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Friday, September 23, 2011

Cough Update, Eating Chart, New White Vest Hoses, New Softgel Vitamin




Lil' Chris is still coughing;-( There are only 3 days left of his Omnicef antibiotic!! AHHHHH!!! So frustrating!! I just want his cough GONE!! We've still been doing extra Vest times too...that means he's been doing either 1 1/2 hours or 2 hours each day of his Vest!! Poor kid:( Today Ayla wanted to try his Vest:) She put it on and was so proud to be wearing it, it was so cute!! She kept saying she wanted to sit with Cas(Chris) :) She kept going "AHHHHHHHHHH" to make her voice sound all shaky:) LOL

If you didn't notice in my blurry picture above(sorry about that, but she was shaking, LOL;), we got white hoses for the Vest now! The old blue ones kept unraveling and I had to keep ordering new ones ALL the time! These white ones really seem to be MUCH better!! We haven't had any problems with them yet and we've had them for a few weeks now!! So if you are having trouble with the blue hoses too, just call the Hill Rom Vest company and ask them to send you the white ones. They told me that they are always working on improving the Vest, and that they were getting lots of complaints about the blue hoses.


On a good note...he has been eating more and trying new things!! YEA FINALLY!!! The other day he ate 3 plate fulls of fettuccine alfredo!! I know....WOW, right?! Lately he has been eating 5 whole chicken nuggets anytime we go to McDonald's too...who knew a lil' bbq sauce was all he needed;-) LOL!! Guess what???? Tonight he actually ate some of my Baked Ziti!!! I COULDN'T BELIEVE IT!!!! I distracted him by showing him Disney pics of his cousins who are at Disney World right now;) I'm so tricky, but hey....whatever works, right???? :) LOL




My wonderful hubby made an eating chart tonight for Lil' Chris!! YEA!!! Hopefully this will encourage him to eat more. He will get a sticker to put on the chart for each meal that he eats. Then at the end of the day if he has all 3 stickers, he will get to pick a prize!! :) His teacher at school uses this technique for good behavior and it seems to work, plus we used it when we potty trained him and it worked, so why not try it with eating?!?


At his last CF clinic visit, they gave us a bottle of SourceCF softgels to try instead of the chewable Vitamax. He was getting pretty tired of taking the chewable and it was a fight to get him to take it everyday. I wasn't sure if he would or could take the softgels since they are HUGE, but he took them like a champ!! I was so proud of him!! He's been taking them everyday since his last visit and he is VERY glad not to have to take the grape or cherry chewable Vitamax! When I tried to order the SourceCF softgels, they said that our insurance doesn't cover it and neither does BCMH. So I called and found out that a different softgel (Aquadek, I think it's called) which does the same thing is covered under BCMH, so I called the CF clinic and got the prescription changed and they are on their way! I hope he takes to them as well as he did the SourceCF ones:)


I'll keep you posted on his cough, eating chart, and the new softgels. Thanks for the continued prayers and keep 'em comin!! :)

M

Monday, September 19, 2011

CF Update

Remember when I said I thought the kids runny noses were just from allergies??? Well, I'm thinkin they were colds now, b/c I'VE got a cold! Lil' Chris is STILL coughing some pretty nasty coughs. My guess it's from the drainage, b/c he is still stuffy. Ayla has had a little dry cough off and on.

So, I've got my mask on and am trying to stay away from the kids even though they have already had the cold. I really don't want it to start all over with them! It's so hard though, b/c my kids are so lovable. They keep asking me, "Mommy, I want to hug you and kiss you" or "Mommy, I want to sit with you!" It's sooooo hard for me to say "No, Mommy's sick. I don't want to get you sick." It breaks my heart to upset them;(

Lil' Chris is doing GREAT at preschool!! He LOVES it!! He is doing GREAT taking his enzymes before snack time!! Apparently he already has a girlfriend named Josie. All I hear is Josie this and Josie that:) "Josie is cute!" :) Boy do they start young these days;-) LOL!! I guess he takes after his momma;) LOL!!!!

Please continue to pray this nasty cough goes away soon. If it doesn't go away by the time this antibiotic is up, then the CF clinic will probably want to see him. We try to stay out of that place as much as possible, so not to catch any more germs/bacteria!!

Thanks,
M

Thursday, September 15, 2011

Cough Update / 1,000 HOURS on Vest / Fair Week pics

Holding hands walking at the Fair....love it:)

Tomorrow it will be 10 days that Lil' Chris has been on this Omnicef antibiotic. I think that was all they wanted him on it for. Well, guess what?? HE'S STILL COUGHING!! It almost seems worse! We've been doing his Vest like 4 times a day too!! He did actually spit a couple of times after coughing!! YEA!! This is what CFers are supposed to do...cough and then spit, esp when doing treatments. The Vest shakes up all that thick sticky mucus in their lungs, and then they are supposed to cough it up and out. I've been trying to teach Lil' Chris this for a long time, but he finally is getting the hang of it...not as much as I would like, but it's a start:)


So anyway, I called the CF clinic to get a refill on the Omnicef. Please pray it starts to kick in soon! This is the first time we have used Omnicef and I'm not so impressed yet.

Tonight was supposed to be Lil' Chris' 2nd soccer practice, but last week AND this week both got canceled!!! Is he EVER going to get to play soccer?!?! LOL! Poor kid was so excited 2 weeks in a row and then was so disappointed:(


Lil' Chris hit another milestone...he has done his Vest for OVER 1,000 HOURS and he's ONLY 4 years old!!! WAY TO GO BUDDY!!!!! I'M SOOOOO PROUD OF YOU!!!!
Above he was at 994 hours, below it was at 1,001 hours. It's kinda weird how it is missing one of the zero's in it though. Is everyone's like this once it passes 1,000??


Lil' Chris and Ayla's 3 fish all died;( They won another fish at the Fair on Monday, but today when we woke up...it had died too;( I guess we aren't very good at taking care of goldfish. LOL! We even bought a bigger fish tank with a filter and everything! I think Daddy was more upset than the kids! He was the one who kept cleaning the tank all the time;) The kids didn't take it too bad. Lil' Chris was kinda excited about flushing it, and flushed before we could even pour the fish in!! LOL!!


I saw this tomato planter on clearance for like $1, so I bought it for the kids to plant the seeds and watch them grow. Here are our tomatoes!! Not sure what we are going to do with them, since it is not the season for them now, but it's fun to watch them grow:)
This week was my hubby's 32nd birthday! HAPPY BIRTHDAY HONEY!! It was also Fair Week, so we went on Monday and then tonight to check out the Demolition Derby. The kids had a BLAST!! If you click on the pictures, you can probably see them better:)



Lil' Chris WISHES he could get this BIG 4-wheeler!!!
"Ayla's PINK 4-wheeler"...everything is "Ayla's pink"...Ayla's pink bus will go to Ayla's pink school, etc...she's a riot!! :) She finally found a Pink 4-wheeler:)



Lil' Chris on Daddy's shoulders watching the Demolition Derby...

Ayla and Lil' Chris' noses were a little runny today. I think it is just allergies, but we are going to keep an eye on them. Praying it's not a cold.

As for me...I'm doing great! Got some great news and I have passed the 300 mark!! I have run on my treadmill for 319 days straight!! The only days I missed was when we were on vacations and I was away from my treadmill!! :) WOOHOO!!! Feels GREAT!! Pretty soon it will be one whole year!!!

Thanks for all the prayers for Lil' Chris,
M

Tuesday, September 6, 2011

Cough is worse;( New Antibiotic / Fundraiser Results for the year!!

I had to call the CF clinic today to ask for some kind of antibiotic, b/c Lil' Chris was coughing his head off all day!!! Before he started preschool, we thought his cough was getting better, but it definitely turned for the worse!! They said his throat culture result was the same as usual, MSSA, but I wonder if they took a culture today if it would be something different. I just hope that this antibiotic kicks in quick and he gets rid of this nasty cough really soon!

They prescribed a different antibiotic this time. It's called Omnicef. He has never had this one before and so far he really likes the taste of it:) YEA!!! It's not all goopy like the Ceftin. It reminds me more of the Augmentin, but it doesn't need to be refrigerated. He takes 5ml every 24 hours, so it's kinda nice not having to do it 2 times a day too:)

Lil' Chris and Ayla have had some runny noses too, but I think it is just allergies, b/c mine have been acting up too. Plus, I have shared food with them and I haven't caught a cold or anything. This is probably where the cough came from. The CF nurse said to do his Vest 3-4 times a day and do Albuterol every 4 hours as needed for his cough. I have been doing some manual CPT on him off and on, and it seems to make him cough more which is good to help him clear the mucus...if only he would cough it up and spit it out!! It reminds me of the old days when we used to have to pound on him every morning and every night as a baby;(

On August 31st, I had another CF fundraiser at CiCi's Pizza. This was my 9th one this year and thanks to my awesome fellow employee's, Kohl's gave a grant of $500 each time!! They also gave $500 for our CF Great Strides Walk too!!! So that brings the total to $5,000 just from Kohl's!!!!! This was our goal and it is the most we've raised in only ONE year from Kohl's alone for Cystic Fibrosis for Lil' Chris and ALL CFers!! I'm so proud to work with such GREAT associates and for such a GREAT company that supports such GREAT causes!!! The Lord really knew what he was doing when he put me at Kohl's 8 years ago! Now if only they would promote me.....;-) LOL!!!!
BIG THANK YOU to my girls at Kohl's who helped me out with the last fundraiser...


Patty K

Barb

Esther

Donna

We raised a total of about $680 that night!! Overall this year, our total from doing these CiCi's Pizza fundraisers is over $6500!!!!! Woo Hoo!!!! BIG THANK YOU TO KOHL'S AND CICI'S PIZZA AND MY AWESOME KOHL'S ASSOCIATES!!!!!!!!! THANK YOU THANK YOU THANK YOU!!!!!!!

BIG THANK YOU TO EVERYONE WHO WALKED & DONATED THIS YEAR & WHO HELPED RAISE MONEY FOR CF AND FOR LIL' CHRIS!!! Everything is not in yet, but our total should be around $9,000!!!! Last year we raised almost $7,000:)

Please pray Lil' Chris' cough goes away soon. I'll keep you posted,

M

Saturday, September 3, 2011

1st PFT Video / CF Update




Lil' Chris' CF clinic visit went VERY well!! His appt was Wed 8/24/11 and he did his very first PFT!!!! I was soooooo proud of him!!! We were told that he wouldn't do these Pulmonary Function Tests until he turned 5 or 6, but I guess they thought he could handle it now?!?! Either that or it was just an excuse to get him out of the room so that they could ask me questions about his eating habits and such. I'll admit...I was VERY disappointed I did not get to go with him to do his first PFT;( I tried to, I told them I wanted to take pics, but they said they wanted to talk to me not my husband. Oh well, there is always next time, since he will be doing this test EVERY CF clinic visit for the REST OF HIS LIFE, which is every 3 months.

Anyway, while he was doing his PFT, I was talking with a specialist. She asked me lots of questions about what he eats and what he does when we try new foods with him(spits it out). She said to encourage him to eat more and try new foods, we should praise him and give him a reward or something. I told her we already do that. That was basically all it was. I don't think I needed to miss his PFT for something I already knew. Oh well!!




You know....I always dreaded him having to do a PFT, but it wasn't so bad! He seemed to really have fun with it, since they have kid games associated with it. He had to blow up the hot air balloon, roll the ball in bowling, and blow out the candles on the computer screen, all just by breathing out really really hard and long! In the video, you can kinda see the computer screen and Lil' Chris blowing, but it got cut off a little when I uploaded it, sorry:( He kept stopping and taking a breath, but he still blew a 83%! Not too bad for his first time! Hopefully next time will be 100% or more:) Also, PFT's always worried me b/c of the possible cross-contamination, since every CFer in that clinic puts their mouth on it, but my husband said that they put a new mouth piece on for every patient, and the nose piece is always a new one too! Lil' Chris liked playing with the nose squeezer thingy afterwards;-) LOL





Since Lil' Chris did such a good job and didn't cry or anything when they did the throat culture, we took him to play mini golf!! Does anyone recognize the shirts Lil' Chris and I were wearing?? We got them from Josh at "Welcome to Joshland." Thanks Josh for the Awesome shirts, and Awesome CF blog, and Awesome videos that teach lil' kids about Cystic Fibrosis!!! (Click on that last blue line and you can watch Moganko do a PFT:) Lil' Chris LOVES watching his videos, b/c they contain a puppet to make it fun, named Moganko!! Plus, Josh is pretty hilarious too:)


His last CF Clinic visit was 5/18/11 (3 months ago) ......

Weight was 38 lbs. 6 oz .........now it is 38 lbs. 8 oz :( wish it was more, but dr. didn't seem like it was so bad since he keeps getting taller.

Height was 42 inches .........now it is 42 3/4

BMI was 47 % .................now it is 44% again, the dr. said this was still good since he keeps getting taller.

I was hoping for better results, but I guess I won't worry too much if the dr. isn't too worried about it. I'm still going to try to feed him as much as possible and get as many calories in him as I can. I asked the dr. if there is a certain amount of calories he should be eating every day, but she didn't really give me certain number. She asked what he was eating and then said to switch fruit snacks for snack to oreo's or another high calorie snack. By doing this, it could add a couple hundred calories per week, but he LOVES fruit snacks and isn't a big fan of oreo's, he does love chips though!

I just emailed the clinic to find out what his throat culture was, b/c he has been coughing quite a bit the last couple of days. Last night he had a hard time falling asleep b/c he kept coughing and coughing, poor thing;( It's kind of a mix between a dry and wet cough. I would say more dry than wet. He was complaining his chest hurt. To help him stop coughing so he could sleep, I gave him 2 puffs of Albuterol and a drink, and did some manual CPT. Today is definitely going to be a 3-4 times a day for his Vest!! I'm praying he didn't catch any bad bacterias. He's only been in preschool for 2 weeks!!! I wonder if he's going to make it the whole year without having to be put on a daily nebulizer treatment?!?! It's not looking so good;(

Thanks to Mary, local fellow CF mom, I went and bought an alcohol free hand sanitizer which is what they use at her CF son's school. She said that the kids use it every time they enter or leave their classroom. His teacher said that it cut down on the number of colds throughout the year, which is GREAT when you have a CFer in the class!! So Mary told me where I could find it, and I went and bought some for Lil' Chris' classroom. It comes with a MSD paper(I think that's what it is called) which basically says it's legal to have in the classroom if a health inspector comes in. His teacher was very receptive to it!! I haven't had a chance to ask her how much they have been using it though. I'll try to remember next time:)

Last night he woke up in the middle of the night throwing up a few times too. Not sure what from yet. My husband thinks maybe from all the coughing earlier, but he was throwing up like he ate some soy protein, which he is allergic to. I would say the hardest thing about Preschool is that I have no clue what he eats for snack! So I'm not sure if he was throwing up from something he ate at preschool or not. I'll have to start hanging around afterwards so that I can ask what they ate for snack, I guess.

Please pray his forceful cough goes away soon and that he won't need an antibiotic!
Thanks,
M