Our big 4th Annual Great Strides Walk for Cystic Fibrosis was this past Sunday and it was AMAZING!! We had about 150+ walkers and raised about $20,000 dollars!!! WOOHOO!!!! Our first year we only had about 50 walkers and only raised about $5,000...I'm so happy how our walk has grown and multiplied!! The more walkers=more money raised=the closer we are to a CURE!!! :)
Our first year, everyone was able to stand under the pavilion and I would just stand on a table to talk, but this year there were so many walkers, that the only thing that would work was the loud speaker from the Ambulance:) And then Officer Cruz was nice enough to start the walk off with his siren! That was pretty cool! Maybe next year I'll see if Lil' Chris can push the button, that would be neat:)
This year was the first year I had to do all the announcements and everything, b/c Nate from the foundation had to go to another walk. I didn't mind doing it, but I felt bad that I wasn't more prepared. I got up there and completely went blank on a lot of our sponsors:( Next year I will def make a list and be sure to mention all of our sponsors!! So... since I can't go back in time and add them to what I said...I'll just mention them now on my blog(please feel free to share this blog post;) lol....
BIG THANK YOU to my fellow CF moms Samantha, Denna, and Alma for all their help!! Denna made little goody bags for all the kids, and made BEAUTIFUL signs for all the CF kids so the walkers could read a little bit about who they were walking for and why. Samantha got LOTS of prizes and I'm happy to say that I actually ran out of raffle tickets!!! That's the first time EVER!!! I still had stuff to give away, but there were no more names in the bucket!! WOW!!! That's awesome!! Thank you Alma and team for all the yummy cookies!!
BIG THANK YOU to Nate for bringing and setting everything all up, and to everyone else who helped out in setting up too...my husband, Spencer, Oma, Opa, Jessie, and Kevin!! I was so thankful that Kevin volunteered to take pictures with his awesome camera this year!! THANK YOU KEVIN, you're the BEST!!! I will post the pictures when I get them:)
THANK YOU to our CFers who we walked for...Lil' Chris, Daniel, Jack, Aden, Sophia, and Aubrey!! You guys did a GREAT JOB wearing your Hawaiian leis the whole time and staying away from each other, because of the risk of cross contamination!! So proud of you all!!
SPECIAL THANK YOU to all who walked for "A Cure 4 Lil' Chris!!" I would name you all, but there were so many, about 80!! That's AWESOME!!!;) We had lots of family, friends, co-workers, neighbors, and classmates!! I'm sorry I didn't get to go around and talk more with you all. You all brought tears to my eyes with how many showed up just for Lil' Chris!! We can't thank you all enough for giving up a Sunday towalk, and for all your generous donations!!
BIG THANK YOU to my sister and her kids for driving all the way from NC to walk for Lil' Chris:) We had so much fun at the walk, at Put-in-Bay, and Acres of Fun mini golf!! Can't wait to see you guys again!!
Thanks again everyone who walked, donated, or sponsored our walk!! It sure was a SUCCESS!!! More pictures coming soon!!! :) M
PS. Update on Lil' Chris' CF clinic visit this last Wednesday coming soon!!
Reflux- 1 Prevacid Capsule(15mg)once a day to help enzymes work better
Hill Rom Vest 2 times a day for 30 minutes each
-Frequency 10 Hz for 10 min, then switch to 12 Hz for another 10 min., then switch to 14 Hz for another 10 min. two times a day
-Pressure set at 5 for first 20 min, then 4 for last 10 min.
-Currently at 1,850+ hours total (been using since he was 11 months old) (Got a new machine, so lost count now.)
-Upped his Creon 6000 enzymes from 3 to 5 on 1/1/13 due to stomachaches. Switched to Creon 12000 on 1/29/15. 2 with each meal and snack(7yrs old).
-He started his first nebulizer, Pulmozyme, on July 1, 2012 at 5 yrs old. He uses Albuterol inhaler and the Acapella when he has a bad cough.
-His first TOBI treatment was on 11/5/12, b/c he cultured Pseudomonas for the first time:( Also first time taking Cipro. 5 yrs old.
-Started Claritin for allergies on 5/8/13
He has never had any sinus problems... Praise the Lord!
Last CF Clinic Visit: 12/17/14 Weight: 57 lbs. 5 oz. Height: 52 inches BMI: 30 percentile PFT: 111/110
Next CF Clinic Visit: 5/6/15 at 7:50am
We are VERY blessed as to how well Lil' Chris is doing and has never been hospitalized. Please pray with us that he will continue to do well and stay as healthy as possible.
Search My Blog for Anything =)
Hi! I'm a CF Mom (M) and my son is Lil' Chris. He is 7 years old. He was born with a fatal genetic lung disease called Cystic Fibrosis. This is where I keep a record of EVERYTHING(including lots of pictures and videos:) My sister(D) and I started this blog to not only keep a record of everything and keep family updated, but to interact with other CF families as well. That way we can all help each other out by sharing useful information:) I've learned soooo much already and so can you! Come along for the ride! I try to update whenever I can=)
This is a great spot to start out on our blog so you know our story...Start Here
PS. Lil' Chris has a lil' sister named Ayla(pronounced long A-luh)! She is 6 and does not have CF and isn't even a carrier.
11/12 Pseudomonas 1/13 Pseudomonas 2/20/13 NORMAL!!!! WOOHOO!!! 5/8/13 NORMAL!!! YEA!!! 1/8/14 NORMAL!!! OH YEAH!!! He cultured a couple diff things in 2014, but nothing to worry about.
9/12/09 Start Augmentin for 21 days for a cough from a cold.
3/9/10 Start Augmentin for 21 days for a bad cough from a cold.
5/3/10 Start Bactrim for 14 days for bad cough from a cold.
7/12/10 Start Augmentin for 14 days at 3ml 2x a day from a cold again.
9/15/10 Start Augmentn for 14 days at 3.5 ml 2x a day for a bad cough following a cold.
1/11/11 Augmentin for first ear infection
2/10/11 Started Bactrim for wet cough...no cold.
9/6/11 1st time on Omnicef for bad cough-from cold/allergies
1/30/12 Bactrim for 15 days 12.5 ml - weird cough after Disney
3/30/12 Started Azithromycin 5ml 1st day and then 2.5ml for next 4 days-wet cough after cold/allergies
9/17/12 Amoxicillin for Strep throat
10/24/12 Omnicef capsules once daily for 21 days for wet cough from cold. Also Flonase 2 sprays 2x daily**update**=did not finish either. Cultured PA, so stopped Omnicef to start Cipro and TOBI. Will do Flonase every other day.
11/5/12 Cultured Pseudomonas A, so started Cipro 250mg 2x a day for 21 days AND TOBI for 28 days(first time)
1/16/13 Cultured Pseudomonas again, so started Cipro and TOBI for 28 days again. (no cough)
12/29/13 Bactrim for wet cough, possibly from allergies. 14 days 3tsp 2x a day.
NONE IN 2014 YEA!!!!
Lil' Chris' Cold/Cough List
9/7/09 Runny nose for 2 days, then a cough. 10/21/09 Runny nose, only coughed when doing Vest. Up practically all night the last 2 nights. 12/28/09 Started a really weird sounding cough, no runny nose. Woke up kinda wheezing the next morning and hard to breathe. Cough lasted about 5 days and then went away with no antibiotics thankfully. 2/27/10 Started a runny nose and has had a dry cough for about 2 weeks. 3/2/10 Started wet cough and nose really plugged up and having drainage. 5/3/10 Cold and cough. 7/8/10 Cold after vaca, then turned into bad cough. 9/6/10 Stuffy nose/drainage=cold;( 9/10/10 Cough started, turned into a wet cough on 9/11 2/10/11 Has had a cough for about 2 weeks turned into a wet cough. No cold, but got headaches above right eye. 4/14/11 He caught Ayla's cold after a mini vaca w/o Vitamin D 6/6/11 Woke up with weird sounding cough which turned into a wet cough. 8/2/11 Cold & dry cough after 2 days of VBS and Church 8/5/11 Cold gone, but has wet cough now 9/6/11 Cold/Allergies turned into wet cough. 1/24/12 Weird barking cough turned into wet cough at Disney 3/21/12 Wet cough from cold/allergies-80 degrees in March 10/17/12 Started wet cough from cold. 3/7/13 Cold, no cough 5/8/13 Tiny productive cough, but we think b/c of allergies. was given Claritin and cough stopped, but still stuffy nose in AM. 6/29/13 Tiny productive cough, maybe allergies. Did excessive treatments and it went away without antibiotics:) 8/30/13 Cold, but no bad cough:) 12/20/13 Productive Cough and stuffy nose(got new Vest machine with cough pause option). May be allergies??? Crazy weather lately...60's, then 20's, etc. 12/29/13 We cough continued, so started Bactrim 2014 No major coughs, just few days after colds.
Fever on July 24th 2009-after being on Augmentin for 3 days for a cough. Fever on Sept. 14th 2009-after being on Augmentin for 3 days for a cough. Fever on May 31st 2011-after throwing up off and on, but not from soy protein??? 9/17/12 fever from Strep throat 100.2 2014-2015 Winter: 3 24 hour bugs, fever and throwing up