We surprised the kids with a trip to DISNEYWORLD!!!! WOOHOO!!! It was soooooo much fun!!! We ALL had a BLAST!!!! It truly is a magical place:)
Don't worry, the video above is not the only video I got! More pics and video coming soon:)
I couldn't believe how tall the kids have gotten since last May when we went!! Lil' Chris is 44 inches and Ayla is 38 inches!! They got to go on extra rides this year!! Lil' Chris got to go on his first really BIG roller coaster!! I thought he was going to be scared(I was), but he LOVED it!! He went 2 times with Daddy and 2 times with me:) I couldn't help but watch his face the whole time laughing and giggling, even though I was afraid of hurting my neck on the twist and turns;-)
So get this...I got the letter from the CF clinic like last time so that we wouldn't have to wait in the hot lines b/c he has a fatal lung disease....and wouldn't you know...when we got to the park the first day, I had forgotten it at our hotel room!!! UGHHH! So I went to talk to them to see if I could get that pass at any park and the girl said "What did you need?" At first I didn't know what she meant. Then I said, "Well, last year they gave us a pass for the rides and also one for our stroller." She said "How many are in your party?" I said 4. So she wrote them up and gave them to me!! I was SHOCKED!!! I didn't even have the paper or nothing!! I was soooo happy tho, b/c we ended up going on a lot of rides that night. We got to go on a lot of rides EVERYDAY thanks to that pass!!! We would just get right on!! We even got to skip the lines for the characters autographs too!!! Although, I usually felt bad doing those, so we would only do it on the really long line ones, like for Mickey:) It was AWESOME!! The one and ONLY good thing about Cystic Fibrosis! I'm just so happy he was healthy enough to go again!!
I was a little worried about what the weather was going to be like, but the Lord blessed us with an absolutely beautiful week!!! It was in the 80's the whole time and no rain until we were driving home, then it rained a little on our drive!! Usually when we go to Disney, it is soooo hot that I have to use a fan/water squirter, but I didn't have to use it at all this time!! We even went to Blizzard Beach Waterpark the last 2 days and didn't have to worry about burning our feet on the hot concrete!! Both kids went down water slides that I was even leery about going on at first;-) LOL
Unfortunately Lil' Chris developed a cough on the second day. I think it was b/c we went swimming in our All Star Sports resorts heated pool late at night and then when we got out, it was a little chilly. I guess too much for his lil' lungs, IDK. Anyway, that night he woke up at about 2 in the morning with that weird barking cough that he had once before. He coughed for a lil' while and wanted to lay with me. Luckily I brought his inhaler and Acappella. He eventually calmed down and fell back to sleep. His cough didn't sound as bad when he woke up, but he did have a lil' cough the rest of the week, and by the end it turned into a wet nasty cough. Monday 1/30, when we got back home, the first thing I did was call the CF clinic. They got him on an antibiotic right away, since he cultured a new bacteria last time. He cultured his usual Staph Areus(MSSA), and then Stenotrophomonas (Xanthomonas) maltophilia, which is new, but they said does not need treatment unless he is ill. They said that this is a common bacteria and may come and go in his cultures from time to time.
The CF nurse doesn't think it was b/c of the pool, but who knows?? He could've caught something at the park or at a rest stop on the long drive. Going to Disney is always a risk we take. I was especially nervous this time, b/c we went in cold and flu season. I guess in a way we are lucky he only got a cough and not the flu.
So he is taking Bactrim 2 times a day, 12.5 ML each time...that's the most I think he has ever taken!! Please pray his cough goes away completely, it's already starting to get better! He has a CF clinic appt on the 15th, so I'm praying it will be gone by then and his new throat culture won't have any new bacterias. Stinks he will miss his preschool Valentine's party;-( I was so sad when I noticed that, b/c that was my favorite day of the year growing up and I got all excited he was going to have one this year. Oh well, it's not like he doesn't have 12 more years to go, right?
My sister D and bro-in-law were nice enough to let us stay at their house on the way to Disney and back to break up the looooong drive. It was soooo nice spending time with them!! I really miss my big sis! I had a lot of fun painting nails with my nieces too. They are getting so big!! Lil' Chris had fun playing new video games with his cousin:) On Sat 1/28, we celebrated Ayla's 3rd birthday!!! YEA!!! It was so nice celebrating with my family:) Ayla loved all her princess presents, esp the castle that Aunt D got her;) Pics/video coming soon, I have to finish editing it:) The story of my life!! LOL I noticed I have a ton of video's that I uploaded but never posted b/c I never finished editing them. Hmmmm I wonder if I can edit them on my iPad??? I'll have to try it.
Oh yeah, not sure if I mentioned it on here...I won an iPad2 at work!!!! I still can't believe I won it, I never win anything!! I'm soooo very thankful for it tho, b/c Lil' Chris loves playing with it while he does his Vest....I love it b/c it keeps him quiet during his Vest;-) LOL Plus it's a good incentive for him not to complain about putting his Vest on..."If you put your Vest on, you can play the iPad!" He usually runs right over;-) Sooooo nice!
On another good note about work, I was accepted into the Advancement into Management training!! I'm already part of the management team, but on the low end. This will make me an Executive...an Assistant Store Manager:) I've already completed my training and am just waiting for a position to open up!! I'm REALLY hoping and praying that I get to stay at the same store!!! I really don't want to be too far away from Lil' Chris if anything were to happen with his breathing. Also, IF he were to ever get hospitalized, I may still be able to work since it's only like 5 min away. Please pray with me that I get to stay at my current store :)
Thanks, M PS. Ayla developed a stuffy nose last week, but so far no one else has caught it...maybe allergies or something b/c it's not bad at all???? Probably something to do with this crazy warm winter we are having! Although....it IS SNOWING NOW!!! YEA!!!
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.
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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