5/6/15 GREAT Annual Clinic Visit

Chris had an AMAZING annual clinic visit today!! Here are his results that I keep in my phone in an app called Easy Lists(highly recommend it, I use it for everything;)...5/6/15 almost 8 yrs old-53.25", 64 lbs, 78th% weight, 92% height, 52% BMI, PFT 96/93. Last visit was on 12/17/14 52", 57.5 lbs, BMI 14.96 30th percentile, PFT 111/110.

So he gained over an inch, and a whopping 6.5 POUNDS!!!! WHAAAAAT?????? That's the most pounds gained EVER!!! I guess his new enzymes are really working!! We couldn't be more happy!!! They even said he doesn't really need to do the Scandishakes(600 calorie supplement drink) anymore!!

His PFT's went down some, but he wasn't trying very hard because his belly was hurting all morning. Poor thing, it was hurting throughout the whole visit off and on. He's ok now though.

He didn't need to get chest X-rays this year, but he did need to get blood work done. He was such a big boy!! He didn't cry at all!! Test results and culture results will come soon.

We tried asking about getting the Afflovest, but they didn't recommend it. Until there is proof that it works just as good as his Hillrom vest, they won't prescribe it. Bummer. I've heard great things about the Afflovest and it would be very nice to have for travels, because it runs off of battery packs. So he could do it in the car or even walk around with it on! Oh well. If it's not going to be good for him, then we don't want to chance it.

I also asked about getting the eRapid Nebulizer for his daily Pulmozyme that he inhales. They are going to try and get it for us. It will cut his treatment time from 10-15 min down to 2-3 min!!! Woohoo!!! :)

All in all, a GREAT annual clinic visit!!!

Our CF walk this past Sunday went GREAT as well!! The weather was beautiful and we raised about $27,000!!  I will post pictures soon!! :)
M

2015 CF Great Strides Commercial

Here is our 2015 Great Strides Commercial for our Wooster Cystic Fibrosis Walk on Sunday May 3rd. Check-in is at 11am and the walk begins at noon. It's located at the pavilion next to Ida Sue School on 266 Oldman Rd in Wooster.

I hope you can join us! If not, please consider donating to this amazing cause! Click this link to donate or to register to walk, it only takes a second... http://fightcf.cff.org/goto/acure4lilchris

BIG THANK YOU TO MCTV FOR HELPING DO OUR COMMERCIAL THIS YEAR!! Mark, you put it together beautifully!! Our best commercial yet!!! :)

2015 Walk Update

I can't believe it's that time of year again!! I've been busy planning our 6th Annual Great Strides Walk for a CURE for Cystic Fibrosis in Wooster!! It will be on Sunday, May 3rd at the pavilion by Ida Sue School. Registration begins at 11am and the walk begins at noon. Hope you can join us!!

So far, I have most of the food and entertainment nailed down...
-Panera Bread Bagels
-Domino's Pizza
-Buehler's fruit
-Ice from Speedway
-Pat Catan's craft table
-Dr. Dave the Science Guy doing balloon animals
-The Cat's Meow character will be there again from 1-2p
-Wooster Fire Truck will be there from 11-12:30
-Samaritan Care Ambulance will be there from 11-2:30

I'm working on getting prizes for the walkers, so if anyone wants to help, that would be AMAZING!!! BIG THANK YOU to Debbie C. for offering to help gather some prizes this year!!! THANK YOU DEBBIE!!!!! YOU'RE THE BEST!!!!

Also, I'm working on trying to get sponsors, either individual single rose sponsors of $125, or corporate sponsors(ranges from $125-$10,000). If you know of a business that does this, please let me know and I will contact them. Their business will be represented at the walk on a big sign!

If anyone has any other great ideas for us to add to our walk this year, please let me know! I'm always trying to think of new creative things to make it more fun for everyone!! :)

Don't forget to register to walk so I know how much food to get!! It's quick and easy to register and saves time the day of the walk! Here is the link to register for our 2015 walk, just click on the team that you want to register under(my team is A Cure 4 Lil' Chris) or click Join A Team... http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?fr_id=3488&pg=entry

Our walk so far has raised $5,630 and the goal is $35,000, so please register and start fundraising today!!! Ask 10 friends and family for a $10 donation, and you will get a FREE Great Strides T-shirt at the walk for raising $100!! :)

We are so close to a CURE and the only way we will get there is by raising the MUCH NEEDED money to help in the research!! Please, join us or donate!!! Get creative in your fundraising! My kids classes are going to do "Change for CF" where they bring in loose change for a month! :)

We are working on getting the commercial for the walk done. BIG THANKS TO MCTV FOR ALWAYS BEING SO KIND TO PLAY IT THE MONTH BEFORE OUR WALK IN ANY OPEN SPOT THEY HAVE!!! THEY ARE THE BEST!!!! :) I'll post it when it's all done.

Thanks, I'll keep you updated!!

M

New Enzymes 1/29/15

Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)

One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??

A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.

At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.

So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)

As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!

Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)

I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!

Have a GREAT day!!
M