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

2/20/13 CF Clinic Visit / Fundraisers

 YIPPEE!! Doing TOBI for the last time ever, hopefully:)

 3 month check-up, 5 1/2 yrs old

 PFT(Pulmonary Function Test)

Lil' Chris had a GREAT 3 month check-up at the CF Clinic yesterday!! His weight was 46 lbs and 9 oz and his height was 47 inches. At his last visit on 10/24/12, his weight was 46 lbs and height was 46 inches, so he grew a whole inch!! No wonder I had to buy more pants for him for school!! LOL His BMI was 30 and now it is around the 35th percentile. The dr said he is doing well still b/c he grew so much. His PFT last time was 97/92 and this time 96/91, again, they said this was still good since he grew so much:) We'll take it!!

On the way to the clinic, he asked me if he was getting any shots at the drs and I said no. Then he asked if he was getting a throat culture, I said yes, and he said "Yea!! I LOVE those!!" Gotta love this kid!! How he can love it when they shove something down his throat like that is beyond me!! But I am VERY glad he doesn't mind it:) It makes my job a lot easier;)

Lil' Chris was VERY excited to tell the dr that he has been eating more foods...he told them how he ate FOUR slices of pizza the other night, and how he LOVES Mac n Cheese with cut up hot dogs in it now!! He calls it his Favorite Mac n Cheese and Favorite Pizza :)

He was also excited to tell his dr that he can now read over 50 words!!! He even read some to the drs, since that's what we were doing in between all the drs coming in and out. I was telling the drs that we just had a conference with his teacher that morning about whether or not he is ready to move onto 1st grade next year or not. He is a little behind the other kids, and that's my fault, b/c I haven't worked with him enough on reading and everything else. I've been trying really hard to work with him everyday and in just one week he has made HUGE strides!! If we keep it up over the next 2 months, he may still be able to go to 1st grade. We'll see. 

He seems to do well with me, but in class I guess he doesn't participate much. And when the teacher does one on one with him, it's very hard to get the answers out of him. We aren't sure why. Maybe b/c he is shy, maybe b/c he is afraid he will get the answer wrong, maybe b/c he has anxiety about it or something...not sure. The dr suggested that he may know the answers, but has a hard time expressing himself, and that maybe he should see a Speech Teacher/Therapist or something to see if that would help. I would hate for him to be held back a year, but if it's best for him, then we will. I don't want him to struggle every year trying to catch up. I just hate thinking that he won't graduate until he is 18 instead of 17. With his life expectancy already short, I just hate for him not to get out and live life as soon as possible...on the other hand....it gives me one more year to somewhat control his meds and make sure he is taking them;) God knows best, and whatever is His Will, we will go along with it and be happy:) It was cute when the dr asked him what his favorite book for Mommy to read him is and he said "The Bible." :) Last year when his teacher told him to bring in his favorite book, he wanted to take his Bible...one proud Momma here:)

We took his Acapella to the drs and the PT said that he is doing it well, but should breathe longer when doing it and count to five when breathing out and when huff coughing. She also suggested that we should do it after each of the 3 sets on his Vest, but we don't have to. I don't see that he needs it right now, since he isn't coughing, but when he does have a cough, I def agree! I told the dr that I can't remember the last time he's had a cough! I LOVE it when that happens:) When I looked it up on my blog, it's been 4 months since he has had a cough:) YEA!!!

I asked the dr why it took longer this 2nd time around on administering TOBI and she said to check the setting on the compressor. It should be set at 40 or 45. In the hospitals they use 50, but it might make the hose pop off. So I checked ours and it was a little below 40, so I changed it. To check it, all you have to do is turn it on and put your finger over where the air comes out and look at the gauge and turn the knob. We have the Moblaire 50psi compressor. We LOVE it!!

I had to cancel my Arbonne CF fundraiser for tonight:( I only had one or 2 people say they would come. It's my fault for trying to do it on a Fri night. What was I thinking??? You can still order online until 3/1 and 35% will go towards a CURE for Cystic Fibrosis!! Just let me know! Check out what they have at Arbonne.com. From what I hear...those who use Arbonne products swear by it and won't use anything else!! The party has been rescheduled for Thurs March 7th at 6p at my house. We are going to do a Spa Day!! So get ready to be pampered girls!! I can't wait!!

My next CF fundraiser is on Tues March 5th at my house at 7pm for a Thirty-One Party!! YEA!! Last time we raised $750 for CF!! Hopefully we can do it again! Click here to get started shopping and ordering today!! 

If you haven't signed up to walk yet, click here to register under my team, or you can start your own team and be a team leader! The walk is on Sunday May 5th at 11am at the pavilion by Ida Sue School!! 

 My birthday is this Sunday, and all I want again this year is a CURE for Cystic Fibrosis!!! So please click to donate!!! It sure will make my day:)

I will let you know his culture result when I get it. I will call them next week to find out. Please please please pray for no Pseudomonas!!! If he cultures Pseudo again, then he will be on TOBI every other month...which means an hour of treatments in the morning and at night:( :( :( His next 3 month check-up is on 5/8/13 at 10:50am, a few days after our walk.
Thanks,
M 
PS. My husband and I will be working on the new CF commercial soon for our walk:) YEA!! 

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M

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:)

"Change for CF" Results and Party

Today Lil' Chris' preschool had a pizza party for all the money they raised for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis! It was an honor to join them in their pizza party and watch his friends celebrate in raising $173.57 to help find a CURE for CF!!! I loved watching Lil' Chris give his goody bags to his friends too as a thank you:) Ayla had fun at the party, she just joined right in:) LOL

Being protective of his lil' sis who joined their line:)

Being silly picking up Ayla

Pizza Party Time!!

He's the one who needs the calories the most, and he ate the least amount of pizza out of all the kids! LOL

He did eat his pretzels though :)

WOW!! LOOK AT ALL THAT CHANGE FOR CF!!! The kids did a GREAT JOB raising so much money for CF!!

Group pic with all the change that they raised!!

Goody bag for the kids as a THANK YOU!!

Lil' Chris passing out the goody bags to his friends:)

Ms. Carrie made this and sent it to all the kids to start the fundraising:) She did a GREAT JOB!! I love the pic of Lil' Chris! It's neat to see how much he has grown since the beginning of the school year:)

She also sent this home with the kids to get them to come to our walk on June 9th at 9am behind Ida Sue School!! One parent told me today that she signed up to be a team leader in honor of her friend in PA who has CF! What a GREAT way to support her friend and Lil' Chris!!

 

WE LOVE YOU MS. CARRIE!!!

 BIG THANK YOU to Ms. Carrie for setting up the "Change for CF" fundraiser and for inviting them to our walk, and BIG THANK YOU to ALL Lil' Chris' Preschool friends for bringing in change for CF!! We appreciate it soooo much!!! THANK YOU!!!!
M
PS. Lil' Chris has been doing great, no cough!! YEA!!! CF Clinic visit update coming soon!

CF and Cough Update / Ayla 1st Time Sneaking Downstairs :)

We kept Lil' Chris home from Preschool today, b/c his nose has been runny and he has been sneezing a lot....oh and of course his cough got worse...argggggg!!!! Not sure if it's allergies or a cold yet. He did have a sore throat after school on Wed though. Please pray his cough doesn't get worse and he doesn't get any scarring or bad bacterias in his lungs. We are going to get his chest x-rays done next month, so we will see if they are still clear or not.

On a good note, Ayla has been getting out of her bed all by herself now!! YEA!!! She doesn't call us anymore to get her out!! WOOHOO!! Only bad thing is....in the morning she freaks me out by just standing next to my bed starring at me til I open my eyes!! Too funny!! Her brother used to do the same thing and still does sometimes:) LOL

At nap time she comes down all by herself too:) Above is the first time she came down by herself and peeked over the ledge, just like her brother used to and still does sometimes:) Click here to see the post of Lil' Chris' first time peeking;)
M
PS. I'm going to see Hunger Games tomorrow WOOHOO!!!! Can't wait!!! :)

SURPRISE!!!!!

Here it is, our big announcement to the kids...

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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.

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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!!!

Update on Eating Chart, Vitamins, Cough, Ayla's Potty Training, & Chaia

Here's an update on Lil' Chris and his new eating chart, softgel vitamin, and cough...(and potty training update for Ayla;)...(and baby Chaia too;)

This pic was Week 2 chart(I can't find week 1 as of right now, but he did have 15 stickers Week 1!! YEA;-) Week 2 he had 13!! We made him write his name next to his sticker if he ate all that we told him to eat, and write "sorry" if he didn't:)
This is Week 3, our current week. He's on track to get another prize this week too!!:) He has some catching up to do with writing his name. He told me today that he will finish them tomorrow...too funny:) He really likes the fact that he knows his letters and can write them! I've been playing games with him to help him with his letters and he has been doing AWESOME!! Writing them....well....that's another story. I think he writes his name the worst in his class....hence the writing his name on the chart... ;)
Here is a pic of his new softgel vitamin, Aquadex...
They are HUGE, but he never gave us a problem taking them:) In these pics I compared them to one of his enzymes that he has to take with everything that he eats. He swallows 3 of those red and blue enzymes at one time with every meal, so I guess one big pill is no biggy to him;)
He has to take the BIG Aquakex once a day, b/c his body doesn't absorb the Vitamins A, D, E, and K in the foods that he eats. This big pill is filled with those vitamins!! :) I actually like the Source CF softgels better(they are the same color and size), b/c they didn't smell as bad as the Aquadex and didn't give him nasty smelling burps;0 LOL! As long as he's not complaining, I'll keep getting the ones that the insurance covers.
As for Lil' Chris' cough...he still coughs every once in a while. I wonder if this is the start of his CF chronic cough;( I hope not. His next CF clinic appt is Nov 16th. I pray it's gone by then, so I don't have to ask.

His preschool teacher called us this past Monday saying he had a bellyache and was in the bathroom for a long time. So we picked him up. I think it's a good idea that we up his enzymes at school from 2 to 3 for snack time, b/c he has complained of a tummyache a few times after school. The CF nurse and I had decided on 2 enzymes at school, b/c he doesn't usually eat much in a short amount of time. It worked well in the beginning, but maybe now he is catching on that he doesn't have all day to eat when he is at school:) I'm pretty sure that his bellyache on Monday was from eating like half a stick of butter at dinner the night before though;)....calories are calories, am I right CF mom's?? :) I can remember melting a tbs of butter in his baby food. Can you imagine adding extra calories like that to everything you eat?? Yet...Lil' Chris is STILL only 38 lbs!!!! So frustrating!! Ayla is almost catching him! They just got their flu shots the other day and she is now over 33 lbs!!!

Speaking of Ayla;)....I started a potty chart for her for nap time and bed time. She has been potty trained during the day for a long time, since she turned 2 I think, but not at bed time and nap time. I give her a sticker and a piece of chocolate when she wakes up dry. I'm pretty sure she only does it for the chocolate though;-) LOL!! So far, every time that I have been home with her at nap time and left her in her big girl undies....she has woken up DRY!! YEA!!! At bed time, I still put her in her pull-up and she hasn't woken up dry yet;( I think she has realized now that if she has her undies on than she shouldn't pee in bed, but if she has her pull-up on than it's ok to pee. I guess I'm going to have to try night time with just undies to see if my theory will work or not;-) Wish me luck!! LOL!! I would like to get her 100% potty trained before she turns 3 in January. We started potty training Lil' Chris at nap and night time when he first turned 3. He caught on pretty quick and hasn't had any problems since!! It's been WONDERFUL!!! I'm hoping Ayla catches on quick too:)

Hope to see you this Sunday to pray for Chaia's heart to heal(see past posts for details)!!! Please continue to pray for Chaia, she needs us all!! www.mustardrevolution.blogspot.com
M
PS. HAPPY BIRTHDAY TO MY AWESOME DADDY:) I LOVE YOU!! You still look 40 to me;-)

Keep Praying for Chaia / Lil' Chris Update

I can't stop thinking and praying for sweet baby Chaia....

My heart goes out to Shaina and Ben. Why does bad stuff always happen to good people???

Thank you to those who put Chaia's picture as your profile pic on Facebook yesterday:) Ben was right...Facebook never looked so cute:) If you missed it, the pic is above:)

Her big test, PET scan, that was going to be done yesterday got moved to today. Now it's just waiting for the results....sometimes that's the hardest part, other than watching your child suffer. This disease that she has hits a little home for me, especially since it's a genetic disease. Lil' Chris' Cystic Fibrosis is a genetic disease too.

Here is the link to Ben's blog again... www.mustardrevolution.blogspot.com

I also added a link to his blog on my side bar. It is at the top right of this blog below the header pic. You can see if there is a new post, or you can always click that link to get the latest updates on Chaia.

As for Lil' Chris, his antibiotic has been done for a little while now, but he still coughs every now and then. I'm praying it will go away on it's own. He is loving school (other than having to be woken up in the morning;) and he got invited to his first classmate birthday party!! YEA!!! He was very excited, esp since the invite was an Iron Man card...he apparently loves Iron Man right now;-) LOL

Thanks for all the prayers for Chaia and Lil' Chris,
M

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

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

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

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;(