Saturday, April 19, 2008

Great Strides 2008

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!

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!

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.

Tuesday, April 8, 2008

Good Girl!

Today was Taylor's 2 month check-up. She's doing great! She weighs 9 lbs. 10 oz. You can see in her face that she's starting to fill out a little. I had to increase her enzymes again from 1 1/2 to 2 per feeding. I've had to increase them a lot sooner than I did for the boys. So far it's working. I don't know what it will be like in the future. I hope that it won't become a problem for her. There is such a thing as giving her too many. I pray that there never comes a time when they aren't working for her, but we can't increase them...but we won't borrow problems from tomorrow to get through today!
We go to Orlando tomorrow for her CF check-up. I usually try to space out the appt.'s so that her pediatrician and the CF clinic appt.'s aren't back-to-back, but it just worked out this way. I'll ask more questions about her enzymes then. We will also get the results of all her blood work and chest x-rays. Most of this information will just be a starting point for the next tests they run. They do annual labs so they can see how things are progressing and have something to compare it to. Next years' x-rays will show if there was any mucous build up through the year.
I had Jackson and Lincoln with me at the Dr.'s today and at first they seemed to be doing really well, but by the time the Dr. got in there, Lincoln was screaming (he is SO over-tired from yesterday) and Jackson wasn't being bad, but he was a little noisy. Fun!
Yesterday, we went to Orlando to spend the day with friends of ours who recently moved to Georgia. We had a great time, but the kids are exhausted!!! They are all sleeping now...which is why I have a minute to blog! But, I think I hear Lincoln waking up!
Have a great day!

Saturday, April 5, 2008

Pictures

I've been using Winkflash to print my digital pictures. I'm trying to get caught up and at least get everything printed so that I can finish my scrapbooks...well, "finish" is probably not the right word to use! Winkflash does a quality print job and their prices are the lowest I've seen. Right now they are running a sale at 6 cents a print. You do pay shipping, but it ends up being about 9 or 10 cents each. Pretty good! I just ordered all of my pictures that I took in Feb. and March of this year. How many, you ask? 774! Yikes! Well...I took some of those. My mom took many of them and my Mother-in-law took many too! That's not normal for 2 months.

Just thought I'd share that with you all!

Tuesday, April 1, 2008

It's been awhile

Well, it's been a while since I last posted. It's not easy finding time to blog with 4 kids at home, all under the age of 6! But, I have a few quiet moments right now and thought I'd update you.

I took Taylor to the Dr.'s yesterday just for a weight check. It was not a scheduled appt. I just wanted to see how she was doing because we already had to increase her enzymes from 1 to 1 1/2 per feeding. That was awfully quick as she is just 2 mos. old. I called the CF clinic last week to find out more information about her need for enzymes and they reported that she is severely pancreatic insufficient. Most kids with CF do have malabsorption problems and it is because of the mucous that their bodies produce. It blocks the pancreas from releasing the enzymes that helps our bodies digest and process fat. That is why CF kids are typically skinny and even short. (You wouldn't know that looking at Lincoln. PTL!) So, the enzymes I give them before they eat or drink anything with fat in it, helps them to absorb that needed fat. I wish they had a pill I could take to help me NOT absorb the fat! The enzymes must be working because she weighed in at 9 lbs. 4 oz.! I haven't looked that up on a growth chart yet, but I know that's good. We go to Orlando next week for her next CF check up and they will give me print outs of her growth chart by length for age, weight for age and weight for length. I intend to ask the Dietitian (who is wonderful, by the way!) what my other 2 with CF scored with their pancreatic insufficiency because I want to compare them to Taylor. She scored a 6 on a scale where 99 is on the low end. SO...she's on the REALLY low end. It will be helpful to know what the boys are so that I can somewhat gauge how she'll do. Jackson had a few months in his first year when he struggled with weight gain. Lincoln never had that problem, though they did have me start him on formula at about 5 1/2 months because his weight hadn't increase over a 6 week period. He's never had trouble since then and he's a tank now!
Interestingly enough, as much as we hear about the increase in childhood obesity and so on, for a CF child, the bigger the better! I'm sure there is a cut-off point to that theory, but studies show that the CF patients who weigh more, are healthier. Thankfully, so far, Jackson and Lincoln will eat anything that resembles food, so it's been easy. Hopefully Taylor will follow suit! So far, she likes the meals she gets! LOL
Lincoln and Jackson had there CF check up about a month ago. Thankfully, it was while my mom was here and she was able to help me at the Dr.'s. That was a rough day! I've taken them both before by myself, but this time, they were both antsy and a bit hyper. I had forgotten to grab a stroller, so one of us had to hold Lincoln (all 27 lbs. of him!) and he would get squirmy, and fussy. Jackson was just getting into everything and not listening to me. Usually he does pretty well in that area...usually! But, he seemed to know that I was distracted, trying to listen to the doctors, and took advantage of that. From now on, they will have separate appt.'s...on different days! We have to drive to Orlando for the appt.'s, so I kept their appt.'s together for the sake of saving money on gas, but now that Taylor will need to go every 6 weeks (as they do in their first year), I can alternate the boys on her days. The boys go once every 3 months now.
But, the good news is that both boys got a good report from the pulmonologist and dietitian! They also see a social worker, (who we love!) and the CF nurse coordinator. It's usually about 1 1/2-2 hours from start to finish. Sometimes there is blood work or x-rays to be done too.
In fact...that reminds me...(BTW...I'm shocked that I have time to keep writing. Taylor and Lincoln are napping. Carter's at Pre-K and Jackson is playing nicely in his room!)...at Taylor's first appt. in Orlando, they had us do some blood work. I took her to the lab and there were two tech's there. One drew the blood while the other held and switched the viles that collect the blood. They had me hold her in my lap and steady her arm for them. I've been through it a dozen times with my other boys, so it was no big deal. But, they were having trouble getting all the blood they needed and by the time they decided they have to try again, some of the blood they had gotten already clotted. SO...this time, they had the lady hold Taylor, the man drew the blood and I switched the viles for the blood...about 4 or 5 of them. WOW! I've never been asked to do THAT before! It was actually kind of cool and probably better because when I was just watching them do it, I felt myself get a little woozy (sp?). I have been known to faint before when I was having blood drawn and I knew I wasn't getting to that point, but I did make a point to look away and think about other things. However, when I was the one collecting the blood, it didn't phase me a bit! I guess I was more focused on doing it right (as I didn't know what I was doing-though I've seen it done a hundred times!) and so I didn't get lightheaded or woozy (still not sure of the sp!).
I have said for a few years now that by the time my kids graduate high school, I'll have earned my own medical degree! Well, I have phlebotomy 101 down! Haha!!!

"Who Am I?" Awesome Video

Before playing this video, please scroll down to the bottom of the page and pause or silence my music player. Enjoy! This is awesome!!!

Music