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

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

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

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!!

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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

1st Day of Preschool Pics/Video's

As promised, here are some pics and video's of Lil' Chris' first day of preschool. Sorry it is so long, but I don't have much time to edit it b/c I have to go to work...

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He said he had a lot of fun and wants to go back again:) His teacher said he did a great job taking his pills at snack time and played well with the other kids:) YEA!!! He made me VERY PROUD today as I watched him:) Go Lil' Chris!!!

Pray for a healthy year!!
M

All Excited about 1st day of Preschool!!!

At "Open House" last night...
First pets...3 goldfish:) My kinda pets;-) LOL!!!!...

Ayla likes them too:)...

I can't believe my lil' boy is all grown up...well, not quite, but too close for me;) LOL

Today he starts his first day of preschool at the age of 4! He has been so excited to start and the day has finally arrived!! I'm surprised he got any sleep last night...I sure didn't!! LOL!!! We went to his preschool last night for "Open House" to meet his teachers and the other kids and their parents. He was able to point out his name on the door, the wall in the hallway where is backpack goes, and all over the walls in his classroom for different things:) I was soooo proud of him!!!

After we checked out his room, we went to the playground. My husband and I thoroughly checked everything for bacteria and such, and we found some nasty standing water in the 2 sandboxes. Freaked me out, b/c it was screaming BACTERIA, BACTERIA, BACTERIA!!! My biggest fear!! I told the teacher not to let him go near those, so hopefully he will stay away from them. There was one truck that was kinda gross too, so I asked if they could throw it away and I would donate one to replace it:) LOL!! A CF mom can't be too safe, right?!?!

Lil' Chris also donated a HUGE bottle of hand sanitizer;) LOL!! I asked the teacher if all the kids could sanitize every time they enter or leave the classroom, since this seemed to keep down the colds and such in Daniel's(fellow local CFer) preschool room last year. She said there are laws about kids sanitizing and she would look into it. Another mom was standing there when I asked, and she seemed to be against it....DARN!!!!! She was saying that the alcohol seeps into their skin and they like become alcoholics or something...blah, blah, blah.... Oh well, I tried;-)

I just wish I could be there everyday to make sure he is sanitizing after playing with the toys, and to make sure he doesn't go in the sandboxes where Pseudomonas could be lurking, and that he stays away from any sick kids. I won't be able to forgive myself if he catches Pseudomonas, since we didn't HAVE to send him this year. I'm such a worrywart!! LOL!! I've been up since 3:30am worrying about those sandboxes and that one other lil' boy who was coughing at the open house last night. I just have to give all my worries to God and let Him handle it to His Will.

Well, I gotta go wake up Lil' Chris, b/c he has to get dressed, brush his teeth, comb his hair, eat breakfast and do his Vest at the same time hopefully, take all his pills, feed his new fish, get his pills and backpack, and walk over to his school for his very first day at Preschool!! Woo Hoo!!!! I love that it's so close and in walking distance:)

Pray he has a safe and healthy first day and school year!!! I'll post 1st day pics soon, I promise!!

M

PS. His cough is getting much better and he usually only coughs during his Vest now, so it should be gone soon...well, now that he is starting school, IDk, we'll see. He has a CF clinic appt this Wed and unfortunately will be missing his 2nd day of preschool;(

Another Successful CF Fundraiser Tonight!!

We had another GREAT fundraiser tonight for Cystic Fibrosis!!! Thank You CiCi's Pizza for always letting us do fundraisers there!! :)

BIG Thank You to Kohl's for yet ANOTHER $500 grant!! I actually had 6 Kohl's associates help out tonight!!! Thank You....

Jill
Rebecca
Barb

Kathleen

Kim

Thank You Barb and Jill for doing the CREATIVE face painting:)

Thank You to our Awesome neighbor Jeff for coming out and supporting Lil' Chris and Cystic Fibrosis for the 2nd time in a row!! :) Thanks Jeff for explaining to me where you got the name Federal Photo from for your AWESOME professional photography business:) If anyone is looking for a GREAT photographer, click here. You won't regret it!!! :)

Our total was around $750!!! WooHoo!!! Thank You Everyone who came out and donated for a CURE for CF!!

There were 3 different customers tonight that had all been at one of my previous CiCi's CF fundraisers, which was really cool!! One of them was actually the raffle prize winner of the 1 hour free massage at Tips, Toes, & Beyond!! :)

Congrats to Cassy Brown who was the winner of the raffle prize tonight:) Thanks Cassy!!!

My next, and possibly last, fundraiser at CiCi's for this year will be on Wed 8/31 from 5-8pm. The raffle will be a 1 hour massage at Tips, Toes, & Beyond and a Buy One Get One Free Indians ticket. Hope to see you there!!

M

PS. You can click on any of the underlined words to follow a link to that site:) I highly suggest checking out the Kohl's one;-) LOL

1st Disney Vaca Pics/Video!!

In May we took the kiddos to Disney World!!! YEA!! It was sooooo much fun!!! They had a BLAST!! I'm so glad I achieved my goal of taking Lil' Chris to Disney before his health may decline(hopefully never;) Of course, I did tear up a couple of times when I was watching his face light up with excitement! It's hard not to when you think of what could have been these last 4 years and what may be in the next...who knows how many years.

This was our first "real" family vacation!! I can't wait to do it all over again!! Hopefully we'll get a chance to do it once every year;-)

Thanks to a fellow CF mom, we got a letter from our CF clinic so that Lil' Chris wouldn't have to stand in long, hot lines which may cause him to become dehydrated. It truly was a blessing, b/c we would not have been able to go on half the rides we did if it wasn't for the pass we got. It allowed us to stand in the handicap line instead of waiting in the long lines, and there was never anybody in the handicap line, so we usually got right on the ride. It was soooo nice!! Although I would MUCH rather Lil' Chris didn't have CF and have to wait in the long lines with us all being healthy! ;(

Ayla did a GREAT job! She is potty trained, but we weren't sure how she was going to do at Disney where you might not be able to find a potty right away. She wore a pull-up in the long car ride there and back, but at the parks she DIDN'T!!! WooHoo for no accidents!!! Way to go Baby Girl!!

Special Thank You to my sis and her fam for letting us stay with them on the way up and back from Disney. It cut the long ride in half which was VERY nice!! Plus we got to visit with them for a couple of days, which was AWESOME!!!

I hope you enjoy this video...beware...it is like 19 minutes long;) There was just too much good stuff to cut out ;-) Although I did cut out a lot b/c it WAS over 30 min long;-) LOL! What can I say...I like capturing precious moments:)

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Coming soon....more Disney pics that the professionals took(way better than mine;-) lol

M

PS. Don't forget...CF Fundraiser at Wooster's CiCi's Pizza tomorrow Tues 8/16 from 5-8p!!