A Cure 4 Lil' Chris
Our 8th Annual Great Strides Walk for a Cure for CF is on Sunday, May 15th at 11am! Please join us!!:)
WHAT IS CYSTIC FIBROSIS? CLICK HERE TO FIND OUT.
CLICK HERE TO DONATE FOR A CURE IN HONOR OF LIL' CHRIS
Our old CF Commercial that plays on MCTV. Still working on this years.
Tuesday, March 1, 2011
Venting / 1st Fundraiser of 2011 Coming Up
YEA!!! I got my first sponsor!! Thank You Aunt Mar!!!! You won the 1st sponsor of 2011 award;-)
Make an on-line slide show at
www.OneTrueMedia.com
I've updated my Great Strides video with a couple of new pics, but kept the rest the same. If I had the time and energy, I would redo the whole thing, but my plate is kinda full at the moment. I made a list of all that I have to do to get ready for the walk, my fundraisers, and to get raffle prizes ...and....well...it's a lot!
Organizing a walk takes a lot of effort and time. Something I don't have either of right now. I don't have the time that I used to anymore, b/c Chris and I are hardly ever home together anymore. When it's just me and the kids, I can't seem to get anything done b/c they just want to play with Mommy instead of Mommy "working." I hate that I have to tell them, "Mommy has to get some work done right now, I'll play with you when I'm done." I feel like that's all I say to them at this time of year, b/c if I'm not busy "working" on the walk or fundraising, then I'm busy "working" on the laundry or dishes or vacuuming or cleaning and organizing their drawers and closets for the change in sizes and season!! I do all this AFTER working a full time job!! Oh yeah, and my back still hurts;(
Not only do I have a list of fundraising stuff, but I have a list of other things that need done around the house too that I just can't seem to get to or have the energy for... like take everything out of the fridge and clean it, steam the hardwood floors, make some sense of our messy basement, clean out my own drawers and closet, clean out the junk drawers, etc....
I think I get like this every year right before my first fundraiser, b/c there is so much work. I have to make new flyers, new poster, new signs, get raffle prizes, etc. Once I get that first one done, then the next ones are a breeze. It's just all so overwhelming right now!! I think that's why I don't have the energy! This time of year, I wish my husband was a stay at home dad so that he could help by doing all the day to day chores, so that I could concentrate on fundraising since he doesn't seem to want to do that kind of stuff, but not too many guys do;) LOL
I know I'm just stressed out now, but once I get more things for the walk and my first fundraiser done and more donations, I'll feel a lot better:) Luckily I'm the type of person that can walk into work and forget about all my stress at home. I "leave it at the door" as they say;-) Many coworkers didn't even know my son had a fatal disease until I did our first A-team(AIA) event for Cystic Fibrosis when he was about 1 year old! I'm not one to talk much about my personal life at work, I'm one to work and see what I can make better:)
Thanks again to Aunt Mar for starting us off this year, and thank you to
Panera Bread
for donating 100 bagels for the walk this year!!! This makes me start to feel better:) YEA!!
Join us for our first fundraiser of the year on Monday, March 21st at
CiCi's Pizza
in Wooster between 5pm and 8pm to help find a CURE for Cystic Fibrosis!!! There will be a raffle for a
1 hour massage
at Tips, Toes, and Beyond,
and a percentage of your receipt will go towards a CURE!!
Thanks for letting me vent, I needed that;) LOL
M
PS. Lil' Chris' cough seems to be getting better, so thank you to everyone for all your prayers:) We started potty training Ayla this past Saturday night, and she hadn't gotten any stickers on her chart(actually gone peepee on the potty) until Monday night. Hopefully she trains faster than Lil' Chris:-)
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Welcome To Joshland!!
Lil' Chris' Med List
Last updated: 5/1/17
Age: 9
Gene Type: Double Delta F508
Diagnosed with Cystic Fibrosis at 2 weeks old
Digestive:
Enzymes- 3
Creon 12,000 with every meal and snack
Vitamins-
1 chewable Aquadeks once a day
Reflux-
1 Prevacid Capsule(15mg)once a day to help enzymes work better
Respiratory:
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
-1st liver ultrasound in 2016
-1st glucose test 6/21/17
He has never had any sinus problems... Praise the Lord!
Last CF Clinic Visit: 3/15
/17
Weight: 76 lbs. 5 oz.
Height: inches
BMI: 42 percentile
PFT: 111/110
Next CF Clinic Visit:
6
/21/17 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.
Thanks,
M
Search My Blog for Anything =)
Start here!
Hi! I'm a CF Mom (M) and my son is Lil' Chris. He is 10 years old. He's not so little anymore, so we just call him Chris or CJ now;) 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 20 months younger than Chris and does not have CF and isn't even a carrier.
Culture Results
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.
Weight, Height, & BMI List
-10/24/12 46 lbs, 46 1/4 inches, 30th % BMI
-2/20/13 46 lbs 9oz, 47 inches, 35th % BMI
-5/8/13 47 lbs 8oz, 48 inches, ? BMI
-12/17/15 57.5 lbs, 52", BMI 14.96 30th%, PFT 111/110
Lil' Chris' Antibiotic List for Coughs
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!!!!
Once in 2015 & 2016
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.
Fevers
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
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CiCi's Pizza CF Fundraiser Results
CF Fundraiser Tonight at CiCi's Pizza 5-8p!!!
CF Clinic Visit 3/16/11
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Productive Day!! :)
Venting / 1st Fundraiser of 2011 Coming Up
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CF Links of Note!
CysticFibrosis.com
The Cystic Fibrosis Foundation
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