I've got some HUGE THANK YOU'S for some VERY special friends & family for all their support! This year has been very hard for me fundraising wise. I normally have 5 or so events/fundraisers done by May, but I only have 1 done. I just can't seem to get motivated this year for some reason!
I don't know why, maybe it's just starting to hit me harder that my son's health is not going to get any better as he gets older...it's only gonna get worse. In just this past year alone, he has started an inhaler, the acapella, newer/stronger antibiotics, and will be starting his first DAILY nebulizer called Pulmozyme in less than 2 weeks.
It's hard and takes a lot out of me to do a fundraiser and talk about "my son with a fatal disease called Cystic Fibrosis" for 3 hours straight, it's hard to sit down at the computer for hours trying to come up with the right words to practically "beg" your friends and family to donate so your son can have a longer more normal life, it's hard trying to raise awareness about a disease you despise more than anything in the world!
CF is not something I want to think about on a daily basis. Sometimes I just want to pretend he doesn't have it and just live a normal life and spend every waking moment with him while I have him, but NO...I CAN'T. Keeping quiet about CF is NOT going to help my son live longer, it's NOT going to help him breathe easier, it's NOT going to help him live a more "normal" life.
Going outside of my comfort zone by speaking up, writing emails, practically begging people for money, putting together a Great Strides Walk and raising money IS!! The following friends and family have inspired me and encouraged me to do more and NOT give up!! They know how important it is to raise the MUCH needed money for a CURE! Lil' Chris NEEDS me to do all these things I hate...his life depends on it.
So without further ado, my HUGE THANK YOU'S go to...
1. to my sister, D, and her family for raising $600 and walking for "A Cure 4 Lil' Chris" today
at the Great Strides Walk in NC!! YOU GUYS ARE THE BEST!!! Thank You to the
Jarvis Family for walking too:)
2. to my sis-in-law and family for donating and walking in NJ for "A Cure 4 Lil' Chris" and for braving the freezing cold weather:) THANK YOU ALL SO MUCH!!!
3. to our friend Kevin for getting his work, Preferred Wireless, to be our "Kick-off Sponsor" of $300 AND they are donating tons more for the walk, like lil' baggies to hand out and such.
4. to our friend Deb for getting our "K-Marker Sponsor" of $250 who's company wants to remain anonymous...I think that's pretty cool...a company donating so much and not wanting any publicity for it!! :)
4. to Lil' Chris' teacher, Ms. Carrie, and all his classmates for doing "Change for CF" til the end of the school year!! They are bringing in change every day and I even saw some dollars in there too!! I can't believe their jar is almost full!!! Way to go kiddos!!! This will definitely "Change" CF forever!! ;)
5. to my friend Jeanette for getting her work, Wayne Savings Bank, to be our "Single Rose Sponsor" of $125!!
6. to our neighbors and friends who have come to us asking how they can help and for brochures to try to raise some money for CF...Sean & Michelle, John & Andrea, Melissa B., Carrie G., and Stephanie W at our church for helping get a team going there!! You guys are all the BEST!!! Your effort and interest means soooo much!!
7. to Stacie A at work who offered her support in any way and would love to go to my fundraisers and our walk, but can't b/c she has the sister disease to CF called Bronchiectasis. She has all the lung problems, but not the digestive problems like CFers.
8. to our neighbors who will be participating in our annual CF Bake Sale next Sat May 12th 8a-3p at our Community Garage Sale!! THANK YOU EVERYONE IN ADVANCE!!
BEST part about all these amazing people, is that they did it all before I could even ask!! Isn't that AWESOME!! THANK YOU GUYS SOOOOO MUCH!!!
Lastly, I want to say a BIG THANK YOU to all those who have donated these past almost 5 years!! It saddens me to
think about what Lil' Chris and all his CF buddies health would be like
if myself and other CF parents didn't bug all our friends and family
for donations. It's because of you guys that Lil' Chris is well and able
to go to Kindergarten this year! 50 years ago, CF children didn't even
live long enough to attend Kindergarten, so Lil' Chris going to
Kindergarten this year is a BIG deal and YOU are all a part of that!!! Thank You All!!!
I can't thank you all enough for your dedication, love, and support!! It means the WORLD to us!!!
PS. If you haven't donated and would like to, click the Great Strides link under my header picture at the top of my blog to the right. If you would like a sample letter to send out to YOUR friends and family to help raise awareness and money, email me or leave a comment and I will send it to you. Thanks so much!
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