, "Walk for the Walkers" had over 30 people (including children). We raised over $1,600! The entire group of walkers, including all the other teams, raised $18,000!!!
The CFF is well known for being very responbible with their money as 90 cents of every dollar raised goes towards research. And, it's making a difference! No cure yet, but we're on our way! Many of the studies have led to treaments that help make living with CF easier and all treatments have lengthened the lives of all our precious children.
Thank you again to those who supported us today!
Saturday, April 19, 2008
Friday, April 18, 2008
Great Strides
Tomorrow is the Great Strides walk in Lakeland, FL. I have a team of about 25 walkers and we've raised about $1500! I'm so thankful for the support my friends at Cornerstone Baptist Church have shown me. People really got on board and excited about it and it just shows me that my kids are important to them.
Many of my friends and family from out-of-state have donated as well and I appreciate you all!!!
Since this is our first walk, here in FL, and we've done so well, I'm excited about what we can do next year. If everyone on my team were to raise $150 each we could get to $3,750! That would be amazing!
Next year, I'll start working on things sooner. I did start letting people know about it back in October, but then didn't do much with it between then and now. We can do little fundraisers prior to the walk to help raise money for the team, as well as individual and corporate donations.
Periodically I go on the cff.org website to see how research is coming and it's encouraging to see that many of the research studies are showing promising results. Nothing that is a cure yet, but more treatments that can help tremendously to lengthen lives and add quality as well.
THANKS FOR ALL YOUR SUPPORT!
It's not all about the money though. Those of you who pray for my kids and the search for a cure are doing as much or more to support CF research!
THANK YOU! THANK YOU! THANK YOU!
Many of my friends and family from out-of-state have donated as well and I appreciate you all!!!
Since this is our first walk, here in FL, and we've done so well, I'm excited about what we can do next year. If everyone on my team were to raise $150 each we could get to $3,750! That would be amazing!
Next year, I'll start working on things sooner. I did start letting people know about it back in October, but then didn't do much with it between then and now. We can do little fundraisers prior to the walk to help raise money for the team, as well as individual and corporate donations.
Periodically I go on the cff.org website to see how research is coming and it's encouraging to see that many of the research studies are showing promising results. Nothing that is a cure yet, but more treatments that can help tremendously to lengthen lives and add quality as well.
THANKS FOR ALL YOUR SUPPORT!
It's not all about the money though. Those of you who pray for my kids and the search for a cure are doing as much or more to support CF research!
THANK YOU! THANK YOU! THANK YOU!
Taylor's new meds
I mentioned in my last post that Taylor would go to Orlando for her CF clinic on Wed.
Here is her update!
Her weight (9#s 10 oz.) was the same as at the pediatrician's. Which is no surprise since it was approximately only 24 hours later. But, for me, this is very good news because now I know that the scales are in agreement and so when we do weight checks, I'll know that what the scale says she's gained is accurate.
Overall she's doing well. The dietitian said that increasing her enzymes from 1 1/2 to 2 was perfect for her weight. The pulmonologist said her lungs sound great (clear of mucous), and as far as growth, she's typical for my kids. A little short, but weight for height is good.
They did a throat culture to see what might be growing in her lungs. It's not 100% accurate because there could be something in her lungs that isn't in her throat, but at her age it's the best way to get an idea of what's there. When she's older, they'll have her cough first and that should bring up whatever's in her lungs. Unfortunately, we just found out that she cultured for Pseudomonas, so we have to put her on a nebulized anti-biotic, called TOBI (Tobramycin). Jackson didn't have to be on this until he was a year old. Lincoln has never been on it (Praise the Lord!). So, it's disheartening to have her on it and only 2.5 mos. BUT...it proves to be a positive part of keeping CF lungs healthy longer. I will have to do this 2x's a day. The medication cost over $3,000 for a 28 day supply. We're thankful that insurance covers it! Most treatments with TOBI are 28 days on, 28 days off and then 28 days on again to complete a cycle. But, we will wait to see what her next culture shows to determine if she has to do the 2nd 28 days. Because it's an anti-biotic, I prefer we use it as little as possible.
Here is her update!
Her weight (9#s 10 oz.) was the same as at the pediatrician's. Which is no surprise since it was approximately only 24 hours later. But, for me, this is very good news because now I know that the scales are in agreement and so when we do weight checks, I'll know that what the scale says she's gained is accurate.
Overall she's doing well. The dietitian said that increasing her enzymes from 1 1/2 to 2 was perfect for her weight. The pulmonologist said her lungs sound great (clear of mucous), and as far as growth, she's typical for my kids. A little short, but weight for height is good.
They did a throat culture to see what might be growing in her lungs. It's not 100% accurate because there could be something in her lungs that isn't in her throat, but at her age it's the best way to get an idea of what's there. When she's older, they'll have her cough first and that should bring up whatever's in her lungs. Unfortunately, we just found out that she cultured for Pseudomonas, so we have to put her on a nebulized anti-biotic, called TOBI (Tobramycin). Jackson didn't have to be on this until he was a year old. Lincoln has never been on it (Praise the Lord!). So, it's disheartening to have her on it and only 2.5 mos. BUT...it proves to be a positive part of keeping CF lungs healthy longer. I will have to do this 2x's a day. The medication cost over $3,000 for a 28 day supply. We're thankful that insurance covers it! Most treatments with TOBI are 28 days on, 28 days off and then 28 days on again to complete a cycle. But, we will wait to see what her next culture shows to determine if she has to do the 2nd 28 days. Because it's an anti-biotic, I prefer we use it as little as possible.
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