1st Grade and JK!!

I can't believe Lil' Chris and Ayla are both going to school now!! Lil' Chris is in 1st Grade and Ayla is in Junior Kindergarten. Time sure does fly!!!

They started on Tues 8/20/13 and they are both LOVING Wooster Christian School!! Ayla has the same teachers that Lil' Chris had last year, which is wonderful b/c they already know to be germ cautious even with Ayla, b/c she could bring home germs to Lil' Chris. Lil' Chris loves his new teacher and classmates! He's already asking for a play date with one of them:) He said "Micah's my best friend!" :)

 Here is Ayla's outfit that she picked out all by herself...Kohl's of course;)

Lil' Chris goes 9-3:30 and Ayla goes 9-12. Lil' Chris gets to take the bus in the afternoon which he LOVES!!! This was the first time he ever rode a bus all by himself...my lil' boy is getting soooo big;(

 
His new teacher has been very receptive to everything I have told her a bout being germ cautious. She even put a hand sanitizer in her recess bag, and he has a small one in his desk! She said she will move his desk if someone close to him is coughing or is sick just like they did last year. It seemed to work pretty good last year! He only had 2 colds during the school year, and after the first one it unfortunately turned into a bad cough which turned into our worst nightmare...Pseudomonas:( But, he did the harsh treatments of Cipro and TOBI and we were successful in eradicating it after a few months!!! He has cultured "Normal" since then!! His next CF clinic apt is on 9/18, so I am curious to see what his culture result will be. I'm praying it continues to be Normal and no Pseudomonas!! Pseudomonas is a VERY VERY dangerous bacteria to have in his lungs.

The Administrator has been super helpful in setting up his 504 plan again this year. We only had to add one thing to it b/c he will be eating lunch there this year. Since calories and keeping his weight up is soooo important for CFers, I asked that he be monitored and pushed a little to make sure he eats. So far so good! The first day he came home and said "Mom, I ate my WHOLE sandwich...even the crust!!" :) YEA!!! I'm trying to figure out how to get more calories into his lunchbox...this is all new, so still figuring things out;) I'm thinking maybe buying something that won't spill so I can put his whole milk or scandishake(600 cal drink) in it. I'll figure something out.

I'm also getting with the Administrator to send a letter out to the parents of both their classes to inform them what CF is, that it's not contagious, and to ask if they could please keep their child home if possible when they are sick, or to let the teacher know in the morning so that she can keep them separated. This is HUGE HUGE HUGE and very important for Lil' Chris' health, b/c just the common cold could put him in the hospital!!

The kids are selling Eagle Cards as a fundraiser for school, so if anyone lives in the Wooster area and would like to buy one, just let me know! They are only $10 and have many different great deals on them!! One of them being a buy one public skate admission and get one free at Alice Noble Ice Arena. That's where I do most of my CF fundraisers!!! I'm proud to say that a few of the others on the card have helped out with CF in one way or another too!! Here are some of them...
Domino's Pizza(they donated all our pizza for our walk the past 2 years:)-buy one pizza and get one free
Auntie Anne's-buy 2 pretzels and get one free
Buffalo Wild Wings-buy a sandwich and get one free
The Faithful Little Cupcake(they did a CF fundraiser last year:)-buy a coffee and get a free cupcake
Hartzler's Ice Cream-buy one small ice cream and get one free
OH-YO Frozen Yogurt-buy one and get one free up to 10oz
Omahoma Bob's BBQ(they did a give away at our CF walk:)-buy one dinner and get one free
Wayne Lanes-buy one game and get one free
Wendy's-buy one combo meal and get one free (you get your money back right here, b/c one combo meal is like $7 and you can do it up to 4 times, so you spend $10 on the card and can get potentially $28 worth of food for free!!:)
There are others too, and some you can do up to 4 times and others are 2 times each, and others are unlimited amount of times, like Domino's!!! :) The best part is, that you have a whole year before it expires!! Let me know if you are interested, b/c we only have until 9/19 to sell them!! Last year we personally used 2 cards!! The Wendy's alone was worth it!! :) 

BIG THANK YOU to 5 of our neighbors who bought them already!! It really is a great deal! The kids were soooo excited to go around and sell them! I was surprised that they were not shy about it at all!! LOL We did half the neighborhood the other day, and we will do the other half tonight or another night:)

As for a CF update...Lil' Chris is doing GREAT!!! He got something new that is kinda cool...but I'll save that for my next post;P

Please pray they both have a great, happy, HEALTHY school year!!!!
Thanks,
M
PS. It's kinda nice having time to blog again:) lol

Disney 2012 Vaca Photo Book

Check out this Photo Book we made by Shutterfly of our 2012 Disney Vacation...(better late than never, right??) LOL

Click here to view this photo book larger

Shutterfly photo books are the new way to preserve your memories. Create your own today.

Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

Fun Weekend Project!!

Here it is....

 Lil' Chris and Ayla helping:)

 This is just steps 2-12 out of 35 steps of wood with their bags of screws and nails(lots of prep work)

 My sheet to organize each step;) LOL

 Our AWESOME neighbor, Sean, was a HUGE HELP!! THANK YOU SEAN!!

 Lil' Chris helping:)

 Lil' Chris helping get the roof started:)

 Ayla is on the 2nd floor, and the Chris' are on the 3rd floor;) lol

 One roof is up!! It's so cool that Chris and I can stand up straight on the 2nd floor:)

 Chillin while Daddy and Sean put on the 2nd roof:)

 About to put on the swing part!!! YEA!!

 Playing while Daddy puts the picnic table together:)

 Ayla swinging while Lil' Chris was at his last day of JKindergarten. She was happy to have it all to herself:)

 They go pretty high! Their heads go above the 3rd floor!! This is their favorite part...the yellow swing;) LOL

 Having their 1st picnic at their new picnic table:) It's kinda nice in the shade behind the rock wall and slide!

 Spying on me with their telescope, and Ayla driving the ship with the wheel!!

They couldn't be happier:) The smiles on their faces every time they play on it, makes it all worth it:)

TOBI/Cipro Update & Reading!!!

Lil' Chris finished his Cipro the other day and only has a couple more days of TOBI left! YEA!!!!!

He still is doing GREAT and doesn't even have a cough or anything!! You would never know by looking at him that he has some bad bacterias deep down in his lungs just looking to cause some major trouble.

It was rough this 2nd time around with the TOBI, b/c for some reason it took longer to administer than the last time he was on it. I looked back on my blog, and on 11/10/12, I blogged that it only took 13-15 minutes for the TOBI, but this time around it has been taking like 25 minutes! That's a big difference for a little kid! Even Lil' Chris started complaining by saying, "I don't want to do TOBI, b/c it takes too long!" Poor kid. I think it might have been b/c Nurse P sent us the wrong neb cup. It was the same, but it came with a different mouth piece(one to attach to the mask, which we don't use), so we took the mouth piece from the last one and used that. We washed the old neb cup a couple times, but it still had that hard residue on it that wouldn't come off down in the bottom:( I guess we didn't wash it well the last time we used it...prob b/c we were thinking we would never have to use it again...wishful thinking I guess. Oh well, lesson learned.

He has a cf clinic apt on 2/20 where he will get his 3 month check-up and another throat culture to see if the Pseudomonas is still there. If so, then we will do TOBI every other month, but not Cipro. Praying for no Pseudo or anything worse!!!

On a good note...he has been doing really well with learning to read!! I've been working with him the last few days and he can now read 30 words!!! Tonight he read most of a book to me at bedtime! I was soooo proud of him!! I made flash cards with site words on them. We started out with 10 words the first day, and then we have been adding 10 more words each day! He's doing really well! His incentive...a freeze pop:) This kid is easy:) LOL We are praying he will get to move onto 1st grade next year and not have to go to all day Kindergarten. Right now he is in 1/2 day Kindergarten. 

We might be able to skip Preschool for Ayla, b/c she can identify all the letters, colors, shapes, and has been reading words too, b/c she has been watching me teach Lil' Chris!! We even play games as to who can find the word the fastest! I love it!! They are both so competitive and this helps keep Lil' Chris focused:) Ayla is very bright for her age...she knows the order of the rainbow(I didn't even learn that til I worked retail and had to learn to merchandise LOL:), and can tell you who's birthday is next..."Forst, it's my birfday, then Mommy's, then Chris', then Daddy's!" is what she says:) She just needs to learn to talk right. She says "f" for "th" and "o or y" for "L" and a couple other that I can't think of right now, b/c it's late;) If you ask her to spell her name it sounds like "Ayoa", but she says "yike" instead of "like". LOL I've been trying to work with her on that, but she gets frustrated and angry when I correct her. Oh, and she skips the number 13 when counting, and when I asked her why, she said that she can't say it, she just gets embarrassed...poor thing. It's a work in progress, she'll get there.

Thanks for all your prayers,
M
PS. Please keep Tricia(adult CFer) in your prayers as she was not able to get listed yet for a double lung transplant that she desperately needs.  Also please pray for Stacy A. from my work with Bronchiectasis, which is like CF. She hasn't been feeling her best and had to get a Picc today:( Get well soon, Stacy!!

Soooo Needed to Vent...Pseudo is back for 2nd time;(

Sorry it's been awhile since my last post. The kids and I have had fun playing with their new Christmas toys:) I can't get enough of these kids :)

Thank you to everyone who has still been checking in on the blog! We DID end up hitting 40,000 hits before the end of 2012!! WOOHOO!!!

Ayla's medicine worked and her cough went away, thank God!! Lil' Chris never caught it, PRAISE THE LORD!!!! He has been cough free!! Everyone here is well, no coughs and no colds...knock on wood;) The flu has been going around like crazy at work. Please pray that none of us get it, esp Lil' Chris. It could put him in the hospital.

We had a FANTASTIC Christmas, New Year, and even got to play in the snow and go sledding!!! I posted pics and video's on fb. One of these days I'll try to find some time to upload some video's on One True Media again:) It's just very time consuming since this laptop is so slow. I've started so many video's, but then gave up b/c I get too frustrated and I don't want to break a window by throwing my laptop thru it;p LOL

Lil' Chris got his ski's that he asked Santa for, and Ayla got her Minnie Mouse dressed in Christmas PJ's that she asked Santa for:) Too funny:) Lil' Chris also got a new 3DS XL and lots of games for it. He LOVES playing it and even tried to sneak it into bed with him Christmas night:) LOL Ayla got a new big girl bed!! She loves it b/c it has a slide and a lil' playhouse underneath:) Now she has a Minnie room:)

They also got their own tablet, so now maybe Mommy can actually touch her iPad;) LOL They both LOVE it!! Ayla calls it a tabalet:) LOL When she wakes up in the morning, she comes quietly into our room and grabs the tablet or iPad off the charger and then either goes in her room or goes downstairs and plays quietly til we all wake up:) She is such a good girl!!

As for a CF Update on Lil' Chris...at the end of December, we went to the CF clinic to get a throat culture to see if the Pseudomonas is still there after doing his first round of TOBI...well, did we have fun on that trip!!! First off, my husband couldn't get that day off, so I had to take the 2 of them all by myself and I HATE driving up there! Second, we were only 10 minutes away and Ayla decided to pee in her pants...yeah...sooooo much fun!!! So of course I have no extra clothes b/c she has been potty trained for over a year! So I call the clinic and tell them I'm going to be late. Then I pull over and search in the GPS(thank God I had a GPS!!) for the nearest Walmart. I start driving and then I see a Kohl's closer than the Walmart, so I go there. 

So after that, we start heading back and the GPS can't find the stinkin clinic!! It kept taking me in circles!! I had just about had it, if you can imagine! Finally I find it and we get there and have the appointment and get his culture. I honestly contemplated just turning around and going home once Ayla peed, but I didn't. It's a good thing, b/c I told the nurse that he has been getting tummy aches and that his stool was oily once. So she called in the dr and she felt his tummy and could feel something. So she upped his enzymes to 4 or 5 instead of 3 every time he eats. He has been on 3 for a long time, maybe since he was 2, so about 3 1/5 years. My husband and I figured that's what they were going to do, we almost just started upping it ourselves. So he now gets 4, but if it's lots of cheese or something, then he gets 5. So far, he has been doing better with that.

So Lil' Chris got his culture by a new guy I think, b/c I had never met him before. Then as we were leaving, we passed some workers in the hallway that had a huge cart of toys and they told the kids to pick whatever toy they wanted:) Their faces lit up!! Ayla got a dr doll and Lil' Chris got a batman toy. They also got coloring books and markers from our fav nurse at the CF clinic, so it turned into a better day after that:)

That is until.....I didn't hear from them about the results and when I called, I find out that they "threw away" his culture!!! I was livid!!! Esp after all we went thru to get there!!! So we had to make another appt to go all the way back up to the cf clinic to get ANOTHER throat culture! I asked again if we could just get it done at his pediatrician, but the nurse said no, that the clinic does it "different"...idk, whatever at this point. 

So we go to the cf clinic on January 2nd and get another throat culture. Of course Nurse P was there and did the culture herself. She came in our lil' tiny room and goes right up in Lil' Chris' face while he is sitting on the table or whatever you call it, and she proceeds to open the stuff to do the throat culture. THEN she goes over to the counter and starts putting her gloves on and says "I'm gonna put a mask on b/c I'm fighting a nasty cold." I about got up and smacked her!! She was JUST in Lil' Chris' face with NO mask and touching the stuff that was going into his MOUTH without gloves!!! I couldn't believe it!! 

So she does the culture, then what does she do....she takes the mask OFF and proceeds to talk to us about how she is calling a meeting b/c they threw away the last one and blah blah blah....Seriously lady??? The room is like 4 x 4 and your gonna stand there SICK and talk to us with our CF son?!?! I was so shocked I couldn't even talk! I just tried to pretend like I was putting his coat on and tried covering his head until she left. I WAS FUMING MAD!!! I told my husband that if he gets sick from her, I was going to let her and the clinic have it!! 

Fortunately he didn't get sick. But I have started a list of all these things to put on the survey that they make us fill out each year. I'll let them have it on there for sure!! And if something like this happens again...I will not hold my tongue!! I will ask to speak to the director pronto!! And can you believe that they didn't even offer to validate parking?? I would've said no, but the offer would've been nice since they made us drive all the way up there for ANOTHER culture b/c THEY threw it out by mistake! So fed up right now!

Now onto even worse news...we finally got his culture result back and unfortunately he cultured Pseudomonas again:( :( :( He will be on Cipro and TOBI again. Not really sure where to go from here, since I got this news on my Voicemail AGAIN!!!! Seriously thinking about switching CF clinics after all of this. I may make some phone calls on my next day off. Honestly...if it's something this important...CALL ME AT WORK!!!! This is 2 times in a row I have found out that he had Pseudomonas from my voicemail!! Unbelievable! So now I have to take my whole 1/2 hour lunch break at work to make phone calls to find out how to get the TOBI, b/c I guess they changed it starting this new year and we can't get it at CVS now. Also, I have lots of questions for the CF Clinic, as you can imagine. If they would've called me back right away today, I could've done this, but now I have to work the next 2 days, so it's going to be hard to get all this done!!! ARGGGGG!!!

Anyways, thanks for letting me vent. This 2nd culture of Pseudo is baffling me. Is it his new school?? I know his teachers are very good about sanitizing his hands often. They even wear the sanitizers on there hip like I do! Is is from the Pulmozyme?? This is something new we started this year, so maybe the Pulmozyme has something to do with it?? IDK. It could be anything I guess. I just pray that this 2nd round of TOBI and Cipro knock it out so he doesn't have to do it every other month.

The weird thing is...he's not even coughing! But I guess that doesn't mean that those bad bacterias aren't still lurking around in his lungs doing bad things. Please pray we figure this out and that it doesn't lead to worse things. His next clinic appt is Feb 20th.

Thanks,
M 

CF Update / Ayla's still coughing :(

Lil' Chris is still doing VERY well!! NO COUGH STILL!!! WOOHOO!!! THANK YOU SOOOO MUCH FOR ALL OF YOUR PRAYERS!!! KEEP THEM COMING!!! I've even gotten him to eat a little bit more!! It helps that I have all their Christmas presents bought and wrapped, so I can bride him to eat more. It's worked so far... he ate 7 chicken nuggets one day, and he ate a small bowl of mac n cheese another day just so he could get a present afterwards!! He NEVER would've touched the mac n cheese if he wasn't going to get a present for doing it;-) LOL Plus, I don't mind giving them early gifts anyways, b/c that way they get played with more, since Christmas day is a little overwhelming with a TON of presents...if you know what I mean:) lol

Ayla still has a nasty cough:( I took her back to the dr's yesterday, b/c she finished the 5 days of Azithromycin and still had a nasty cough. The dr put her on another antibiotic, Augmentin. She doesn't like the taste, but she has to take 5ml 2x a day for 10 days. Praying this will kick her cough out! The dr probably wouldn't have put her on anything, but b/c of the risk of Lil' Chris catching her cough, she decided to go this route. The Azithromycin is supposed to keep working like 5 days after you get done taking it, so hopefully with the combo of these 2 antibiotics, she will get better. The dr. also wants to see if the combination of the Albuterol puffer and the Augmentin will work well together, so she is doing the puffer in the am and pm and when needed. Ayla has a PURPLE spacer/chamber for her puffer:) She likes that! When I gave it to her last night for the first time, she said "Now Chris and I can do our medicine at the same time!" Too cute:)

We are very close to 40,000 hits on this blog!! WOOHOO!!! Can we hit 40,000 by the end of 2012??? Pass this blog along to your friends and family!! We could always use the extra prayers;)

Thanks, and I'll let you know how his dr appt goes on Monday. Praying for NO PSEUDOMONAS!!!
M  
PS. Lil' Chris had a bad night last week. We think it was from some cheese curls he had. The bag didn't say it had Soy Protein, but he was throwing up all night like he normally does when he has Soy Protein:( He missed school that next day, but has been fine since thankfully. 

CF Update / Ayla has a cough:(

Lil' Chris is still doing great! No cough! His nose is a lil' stuffy, but NO COUGH!! YEA!! 

Ayla, on the other hand, has a HORRIBLE cough right now:( She is on Azithromycin and the dr gave her a ProAir puffer like Lil' Chris for an as needed basis. So far, she hasn't needed it. She had a fever there for a couple of days, but seems to be getting back to herself now...other than the cough not going away:( 

Please pray that Lil' Chris doesn't catch her cough, and that Ayla's cough goes away soon!!! He goes for another throat culture one week from today to see if the Pseudomonas is still there. Pray that it's not!!

I really like how we switched his Pulmozyme neb to nighttime! It makes the morning go by soooo much easier, esp before school!!!! But I'm glad we originally started it in the morning, b/c it made doing the TOBI in the morning not so bad, b/c we were already used to doing a neb in the morning:)

Hope you are all doing well!! Thanks for all the prayers!!
M  
PS. My toe is almost completely healed!! Thank God I had that surgery/procedure, b/c I got like instant relief!! That was the most painful thing ever!! Taught me a lesson though...never get distracted while cutting your toenails and slip and cut too far on the corner! Even though I could see the corner of the nail, the dr said that somehow some part of the nail was puncturing my skin, which was causing the discomfort. I pray it never does that again!! Best part is, you can't even tell I had the surgery!! :)

Kiddos Update:)

Lil' Chris is still doing GREAT with his TOBI and Cipro!! So proud of him!! He is still coughing a lil', but not like a cold cough, so that's good:) We have switched to doing his Pulmozyme at night now instead of the morning and it seems to be working out okay so far!!

We took Ayla to the doctors yesterday for her cough and stuffy nose that she has had for like 2 weeks(her cough went away for a few days, but then it came back), and she got her first throat culture taken and she didn't even cry!!! GO AYLA!! She didn't cry when she got her flu shot the other day either!! Lil' Chris cried like a baby when he got his and he's 5 and Ayla is only 3!! ;-) LOL I think she was determined to beat her big brother. She said after he got his shot that she wasn't going to cry when she got hers...and she didn't!! She came close, but the tears did not come out! I felt bad for her, b/c you could tell it hurt her and she really wanted to cry:( She's one determined lady though! Just like her momma;)

So today, I got a voicemail from her dr saying that she did not culture Pseudomonas like Lil' Chris, but she DID culture Strep Throat! ARGGGG!! So now she is taking Azithromycin 5ml once a day for 10 days. We were kinda shocked she cultured this, b/c she's been acting fine and has not complained of a sore throat and has just had a cough, except one day she had a lil' fever for a few hours.

Please pray she gets better soon and that it doesn't spread to the rest of us, esp Lil' Chris...he's got enough going on right now.

The kids are soooo excited that their cousins are coming next week for Thanksgiving!!! Only thing is...Lil' Chris has cultured Pseudomonas, Ayla has cultured Strep, and their cousin Nathan has Leukemia. I'm a little worried that they may get Nathan sick, which could turn out very bad for him. So, I sent a message to the CF clinic to see what they think, maybe the meds will work by then??? IDK, we'll see what they say.

Totally bummed that the CiCi's Pizza here in town closed a couple weeks ago:( That's where I did most of my CF fundraisers. Luckily the Alice Noble Ice Arena lets me do CF Education Days there during their after school program. I'm still able to make that an AiA event with Kohl's to get the $500 grant, so that's good!! When one door closes, another one opens:) I thank God that they allow us to do events there, b/c otherwise I wouldn't be able to raise $5,000 from Kohl's each year...btw, just one more event for this year and Kohl's will have donated $5,000 to CF this year alone!!! THANK YOU AWESOME KOHL'S ASSOCIATES!! Last year they did $5,000 too!! I can't remember exactly how much the years before that...a few thousand, I think:) Gotta love Kohl's!!! Speaking of which...I have a Friend's and Family coupon for 20% off starting this Thursday!! If you want me to email it to you, just send me a message or an email:)

Thanks so much for your continued prayers!
M

CF Update / Pray for Tricia

Thanks so much for all the prayers everyone! 

Lil' Chris is doing MUCH better!! His cough is gone and his nose isn't stuffy anymore!! 

Praise the Lord!!

He still has a lot of pills left for the Omnicef and alot of the flonase left. We've stopped the flonase, but are continuing the Omnicef. Usually when we get the liquid antibiotic it is only for 14 days, but this pill form was for 21 days. I'm just VERY thankful that his cough is gone. 

Ayla's cough is gone too! Her's was kinda bad too. We all got that cold, but are all better now! YEA!! 

I had a procedure done on my toe this past Monday, and it is doing much better so far!! After 1 1/2 months of excruciating pain, I was ready to do anything to make it go away. Unfortunately, I had to stop running everyday, but.....before I had to stop to let my toe heal.....I reached my goal of running every single day for 2 whole years straight!!! WOO HOO!! I missed 4 days b/c the dr said to rest my toe, and I missed one day b/c I had a stomachache and was waiting for it to go away, but then I accidentally fell asleep;) LOL Oh well, not bad for only missing 5 days in 2 years(other than vacations where I didn't have my treadmill;)

Please continue to pray for Lil' Chris. Also please keep Tricia in your prayers still. Her husband Nate said that the dr's told her how close she is to dying. This just breaks my heart! She was the first CFer I knew. I followed Nate's blog religiously... www.cfhusband.blogspot.com. She and Nate were why I started this blog. Pray she gains weight and strength to be listed for a 2nd double lung transplant. I think the reason I connected with her the most, was b/c of her love for the Lord. She always gave praise to God even at her worst times. I admire her sooooo much!! 

WE LOVE YOU TRICIA!!!

Thanks,

M

1st Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
M

Thirty-One CF Fundraiser Results

Hopefully this posts, I've tried like 20 times to post it and have had to re-type it 2 times! ARG!!! Sorry it took so long to post, but here are the results...

WE REACHED OUR GOAL FOR THE THIRTY-ONE Fundraiser for CF!!! WOOHOO!!! THANK YOU EVERYONE WHO ORDERED SOMETHING TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!!...

Danielle

Chantel

Jeanette & friend:)

Andrea S

Stacy W

Samantha C(fellow CF mom:)

Rachel M

Barb N

Stacie M

Amanda P

Samantha S

Margo F

Donna H

Steph W

Sue D

Rebecca G

Melissa C(fellow CF mom:) 

Carrie G

I can't begin to put into words what it means for all these girls to support Lil' Chris like this!!! It means soooooo much!! BIG THANK YOU to Carrie for donating her whole commission for A Cure 4 Lil' Chris and ALL CFers!!! You're the BEST Carrie!!! :)

Our goal was to have $1,000 worth of products ordered so that we could raise $250 plus the $500 from the Kohl's team for helping out at the fundraiser, which equals to $750 raised for a CURE for Cystic Fibrosis!!! WE DID IT!!! WOO HOO!!!!!!  

We have surpassed my personal goal of $5,000 now for our walk for CF!!! We are at $5,673.90!!! Woo Hoo!!!
We have even passed our team goal of $7,000 too!!! It doesn't show it on my Great Strides page yet, but we are still waiting on about $2,000 to come from Kohl's grants from my CF fundraisers! Kohl's alone has donated $4,000 so far this year!!!! AMAZING!! My goal was $5,000 like last year, so I better set up 2 more AiA events;-) We couldn't raise that much if it wasn't for my awesome Kohl's employees!! They are the BEST!!!! 

Here are some pics of the kids modeling our new Thirty-One bags. They LOVED their bags!! Ayla said "That's A for me!!!" LOL(I got her initial on one of the bags for her;)

Thank you again everyone!! I'll probably do another Thirty-One fundraiser for CF next year, or when people start asking me to do one b/c they want to order some stuff;-) I already know one friend who wants to order some more:)
M
 PS. If you missed NY Med about the 26 year old girl with CF, click this link to watch the episode(it shows other people too, but you might be able to fast forward through them if you don't want to watch them too)...http://nymedshow.com/episodes/episode-6

Pulmozmye Update, 4th of July Pics/Video's, and Swing Flip

Lil' Chris is doing GREAT with this new nebulizer routine!!  He doesn't mind it at all, and on day 2, he actually asked to do more afterwards;-) I told him it's only one time a day and he got a lil' sad. What a kid! He takes any new thing the dr.'s throw at him SO well!! He AMAZES ME!!

I, on the other hand, am still getting used to it. I'm surprised I haven't forgotten yet since we have been so set in our ways doing the Vest in the morning. It really helps having the nebulizer machine right next to the Vest machine, b/c I've caught myself about to put his Vest on and then I see the nebulizer and I go and get the Pulmozyme out of the fridge real quick;-)

So, I'm still learning a lot thru this whole new process and luckily I have a GREAT CF community to help me out with all my silly lil' questions. CysticLife.org is so great to have around in times like these...

1. We are supposed to wash it afterwards with a clean paper towel and soap and warm water, THEN sterilize them after each use. Oops, didn't do that the first time, we just rinsed them.
2. You can't pour the Pulmozyme in the cup and then let it sit on the counter...it leaks :b Learned that the hard way!
3. Boiling water is HOT!!! I about burned my fingers trying to fish them out of the water after it was in the microwave for 6 minutes and I even let it sit for a couple of min before I tried to get them out!! OUCH!!
4. Lastly, it's hard to tell when the medicine is done. I try to shake it towards the end and then more comes out, but still it's hard to tell and I hate to waste any esp since it's outrageously expensive! Thank the Lord for BCMH!! Please pray we never lose BCMH!

I hope you all had a Happy and Safe 4th of July!! We had a great time at the pool and BBQ at Oma and Opa's house with John, Andrea, and Kennadie!! Afterwards, we went to the soccer fields where we have our CF walk every year, and they had some special things going on, and one was the kids got to sit in some army vehicles and got to turn them on, honk the horn, and step on the gas!! They LOVED it!! They kept asking where their buddy Spencer was and if he drives these :-) I think they are going to have lots of questions for Spencer when he returns home from the army in a month or so;)

Here is a pic of the kids about to watch the Children's Hospital Helicopter, "Air Bear", take off. They liked exploring inside of it, while I secretly prayed they would never have to use it!!

Here is a video of the kids watching the helicopter fly off. It takes a while, but at the end they pray with me that they never have to go in one of these. Too cute...and sad knowing that it's a possibility for Lil' Chris someday:(

After that was fireworks time!! They covered their ears until half way thru, but then they put their hands down and realized it wasn't so bad after all;-)

Well, Lil' Chris continues to do GREAT!!! He is having no side effects from the Pulmozyme and I think he is coughing less too now that I think about it:) YEA!! Right now, he is having fun playing outside on his swing set:) 

On Tuesday, we went looking for a nice new swing set since he loves playing on his tiny old hand me down one, but my goodness they are expensive!! The one we want is white plastic over wood, so then we don't have to worry about splinters, or any mold or rotting or having to stain it each year, but it's like $4,000!!! YIKES!!! Of course it had to have a lil' playhouse which Ayla LOVED, b/c it had windows and a door:) She kept going in it and wanted us to knock to come into "her house"...too cute!! Oh well, maybe some day. On second thought...we might need one sooner rather than later, b/c he just almost flipped the whole swing set by swinging too high, and he just taught himself how to do flips, which is ok, but I'm afraid he might hit his head, and he loves hanging from the top...I guess there's not much else to do with it. LOL I think he needs a twirly tube slide, a rock wall, a rope wall, a horse swing thing, and a much taller, faster slide! He would be in Heaven!...and so would Mommy knowing it's much safer :) lol

Here is a video of Lil' Chris trying to make the best of his swing set(which we are very grateful for, otherwise they would have had nothing all these years, he's just outgrown it now;) and of course him doing a flip!! He was so excited the first time he did it!! I just can't believe he taught himself and he didn't hit his head! Still scares me!

Thanks for checking in with us and please keep your prayers coming!!

M

PS. Remember baby Chaia?? Well she just turned 1 the other day!! Amazing what prayer can do! Thank you all for praying for her, she still needs it as she has a long road ahead of her. Also, please pray for some fellow CF friends...Phennyman and Tricia. Phoenix had surgery the other day and is still in the hospital, and Tricia is going thru so much right now, she has an infection in her sinuses and she continues to loose weight and her breathing difficulties are increasing. Her husband, Nate, keeps a blog about her(which is what got me to start this blog so many years ago;)...www.cfhusband.blogspot.com. Please keep their families in prayer too. Thanks.

Annual CF Clinic Visit / CiCi's CF Fundraiser Results

Lil' Chris had his annual CF clinic visit on May 16th and he had a GREAT report! Lungs are CLEAR!! YEA!! For those who don't know, CFers go to a special CF clinic, usually at a Children's Hospital, every 3 months for a checkup. Then every year around their birthday, they have their annual visit, which is when they go over EVERYTHING!!! These visits usually are 2-4 hours long;( We have to prep for this visit by getting x-rays and blood work done beforehand. They said that his blood work looked GREAT!! The Dr. also said his x-rays looked GREAT too!! They aren't 100% clear in the pics below, but she said she didn't see any scarring yet! BIG YEA!!!!! Here are the pics from the past 5 years, one year was missed, not sure how that happened??....

5/21/08

6/16/10

3/16/11

4/4/12 First time standing up while taking x-ray

Click here to go to the post where he got his last x-rays taken standing up.

His weight went up from 41.2 to 43.8 and his height did too a little from 44.5 to 45 inches. His weight was in the 74th percentile(up from 66th last time, 3 months ago) and his height the 90th percentile(down a little from 92) and his BMI the 40th percentile(up from 20th percentile last time:) The doctors like CFers to be at the 50th percentile or higher for BMI, so this big jump is so nice to see!!!

The doctors made no changes to his meds, but they suggested we up his pressure to 5 instead of 4 on his vest for the first 20 minutes of his 30 minute treatment. We changed the setting on our Vest and he is handling it fine:)

Now that he is almost 5, every clinic visit(every 3 months) he will have to do a PFT(Pulmonary Function Test) which they will keep track of. Up until now, he has been practicing for it, but now they will keep it on record. Most kids can't even do it at age 4, they always are impressed with him:) He did a GREAT job and scored a 99 for his FEV and a 93 for his FEV1! Pretty good, but we want 100%!!! :) Next time...next time! You'll see in the video that he got one good one in the beginning, but he got tired after that. He's still learning. What he has to do is take a really deep breath and then blow out as hard and as long as he can. He's getting there:)

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He got a throat culture taken too. He impresses me every time when he doesn't cry or anything!!! I guess he is used to getting it done every 3 months now. It surprises me that he doesn't say things like, "I don't want to go to clinic, they will try to shove a thing down my throat!" He never complains, even though he knows it's coming! He just takes it like a man! :) That's my boy!!! I will let you know when I get the results from it. He didn't have a cough going into this visit, so I'm not expecting any bad bacterias, but you just never know with Cystic Fibrosis. That last antibiotic finally kicked out that wet cough he was having for what seemed like months! He coughs every now and then, but it's dry, so I'm not worried about it. I'm so glad that I pushed to get him on that antibiotic, b/c they fought me on it saying it was just allergies. Please pray the results come back clear or no new bad bacterias!!

So the doctor never ended up having him try the Pulmozyme for the first time in the doctors office like I was told. I guess that was just if we went with HTS instead of Pulmozyme, b/c some kids have reactions to HTS. My husband wanted to know if we could start it after vacation, and the dr saw no problem with that since it's only another month. I was kinda excited about getting started and going on vaca for the first time with it, but I guess it will be easier without it and that will make this our last vacation with no breathing treatments. Makes me sad when I think about it, but this Pulmozyme will be good for him. We want his lungs to be as healthy as they can be for when that CURE comes!!! Studies have shown fewer hospitalizations, lung infections, coughs, and antibiotics with the daily use of Pulmozyme, so I am ALL for that!!! I will post pics and videos when we do start it though:)

After our clinic visit, I had a CF fundraiser at CiCi's Pizza! BIG THANK YOU to my fellow Kohl's associates for helping out so that Kohl's would give a $500 grant!!

THANK YOU...

Jill P.

Kathleen S.

Jill S.

Laura T.

You girls are the BEST!!!

I was raffling off 2 tickets to an Indians game and we raised $170!!! Woot Woot!! Our winner of the raffle was our good supportive friends from church, Stephanie and Clay!!!! THANK YOU GUYS SO MUCH FOR YOUR AWESOME DONATION AND FOR COMING OUT TO SUPPORT US!!! They have also signed up to walk with us on June 9th at our Great Strides walk!! Stephanie has been posting her Great Strides page on Facebook and everything to help raise money!! We can't thank you enough Steph!! You'll be surprised as to how many friends and family will donate when you tell them about Lil' Chris!! Small amounts from each one adds up to a lot!!

So our total for the night including the raffle, the Kohl's grant, and the percentage from all the customers receipts was around $730!!! WOO HOO!!!! THAT'S AWESOME!! Special thanks to our neighbors Tiffany and Ryan and their kids for coming, and also Lil' Chris' teacher Ms. Carrie and her husband Justin for coming!! Thank you all for coming to support Lil' Chris and for your generous donations for A Cure 4 Lil' Chris and ALL who suffer from Cystic Fibrosis!! 

BIG thank you to everyone who donated that night at CiCi's!! Cystic Fibrosis is not funded by the government, so these fundraisers that us CF parents do are soooo important in finding that CURE!!!

My next CF Fundraiser will be at the Wooster CiCi's Pizza again on Tues May 29th from 5p-8p!! Raffle will be 2 tickets to an Indians game of your choice!!!

ALL are invited and please help me spread the word, either my word of mouth or by Facebook!!

Thanks again for everything!! Keep the prayers coming!!

M

PS. Garage Sale/CF Bake Sale Results coming soon:)