Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)
One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??
A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.
At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.
So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)
As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!
Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)
I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!
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