Only ONE WEEK until our 5th Annual Great Strides Walk for a CURE for Cystic Fibrosis!!! I'm so excited!! I can't wait!! If you haven't registered yet or donated, it's not too late!! It's on Sun May 4th, check-in is at 11 and the walk begins at noon at 266 Oldman Rd Wooster. Click this link to sign up under a team that you know(my team is A Cure 4 Lil' Chris;)...http://fightcf.cff.org/site/TR?pg=teamlist&fr_id=2280 Our new walker this year has passed me! They have raised more money than me at this point...that's AWESOME!! WAY TO GO McKenna's Maniac's!!! I'm not done yet though;p LOL
Here is what we are going to have food wise this year: -Dominos Pizza -McDonalds Happy Meals -Panera Bread bagels -Chips -Buehler's fruit -Water -Soda -Lemonade -Cookies for dessert:)
Here is what we are going to have entertainment wise: -Wooster Fire Truck -Samaritan Ambulance -Pat Catan's Craft Table -Colored Hair Spray(CFers will be identified by having glitter spray in their hair along with purple or another color:) -Dr. Dave the Science Guy will be making balloon animals:)
Here are just some of the prizes we will be pulling raffle tickets just for coming to the walk and donating:) -2-Free 12oz cup of Frozen Yogurt at OH-YO's -6-$5 Gift Card to Donatos -2-$10 Gift Certificate to The Parlor Restaurant -$25 Gift Certificate to El Campasino -3-Free hair cut at Great Clips -3 month membership certificate at Curves -4-Free small combo at Arby's -11-Buffalo Wild Wings scratch cards -2-Akron Rubber Ducks Tickets -4-One Large Pizza at Pizza Hut -Free oil change at Wooster Lube Express -$25 gift card to Staples -$20 gift certificate to The First Amendment Public House Restaurant -4-2 free items at Taco Bell -Free bread once a week for a year at Panera Bread:) -200-free small kiddie cup of frozen yogurt at Kate's Diner:)
And of course, you will get a free Great Strides T-shirt for a donation of $100 or more!! :)
We are working on getting a Hot Air Balloon, a DJ, and some more prizes:) It's going to be a lot of fun, so bring the whole family and don't forget to wear your walking shoes and sunscreen! Pray for great weather!
BIG THANK YOU TO ALL THE WOOSER BUSINESSES THAT HAVE SPONSORED US THIS YEAR!!! WE ALL GREATLY APPRECIATE IT!!! :)
BIG THANK YOU TO EVERYONE WHO HAS DONATED SO FAR!!! YOU ARE HELPING US GET CLOSER AND CLOSER TO A CURE!!! WE WILL ALWAYS BE FOREVER GRATEFUL!! Thanks, M
I was going to blog about the exciting things we are going to have for our walk and to thank those who have donated and signed up to walk with us so far, but....I HAVE SOME EXCITING NEWS TO SHARE!!!!!!!
Lil' Chris has been approved for his wish to be granted from the Make A Wish Foundation!!!! YEA!!!!!!
We are all soooo excited!!!! I know you are probably wondering where we are going, so with no further ado ......DISNEYLAND in California!!!! WOOHOO!!!!!
It's kinda funny, b/c up until the day the Make A Wish volunteers came out to ask what his wish was, he kept saying he wanted to go on a Disney Cruise. Even right before they walked in, he was still saying Disney Cruise, with Disneyland as his 2nd choice. When they asked him what his wish was though, he said Disneyland. Not sure why, but we are glad he made that big decision all by himself. After the shock of him changing his mind, we realized that he made a great choice, b/c he will have much more fun at Disneyland going on all the rides, since that's his favorite thing in the world to do:) Good Job, Buddy!! We are so proud of you!!
All the details still have to be worked out, but we can't wait!!! Of course I will have lots of pics for you all when we get back:) It's not for a few months though, so this is going to be the longest few months ever! LOL
We are VERY thankful for this opportunity that Lil' Chris' CF dr has approved him to be ok enough to go on this trip, and for the Make A Wish Foundation to send us on this trip!!! We couldn't be more happy!
We are so thankful that his health has been good and he is able to enjoy such a great opportunity. It will truly be something he will remember for the rest of his life no matter how long or short it is. Wow, it's hard to type that, as I'm sure it's hard for you to read that, but it's the reality of Cystic Fibrosis. His health could change at any time. We are so thankful that his school has been so good about trying to keep him as healthy as possible, especially through this rough, long winter. THANK YOU Wooster Christian School staff and parents!!! You guys are the BEST!!! They are even doing "Change for CF" to help raise money for a CURE by bringing in their loose change!! Some school families have already signed up to walk too!! We are hoping to have a big WCS team at our walk again like last year:)
I'd like to try and give back to Make A Wish, so I'm going to try and set up some AiA events through Kohl's to help get them some $500 grants from Kohl's. Also, if you would like to give back, here is the link to our Make A Wish chapter to donate...http://oki.wish.org/
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