Best Teacher / CF Walk Update / Thank You!!

HAPPY BIRTHDAY MRS. FALKENBERG!!!

It was a privilege to be a part of Lil' Chris' teachers birthday! 

She is such a wonderful woman! She gets the Teacher of the Year Award from me;) She really loves and cares for Lil' Chris:) She made a collection jar for CF and has been talking it up all year to collect change for CF! The jar is getting very heavy;)

She also has been talking up our CF walk coming up in just 2 weeks! We now have 7 families coming from the Wooster Christian School just to support Lil' Chris!!  

That's AWESOME!!! 

This is going to be our biggest and best walk yet!! Normally we have about 75 total walkers with all teams combined...this year I have about 80 just for A Cure 4 Lil' Chris team!!! That's def a GREAT feeling to have all the wonderful support!! :) I think I might have to get with Domino's about ordering more pizza's! I'm praying that they will still donate all of them:)

We have doubled our teams too! In the past we had 3 teams at our walk, Lil' Chris, Daniel, and Jack. Now we have 3 more teams! Aden, Aubrey, and Sophia!   
I'm sure we all have mixed feelings about having more teams...on one hand we love it that our walk is getting bigger and bigger, but on the other hand...that means more kids were diagnosed with this horrible disease known as Cystic Fibrosis:(
But I'm very glad to see that these wonderful CF parents are taking an active interest in their child's health by getting out there and raising money and awareness for a CURE!!! 

TOGETHER, WE WILL MAKE CF STAND FOR CURE FOUND!!!  

Thank you everyone who has signed up to walk and/or donated!! We can't thank you all enough!! 
If you haven't donated yet and would like to, just click the Great Strides Logo in the upper right hand of this blog and then "click to donate" or click "join my team" to register to be a walker:) Let me know if you have any questions!

HUGE THANK YOU to Carrie G and Stephanie W for doing the Thirty-One and Arbonne CF Fundraisers!! We raised a total of $1,350!!!! WOOHOO!! THANK YOU TO EVERYONE WHO BOUGHT SOMETHING FROM THESE 2 FUNDRAISERS:) WE GREATLY APPRECIATE IT!! AND THANK YOU CARRIE AND STEPHANIE FOR DONATING YOUR COMMISSION!! YOU GIRLS ROCK!! BIG THANK YOU TO MY KOHL'S TEAM FOR HELPING OUT AND GETTING US THE $1,000 GRANT!!
 If anybody wants to do a Thirty-One party or Arbonne party, let me know and I will hook you up with these amazing girls:)

BIG THANK YOU to Verizon on Milltown for sponsoring us!! You guys are AWESOME!! Look forward to seeing you at the walk!! :)

Thanks, 
M
PS. I have about 5 other posts all started, but not finished yet...big news coming soon...and more than just one;o

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;(

Newspaper Pic Tomorrow

Tomorrow us 3 CF Moms in this area are getting together at the place where we are going to have our Great Strides Walk, and a photographer from our local newspaper is going to take a picture of us holding 8x10 pics of our son's. The article is going to talk about how the CF moms are holding pics of their CF kids, b/c the kids can't be together b/c of cross contamination. It's also going to talk about when and where our walk is going to be. I'm SO excited!!

I sent the commercial to our local TV station, but haven't heard anything yet. I'm not even sure if I will hear anything! They may just start playing it! I'll have to keep an eye out;-)

Pray for good weather tomorrow:)
M
PS. I just thought about the shirt I have...a while t-shirt with a pic of Lil' Chris doing his Vest and underneath it says "I Love Lil' Chris". Do you think I should where this instead of holding the pic?? Let me know Alma and Mary;-)

CF Commercial - Final Cut

Sorry I haven't been blogging much lately, but we have been concentrating on getting this commercial done since our walk is fastly approaching.

This is the final cut, so hopefully everyone likes it. I'm going to send it today. We had to take out the music, b/c you couldn't hear my voice over it. That stink, b/c I really liked that song.

Let me know what you think!

M

Daniel Update

For those of you who have been with us for awhile, you have probably been wondering how Daniel is. For those of you who don't know who Daniel is...Daniel is 3 and is the first CF child we have met other than our Lil' Chris.

Daniel's mom is the first CF mom I ever talked to. Our clinic gave us each others phone numbers, b/c we live in the same town. I think Lil' Chris was about 2 months old when we had our first lil' CF mom meeting at my house. We just found talking to each other so easy, b/c others just don't understand sometimes. I thank God that we met, b/c without her, I would probably be a mess and not have confidence in how to raise Lil' Chris. But thanks to her and the stories she has told me, I don't feel alone in how I protect my son so much. You see, at first, I thought everyone would think that I'm just too overprotective of him. But she has made me realize that you have to be for his sake! She taught me not to worry about what others think. I remember her telling me stories like...when someone or her other kids friends comes to her house to play, she asks if they are sick. If they are, she tells them that she is sorry, but they can't be around her son and they can't bring the germs into her house. I love that! In the beginning, I would have been like..."Oh you're sick, well just try not to get Lil' Chris sick." But now, I have the confidence to say "I'm sorry, but we can't afford the germs in our house. A cold to you could be pneumonia to Lil' Chris and all kinds of hospital stays." So I just wanted to say THANK YOU DANIEL'S MOM, FOR BEING A GREAT EXAMPLE OF A GREAT CF MOM, AND FOR TEACHING ME ALL THAT I KNOW, AND FOR ALWAYS BEING THERE FOR ME WHEN I NEED A FRIEND!! YOU'RE THE BEST!!

Here is an update that she left as a comment on one of my last posts. I cut and pasted it, b/c I know not everyone reads the comments. Please pray for Daniel to get over this heavy breathing and cough really soon.

Hi M,I have my ability to comment again. I ended up setting a new password. Daniel is fine. Daniel had a first at clinic last week. He actually wore his mask from the car until we were in the exam room, and put it back on to go back to the car! His appointment went fine. They said his lungs sounded clear. I was surprised because he was breathing heavy and had such a cough. They put him on an antibiotic, increased his albuterol to 4 times a day, and we will find out if he cultured anything on Monday. The cough is getting much better, but he still sounds like he is running around when he is sitting still. I was thinking this morning that one thing I hate about CF is how it has eroded my confidence as a Mom. I always wonder if I am being vigilant enough, or am I worrying too much when he is fine. With my other kids, I feel confident, with Daniel I am constantly second guessing myself. How is Lil Chris? Any great plans for the weekend? Not much here. I am really looking forward to Tuesday! Daniel’s Mom

You're doing a great job with Daniel! Keep up the good work! That's great that he wore the mask the whole time!

I know what you mean about losing confidence when Daniel gets sick. I do the same thing with Lil' Chris, but at least we are here for each other and now we know more CF moms to help give us great advice.
M

Susanna's Comment

Hey Everyone,
I wanted to post Susanna's comment(hope you don't mind Susanna:),b/c she gave a WAY better explanation to the cross-contamination than I did. She even taught me something ; ) Thanks Susanna! Plus, I don't know about anyone else out there, but I was always curious about 2 siblings having CF. Thanks for explaining Susanna. It kinda put my mind at ease a little bit, if we were to ever have another CF child ;)
Thanks for also telling me about the beaded necklaces. I wondered if they did something like that. I guess I'll find out in a few days if they do that at the walk that we are going to. I definitely will suggest that for the walk we start here in our town next year(I'll explain later).
I will be praying for Janna and your whole family. Just remember, the Lord is always in control. He will see you through this. He will guide you to make the right decisions for your daughter.
Thanks again,
M
PS. So happy to hear about Janna's clear throat culture! YEA ;) Hopefully Lil' Chris' will be clear too:)

Hi M, I'm only going to be able to make a few 'scattered' comments tonight, but the discussion has been so good that I don't want to drop my end of it:-)
As for Cross-contamination; Timothy would've been nearly 5 and a half now, and I know that even when he was diagnosed at birth, they had already done away with the CF support groups and mixed activities. Here's the big deal (I think:-)... as CF progresses some CFers can develop bacteria that becomes resistant to the antibiotics that we have to treat them with. That's when the lungs really begin to be scarred and the lung function really begins to drop. These bacteria never settle in a non-cf lung because our secretions are able to effectively move anything out that doesn't belong. On the other hand the thick mucus' in the CF lung make it difficult to get rid of those infections. The problem with mingling with other CFers gets really tough when someone may have one of these antibiotic-resistant forms of bacteria and not even know it yet! Overall, they've decided it just the best rule to keep the 3-5 feet apart (or more).
All that said, I have 2 CF babies in the same home!! Janna's culture grew out psudomonas a week or two before Chloe was born! I was afraid that meant Chloe would get it from day 1. But apparently, different people respond somewhat differently even to the same bacteria, because Chloe (nearly 11 months) has not grown out psudomonas a single time!! Thank God. (And she's had cultures every 4-6 weeks) I do my best to keep Janna and Chloe from cross-contaminating each other. They don't use the same spoons, I don't dump their enzymes into the same bowl of baby food, they don't share bottles, or sippy cups, I try to keep Janna out of Chloe's face especially if either has any kind of cough or runny nose... BUT they are sisters. And we are a family that is very verbal and demonstrative in our affection and love. So when mom and dad are hugging and kissing :) ...the kids are too:) Especially if there are ouchy's involved:) We do encourage Janna to hug Chloe from the side or back and to kiss her forehead or hair instead of lips or nose.

One more thing:) About the Great Strides walk ... at the one here they actually gave out colorful beaded necklaces to anyone who was there with CF. That way it was something pretty to wear, let other people know that here was someone that they are actually walking to help, and yet it also let CFers know who to keep those 3-5 feet from:) I really liked being able to know those things:)

Thanks to Daniel's mom for responding to my questions. The doctors have been talking about a G-tube for Janna that would stay in for YEARS to come! Her weight is still a little low compared to Daniel's (him at 34, her at 28; he'll be 3 in July, she'll be 3 in Oct; but she was also 11 lbs 7 oz at 7 months old!). We are still saying that we are going to wait until she is 3 to 3.5 years old to even seriously consider the G-tube again. I believe she's doing so much better than the first 18-22 months of her life...We'll I've gone on and on again:) Please forgive me I'm sorry if it's a little difficult to follow.Good night and God Bless you, Lil' Chris, and all those that love him.
~ Susanna

CPT Comments from Daniel's Mom

I thought these were such great comments from Daniel's Mom that I decided to publish them as 1 post so nobody will miss them...

Daniel's mom here. Susanna - M was right, Daniel was on the feeding tube for 6 months. It made a huge difference in getting his weight up, and getting his minerals and vitamins back in balance. He was around 12 lbs when he was admited to the hospital and part of that was water retention. Dnaiel was 34 lbs at his check up earlier this month. I found the hardest time to get him to gain weight was 1 year to 2 years of age. At 2, he finally got interested in food, and hasn't looked back! It sounds like your daughter's weight is doing great. Congrats on your daughter's clean culture. Daniel had psudomonas last winter, and it is such a relief when the culture is clean! M- your fundraising is going great! It is so neat that you have a company this is so supportive. Let me know how the walk goes. Two kids are in bed, now to get the 9 year old going!Daniel's Mom

M- okay one more quick comment before I get S to bed. My husband and I also found this frustrating. We did the same kind of CPT with Daniel when he was that age. It is so hard to know for sure if you are doing it "right" I always used the rubber cups, but my husband used his hands. It looked like he was playing the drums. Another 6 months or so, and you should be able to get Chris the vest. I know Daniel was around 18 months, and you know how much I love it!Daniel's mom

Q & A

So much to talk about!! YEA!
Firstly, thank you Daniel's Mom for telling your story. As I said in my comment, I think you are a great mom and a great cf mom role model for me. Thank you for always being there for me. And I hope you know that I am always here for you, just a phone call away:) I always enjoy our lil' get togethers. I look forward to our next one. Hopefully we can get all the cf moms in this area together. That would be a lot of fun. I can't wait!

To answer Susanna's question about Daniels weight, I don't know, Daniel's mom will have to tell you that one. But I'm pretty sure she didn't mean to say that Daniel was on the feeding tube for 2 or more years. I can't exactly remember how long he was on it, I think it was for like 6 months. She'll clarify that I'm sure.

To answer Auntie Steph's question about cross-contamination ... CF people carry bacterias in their lungs. When they cough, it becomes air-borne. Although WE don't catch that bacteria, other CF people can. And no CF person wants anymore bacteria in their lungs than what they already have. That's why it is very very important to keep CF people at least 5 feet away from other CF people (at least, I think that's what they say).

This is the reason why we are not taking Lil' Chris to the Great Strides Walk on Sunday. It is not worth the risk of him catching anymore bacterias. Yes, some CF people do go to the Walks. You will most likely meet some at the walk you are going to, but it will be hard to tell who has it and who doesn't for some.

When Daniel's mom and I were talking the other day, we were telling each other about new CF moms in our town. Although it will be nice for us to get together and share stories, on the other hand, it is kinda scary, b/c you never know if our kids might bump into each other and not know it. I just thank God that the researchers or whoever, realized this. I think it's only been known for about the last 8 or so years! Susanna could probably tell us.

When Lil' Chris was younger, I read a book about a girl who grew up with CF. It was kinda like a diary of what she was going through, hospitalization, double lung transplant, things that happened to her after the transplant, etc. She was actually born the same year I was, and I remember her saying how she had sooooo many CF friends, b/c she used to room with them in the hospital. I felt so bad, b/c she and the doctors at that time didn't know that it was making them all worse. The book was called "Breathing for a Living" by Laura Rothenburg. I was actually just telling the new CF mom that I met at work the other day about this book. I came across this book at our local library when Lil' Chris was first diagnosed. My husband and I went there looking for something to read about CF. This was the only adult CF book we could find. I couldn't put it down. You should check it out if you ever have the chance.
Feel free to ask anymore questions,
M

Daniel's Story

Daniel's Mom just sent us a comment with his story & I thought instead of publishing the comment I'd turn it into a post so everyone will read it. Just so you know, I modified it a little bit to protect their privacy.

Thanks so much for sharing this story with us Daniel's Mom & I hope you'll keep us updated on the blog with his progress!

Hi M,

I would be happy to share Daniel's story, but writing is not my strong point so bear with me. Daniel, who will be 3 in July, is the youngest of four children. We also have J (13), S (9) and K (7). With all of my pregnancies, my husband and I opted not to have any prenatal testing done. Even though the doctors pushed it when I was pregnant with Daniel (I was the ripe old age of 39), we didn't feel the need. Daniel was born at 10lbs 9 oz. Absolutely beautiful. At two weeks of age, Daniel started throwing up all the time. I had nursed three other children, and I knew the difference between spitting up and vomiting. Thus began 6 months of weekly weight checks and two pediatric gastroenterologists (one tried to convince me that it wasn't Daniel throwing up that was causing the weight issues it was my faulty breast milk!). Besides throwing up, Daniel had diarrhea, wheezing, a diaper rash that wouldn't go away and generally not looking well. I cannot tell you how many tears I shed wondering if anyone was going to figure out what was wrong. On 1/16/06, when Daniel was almost 6 months old, I took him to the doctor's for his wheezing and weekly weight check. Daniel had lost an entire pound in one week and looked like he was retaining water in his legs. The doctor said he thought Daniel might have Cystic Fibrosis, and needed to be admitted to the Children's Hospital. We spent 15 days in the hospital where the diagnosis was confirmed. Due to the CF, Daniel is pancreatic insufficient which meant that all the nursing he had been dong for 6 months went right through him. At the time of diagnosis, Daniel was very malnourished and his vitamin and mineral levels were a mess. When we left, Daniel had 4 new medications to take everyday, a feeding tube, breathing treatments and we learned cpt. For us the diagnosis was a relief. We had worried so long and now we had a treatment plan in hand - we could be proactive. In case you are wondering, there is not a history of CF on either side of our families. Fast-forward, Daniel will be 3 in July and is doing great. Dealing with CF has pretty much become the norm in our house. Every day he does 3 breathing treatments, 1 hour on his vest, takes 2 vitamins, 1 Prevacid and 2 enzymes every time he eats. He is a champ about it! M and I were able to meet when our CF Clinic asked me if I would talk to a new Mom about CF. I jumped at the opportunity to help. I could not imagine being a new mom and having a baby with CF, and hoped I could offer some support. The connection has also been great for me. When M and I talked on the phone the other day, and I was talking about Daniel's cultures. I didn't need to explain my frustration that Daniel was growing new bacteria , M knows and understands. The only sad part is that because of cross-contamination, our boys will not be able to play together. I think I having taking up enough of lil Chris' blog, if you got this far, thanks for reading Daniel's story.

Daniel's Mom