Our 2015 CF Commercial that plays on MCTV

Thursday, April 30, 2009

Vest Question Update

I got an update about one of the questions I had asked at our last clinic visit...click here to read our last clinic apt. post.


I had asked the physical therapist a question about programming the Vest:

Q: We have to change the frequency from 12-14 after 10 min. on his Vest...is there a way to program it, so we don't have to change it?
A: The physical therapist said she was going to check on it and get back to me. ****UPDATE:****The physical therapist called my husband today and walked him through programming it. I thought there was a way and here all this time....anyways....if you have the Hill Rom Vest, all you have to do is hit:
  1. "Options"
  2. "New Program"
  3. set first speed settings
  4. press "On"
  5. set second speed settings
  6. press "On"
  7. then if you don't have a third level, then change the minutes to zero
  8. then press "On"
  9. then you have to press "On" twice and actually start the therapy to set the program(but then you can turn it off:)

Then when you go to use it, instead of pressing "Normal", press "Options", then press "Program" then "On" twice like usual to start it. It sounds hard, but actually is really simple. If you need help, I can walk you through it:) Let me know.

I hope this helps. Hey Kellee, I know you were asking about it, so if you need help just let me know;-)

M

Wednesday, April 29, 2009

Ayla is 3 Months/Lil' Chris' Throat Culture Result


Can you believe it? Ayla is 3 months old ALREADY!! Where does the time go!?! She is getting so big so fast!
She had a dr.'s appt. today...she weighs 12 lbs. and 12 oz. and is 24 inches long! Her weight and height are in the 75th percentile!!! I couldn't believe it!! Lil' Chris' height has been 75, but NEVER his weight! It was a good number to hear. I just pray Lil' Chris will get to the 70's too. It is SO different raising a non-CFer. No enzymes, no spoon and applesauce everywhere she goes, no percussions(pounding on her back, chest, and sides) 2 times a day, no acid reflux, no throwing up all the time, no worrying if she is getting enough food, no vitamins or Prevacid, no worrying about her catching every germ possible(well I do have to worry about her catching germs, but not in the same way as I do with Lil' Chris), no going to Children's Hospital every month, no worrying about hospitalizations, and no worrying if she is going to live past 37. I just never knew how different it would be raising a non-CFer, and how different it would feel. I love them both SOOOO much!!!

Here is a list of things she is doing now:
sleeping throughout the night-YEA!!
making longer noises-so cute:)
loves watching her big brother play
loves giving big huge smiles when she sees us
she is drinking 6-7 oz. 4-5 times a day
she will only sleep on her belly
she loves being put to sleep by patting her butt
she LOVES bathy time:) She never cries when getting a bath
the only time she starts to whine is when she is sleepy or hungry
she loves to kick her little legs-that includes kicking her blanky off ;)
she loves to watch tv
she hates her binky, but loves to suck on her hands
she loves watching her mobile above her crib(she gets a BIG smile on her face:)
she loves pink(ok, maybe that was mommy's doing;-)

Overall, she is doing great!! She was such a good girl at the dr.'s today! She only cried when she got her shots, and even then, it didn't last long. What a good girl! I asked the kids pediatrician if they would do Pin-Ups for Cystic Fibrosis for Lil' Chris and she said "Absolutely!" I was SO excited!! I gave her a pack and I also gave her a bunch of Great Strides flyers in a stand, so she could put them out for other patients to see and take. I also gave her a stack of business cards that my husband had made that say all the info about the walk. It also has my blog address on there, so hopefully I'll get some more readers and get the word out more about CF:)

On another note, we got Lil' Chris' throat culture test results back...he is growing 2 bacterias in his lungs unfortunately. This is the first time he has cultured 2 bacterias! He is growing...Haemophilus influenzae and Staphylococcus areus sensitive to Oxycillin(MSSA). They say he has grown these before, and that there is no changes at this time. I know it's not contagious, but I wish I really knew what these were and what they meant for Lil' Chris. It's not something they treat, but as a mom, I wish they would or could get rid of it. No mom wants their kid growing bacteria in their lungs.

M

PS. Donate today to help find a cure for Lil' Chris and all CFers by clicking on the Great Strides box in the upper right hand corner! Thanks.

Swine Flu and Cystic Fibrosis

First bike ride of the year!!! He had a BLAST!!
Ayla is just too cute with those raised eyebrows;-) She has a doctor's appt. today at 1:30. It's going to break my heart to see her get her shots;-( I'm going to ask the pediatrician if they will do Pin-ups or something for CF. Hopefully they will.

Thanks to a new CF mom I met on Facebook, I was directed to this site that talks about the Swine Flu and CF....http://www.cff.org/LivingWithCF/StayingHealthy/Germs/SwineFlu/

I think it's great that the CFF is keeping up on this. I heard about it on TV the last couple of days, and then when I went to work yesterday....that was all everyone was talking about! We had a truck of merchandise come in and we were told to make sure we wash our hands if we handle any of the plastic or boxes that come off that truck. Some of the merchandise comes from Mexico or something. So what did I do??? Tried to stay clear and I clipped my handy dandy hand sanitizer to my pocket! ;-) I think I may do this everyday! Everyone where I work knows how important it is for me not to get sick so I don't bring anything home to Lil' Chris. It is much appreciated!
Check out the article, and I will keep you updated if I hear anything new,
M

Tuesday, April 28, 2009

Fundraiser's

I just found out from CiCi's that we raised another $52.00 in the 10% of the receipt totals. It was kind of a slow night that night, but I thought we would have done more though, b/c we were telling every customer to put their receipts in the jar. Oh well. $52 is better than nothing. We did get the grant for $500 from Kohl's though. So that's great news!! Our total from that night now is $784.00!!! Not bad. We have another CiCi fundraiser on Thurs. May 28th from 5pm-8pm and I hear that Thursday nights are busier than Sunday nights at CiCi's. Let's pray we raise a lot more money to find a cure for Cystic Fibrosis!!!

When I had called CiCi's to find out how much we had raised, I also asked the manager about doing pin-ups there. He gave me the number to their marketing manager to see if we can do it in all 11 of their stores in this area! I left her a message, hopefully she will call back soon and hopefully she will say YES to all 11 stores!! Wouldn't that be GREAT!?! I can't wait to hear from her!

Here is the fundraiser my husband is doing at his work...

For a $5.00 donation, you get your name on a pin-up that he puts up on the wall to show your support, also you get entered into a drawing to win a Blackberry Pearl cell phone for AT&T. It was a great idea! He is doing really well! He has raised over $100.00 and it hasn't even been a week I think! Kevin, a guy that works for him, is doing a great job promoting it! He raised $30 with this sign my husband made for him to use at a yard sale Kevin's town was having...


Plus Kevin has gone to stores around their store to get them involved as well!! GREAT JOB, KEVIN!!! YOU GET THE "GREAT PROMOTING" AWARD!!

If anyone is interested in donating $5.00 to win a FREE BLACKBERRY PEARL cell phone...click here to donated and your name will go into the drawing.

Here are 2 raffle ticket flyers my hubby made for our CiCi's fundraiser...


I'm not sure which one we are going to use yet. He does a GREAT JOB on doing flyer's, doesn't he?? HONEY, YOU GET THE "GREAT FLYER'S" AWARD!!! I can't wait to see what you come up with next;-)

M

Friday, April 24, 2009

Great News!!

Today after work, I went back to Fashion Bug to see if they were still interested in doing Pin-ups for Cystic Fibrosis and they said YES!! I was floored!! This is the first place that said Yes and first place I got to do Pin-ups(other than my husbands store)!! I was so excited that I forgot to explain it all and I forgot to give a little poster about it. I'll have to go back later if they are not selling without it. What do you do for Pin-ups? I couldn't wait to post this good news!!!

Now I'll answer some questions that I got on my last post about our clinic visit...
  • Q: How do you give Lil' Chris his Prevacid? A: It is called a solutab. It dissolves in water. We put the tablet in a syringe and then suck up some water and then wait a few seconds for it to dissolve and then we shoot it in his mouth. (The "shoot"ing part sounds bad, but it's really not;) Lil' Chris loves the taste of it! The samples that we got from the clinic are in capsule form like the enzymes. We open them and sprinkle it over some applesauce.
  • Q: What does the hat say? A: "Help Cure Cystic Fibrosis" and on the bottom it says this blog site..."acure4lilchris.com".
  • Q: Where did you get that hat? A: My little secret;-) Actually I would tell you, but it is part of the prize you win on my other blog...thechallengediet.blogspot.com. Now don't you all wish that you joined????? lol
  • Q: Was it hard transitioning him from taking his enzymes as the little seeds to taking them in the capsule? A: Not really! I saw one day the Angela had tried it on Phenny and it worked, so I gave it a try and it worked for Lil' Chris too! I was shocked! We probably could have done it a long time ago. Thanks Angela! I still give it to him with applesauce though...force of habit I guess. Next step...swallowing them with water:0
  • Q: How is Lil' Chris so healthy? A: I think it mainly has to do with the newborn screening. Early diagnosis seems to be key in CFers. Thank the Lord our state started testing for CF in the newborn screening just 10 months before Lil' Chris was born. We are very fortunate.

Today there was a really good article about CF in the New York Times. Click here for the whole article. Below is just the end of the article. It talks about the new drugs they are working on. It's so neat to see all of our hard work fundraising for Great Strides in action. I really think a CURE is in the near future;-)


Bill Elder, 21, who has to spend nearly two hours a day clearing his lungs, is certain that early testing would have helped him. He went eight years without a diagnosis and, more important, without treatment, because he was born in Nebraska, which started testing infants in 2006. “It should be nationwide,” said Mr. Elder, a Stanford University undergraduate.

Researchers agree there is still a lot of work to do. “We need to focus not only on developing therapies that treat the downstream effects of disease but also on the therapies that are further upstream — those that can intervene early and either improve the complications that arise or prevent them entirely,” Dr. Acton said.

Twenty years ago, researchers thought they were on the cusp of such a discovery after scientists located the faulty gene that causes the disease. It was a huge breakthrough, raising hopes that investigators might be able to use gene therapy — a method that delivers healthy genes back into the body’s cells and tissues — to find a cure.

But that line of research simply didn’t pay off.

Today, physicians say the most exciting avenue of research involve new drugs that could address the root of the problem.

Over the last decade, for example, scientists have been testing an experimental compound called VX-770, which may be able to fix the defective protein that causes the surface of the lungs to become so dehydrated in cystic fibrosis. It works by essentially tricking the cells that line the airway into secreting salt, which causes water to flow back into the airway. By restoring the proper balance of salt and water, the lungs become hydrated, the mucus thins out and harmful bacteria are more easily washed away.

“I do think we will see a cure,” said Dr. Richard Boucher, director of the Cystic Fibrosis/Pulmonary Research and Treatment Center at the University of North Carolina at Chapel Hill. “These therapies that hydrate the cystic fibrosis airway surface may be able to stop the progression of the disease in adults. And, very excitingly, in babies you may even be able to prevent it.”

Dr. Boucher says the likelihood that this will happen in the next 5 to 10 years is “extremely high.” But many scientists also warn that even the most promising of drugs can fail in late-stage testing. There are now 30 or so drugs in the pipeline, including VX-809, another compound that helps correct the defective cystic fibrosis gene. If one fails, another might make it through eventually.

Research like this is also what keeps patients like Ms. Schaller, the runner, so hopeful. “When I was diagnosed I was told I wouldn’t graduate high school,” she said. “But here I am. We are living into adulthood and leading full lives.”

Keep up the GREAT WORK researchers!!!
M
PS. I'll post later what my hubby is doing to raise money;-) He had a great idea!

Wednesday, April 22, 2009

Clinic Appt. 4/22/09




Today's CF clinic appt. went GREAT!!! I couldn't believe it!! Another GREAT visit!! Thank you Lord!!


I know these great visits aren't going to last forever, but I'm just SO excited!! I was shocked when the triage girl said that he is over 27 lbs. and in the 55th percentile!! His height is 34.5 inches and in the 75th percentile!! His BMI is 65%!! The CF doctor said his lungs sound great, his height and weight is great, and his BMI is still above 50%, which is great! He said not to change anything. So we are still going to do 3 enzymes with every meal and snack, 2ml of Vitamax, and 15mg Prevacid solutab.
I had tons of questions for him...luckily I wrote them all down last night and kept thinking of new things to add to the list all night and this morning;)

  1. Q: Does it matter that we started giving him his enzymes whole with the applesauce instead of sprinkling the little seeds on top? A: No as long as he doesn't choke on them. I don't care how he gets them as long as he gets them.

  2. Q: Does he still need to be on the Prevacid? A: Yes b/c it helps the enzymes work better. I asked if he would be on it for the rest of his life and he said yes probably. So that kinda stinks...but I can't complain b/c who knows where he would be today if he hadn't been taking Prevacid all this time. If something's not broke, don't fix it...that's my theory;)

  3. Q: Is baby food still ok? A: Yes, anything to get him as many calories as possible.

  4. Q: Should we be adding extra butter and cream to all his foods to add calories? A: Yes you should be adding this to his foods, but it doesn't have to be every time. (I have to admit that we haven't done a good job at adding extra calories to his food. That's why I was worried about his weight. I added some cream for the first time to his milk yesterday, b/c CiCi a new CF mom I met thru this blog told me that she always adds it to her little girls milk unless they are out. Lil' Chris didn't mind it, so I think I will continue it. I just usually try to give him high calorie foods instead.)

  5. Q: We have to change the frequency from 12-14 after 10 min. on his Vest...is there a way to program it, so we don't have to change it? A: The physical therapist said she was going to check on it and get back to me.

  6. Q: Are saline humidifiers ok? A: NO, I would stay away from humidifiers. Unless you clean it EVERYDAY, mold grows on it. Mold of course is not good for CF lungs.

  7. Q: Our Pediatrician wants to know if you can do a lead test at his annual appt. in July so he doesn't have to get blood work done twice? A:Yes I will add that.

  8. Q: Can I get some samples of Prevacid, Vitamax, and some syringes? A: Yes. They gave me a bottle of Vitamax and 12 Prevacid capsules, and 2 syringes for the Prevacid. He also wrote out a prescription for both since I have been having so much trouble the last 3 or so months in getting refills.

  9. Q: I heard that most CF clinics use dance revolution and Wii with their patients. My store is selling an American Idol dance pad that just went on clearance for only $3.99 and there is one that 2 people can do at the same time for only $5.99. Would the clinic be interested in purchasing them for the clinics? A: The physical therapist said that she is going to find out, b/c they have a certain budget to spend and these would be great to use and they are really cheap. She is going to get back to me.

  10. Q: Is there anyway for you to get in touch with the CF patients around my town to see if they would be interested in walking at our new Great Strides walk in town? A: The social worker is going to get back to me. She asked me if I had a flyer, so maybe that meant they could put a flyer up at the clinic or something(of course I didn't have any with me at the time:(

The doctor did a throat culture, so I will let you know if he grew any bacteria as soon as I find out the results. Hopefully he didn't grow any this time.

Our next appt. is our annual visit on July 8th at 8:30am. The doctor said that he is going to have to get a shot(I forget what it is for though, but it lasts for 5 years). He didn't say what else he would get, but I'm guessing x-rays, blood work, shot, dietitian, social worker, physical therapist, and regular CF doctor visit. This will only be our second annual visit, but from what I hear this is what they usually always consist of.

I know a couple of other CFers had their clinic appts. today too, I hope all went well. I look forward to reading all about them.

M

PS. Did you see what the hat says in the pic above?

Tuesday, April 21, 2009

Clinic Appt. Tomorrow


Tomorrow Lil' Chris has a CF Clinic appt. It will be Ayla's first time going there(outside of the womb that is;) I'm just so glad that the visit isn't for the both of them. Ayla not having CF is such a blessing.

Please pray that he has a good visit and gets a good report. I pray his weight is up, but I'm not so sure...I never am.
Thanks,
M

Sunday, April 19, 2009

CiCi's Fundraiser Went GREAT!!

Thanks Erica for making this awesome sign to put by the raffle tickets!


We had a GREAT night at our CiCi's fundraiser for a CURE for Cystic Fibrosis! It was me, Erica(our Great Strides coordinator) Daniel's Dad, and 4 other Kohl's associates...


Thank You:

Roberta

Barb N.

Missy

Rita

Thanks to these 4 wonderful ladies for helping out, we were able to get a grant for $500 for a CURE from Kohl's!!! Isn't Kohl's GREAT!! It's really nice that Kohl's helps out the community like this. Thanks again girls! You all did such a GREAT job bussing tables, selling raffle tickets, and talking about Cystic Fibrosis. Thanks also for taking plates out of my hands so I could talk to the customers;-) It was so nice having you guys there, b/c with you guys bussing tables, I was able to concentrate on talking more about CF to every customer. I hope you all join us next time too;)


I forgot to take pictures tonight, sorry:( I'll try to remember next time. We are doing another CiCi's Pizza fundraiser again on Thursday May 28th from 5pm-8pm. We again will be raffling off 3 Indians club seat tickets. Tonights winner was Mark, a customer who donated $10 to buy 6 tickets. Congrats Mark!!! He seemed very excited when I called him with the news that he won. He said he doesn't live around here and was just in town for a soccer game for his son. I bet he is glad he decided to stop at CiCi's!! lol


For bussing tables for tips, raffle money, and just generous donations....we raised $232.14 + the Kohl's $500 grant = $732.14!!! YEA!!! I will find out tomorrow how much we made on the 10% of the customers receipts.


There were so many kind hearted, generous people there tonight. I really enjoyed talking to each and every one of them. Some of them, you could really tell that their heart went out to us. One customer almost got teary eyed when I was telling him about Lil' Chris having to do his Vest treatment 2 times a day for 20 minutes each, and 4-5 times a day when he is sick for the rest of his life unless a cure is found. He just gave a big sigh and put his head down as he looked at his healthy kid sitting next to him. I was very touched he felt this way. On his way out, he donated $10 for 6 raffle tickets and told me to put my son's name on all of them. I couldn't believe it! What a nice guy! Nobody has ever done that before! I was very thankful!


Another great customer was a young guy who was eating all by himself. On his way out he put his tip in the donation jar and then went out to his car and came back with a hand full of change and put that in the donation jar too. I was shocked! Can I just say I love this town:-)


Thank you to Alma and Paul for getting the Indians tickets to raffle off. Also thank you for dropping off the posters and everything. I hope you guys feel better soon and thank you for thinking of us by not wanting to spread the germs;)


I can't wait for the next one, it was a lot of fun tonight,

M

CiCi Fundraiser and New Tractor




Here are a couple of pics of Lil' Chris riding his new tractor. He LOVES it! It was a coincidence that he had this shirt on today when we bought the tractor! Honest! Thanks Greg for the T-shirt! I know I said I would never put it on him, but it is so cute I couldn't resist. JUST SO EVERYONE KNOWS, WHAT THE SHIRT SAYS IS NOT TRUE!! Lil' Chris would never trade his sister for a tractor!

Sorry I haven't posted the Easter pics yet. For some reason the video's would not upload. I will have to try again. I've been busy this week though, b/c we have another CiCi's Pizza fundraiser for CF tonight from 5pm-8pm. If you are in town, come on over and visit us! It's a lot of fun! We are going to be raffling off 3 club seat Indians tickets again! Plus 10% of your receipt will go towards a cure! I have 5 Kohl's associates coming, so that means Kohl's will grant $500 for a cure! Gotta love Kohl's!!
Pray that we have a good night and raise lots of money to find a CURE for Cystic Fibrosis!
M
PS. We have been trying to fatten up Lil' Chris b/c we have our CF Clinic appt. this Wednesday. Please pray we get a good report!

Tuesday, April 14, 2009

Rough Night/Lung Transplant Video

Lil' Chris had a rough night last night(or should I say rough early morning;)

At about 2:30am, I was feeding Ayla on the couch downstairs, and all of a sudden I hear Lil' Chris whimpering upstairs! My first thought was maybe he was stuck somehow or something(whenever he is stuck, he whimpers instead of screams for help). So I propped Ayla up on the pillows on the couch and ran upstairs to find Lil' Chris sitting up in his bed with throw up all in front of him. I quickly ran and woke up my husband to help me. Like usual, I took care of Lil' Chris while my husband changed the sheets in his crib. Usually when he does this, he keeps throwing up every 5-10 minutes for about 3 hours. This time it was different. He did not throw up again, so we put him back down to bed and he went to sleep.

Then as I just got Ayla back to sleep at 4:30am...I hear him hurling again:( My husband got to him before I did this time. So I put Ayla down to sleep and went and helped clean him up while my husband changed sheets AGAIN! Isn't my hubby the BEST!! =) This time, before I could even finish dressing him, he started talking and laughing! We were both shocked, b/c usually he never talks when this happens! So we knew he was starting to feel better:) He and I even played with some toys while waiting for his bed to be ready! Then he went down to sleep and slept til 10:30am!

After this second time, my husband and I were brainstorming as to what caused this. We went over every thing he ate that day. The only thing different he had was some Cracker Jacks(you know...the old caramel popcorn boxes that come with a little prize). So I looked at the ingredients on the box and it said soybean oil and soy lecithin. At the bottom it says "Contains peanut and soy ingredients". We know he is allergic to soy protein from previous "rough nights", but I guess he is allergic to all soy! We'll have to be more careful next time and look for anything that has any kind of soy in it. Sorry Lil' Chris:-(

On a better note, he woke up this morning with a big smile on his face! He has been fine all morning! Thank God! We are very thankful it wasn't as bad as it usually is. I guess he is allergic to soy protein more than any other kind of soy.

I was reading Nate's blog today and saw a post about a local girl near him who had a double lung transplant 6 months ago. You can watch the video by clicking here. She is so young. I hate this disease! Please click here to donate today to help find a CURE so no more CFers have to feel like they are taking their last breath.
Thank You,
M
PS. I am uploading our Easter pics as I type this, so hopefully I can post them soon;)

Saturday, April 11, 2009

Thank You!!

I recently had a few donations to our Great Strides Walk and I just wanted to say a HUGE

"THANK YOU"
Denise L. (Christi's MIL)
Gram D. (The BEST Grandma EVER;)
Al (my sister D's brother-in-law)
Thank you all so much for your very generous donations in Lil' Chris' name. It will not only help Lil' Chris' future, but all CFers futures. We all can't thank you enough. I can only hope and pray that many follow in your footsteps and open up their hearts like you did:)
Fundraiser Update: We are having another CiCi's Pizza fundraiser next Sunday, 4/19 from 5pm-8pm. If you are in town, please come and join us to win some cool prizes including club seats to an Indians game! Plus, 10% of your bill will go towards a CURE!! I pray we have another great turnout like last time.
I gotta give a BIG SHOUT OUT to my mother-in-law for going above and beyond for her grandbaby! She is having a Great Strides Walk on May 2nd at the Ocean City Boardwalk(if you would like to join her team, please email me). She also has "Pin Ups" going up all over and is doing fundraisers left and right!! Way to Go!! We can't thank you enough for all your efforts and for all that you are doing for a better, longer and healthier future for Lil' Chris and all CFers!! I am granting you the "GREAT JOB" award!!
Thanks again everybody:)
M

Thursday, April 9, 2009

200 Hours on the Vest!

I can't believe my poor lil' guy has had his Vest shaking him for 200 hours already and he is not even 2!! That seems like sooooo much! I wish I knew what it felt like. I'm still to this day amazed that he does it with no problem. He does it like it's nothing! I'm so proud of him, he is such a strong lil' boy;)


He used to like watching the Wiggles every time he did his Vest, but now he likes to watch "Yo Gabba Gabba" when he does it. While we put his Vest on him, he says "Gabba? Gabba?" His new favorite episode is the one with Jack Black. It's hilarious, even Chris and I enjoy that one;-)

For some reason, the Vest seems to calm Ayla! She could be crying, then we put Lil' Chris on the Vest, and all of a sudden she stops crying! Then when the Vest is done, she goes back to crying again! It so funny;-) She could even be upstairs and this works! lol

I hope you enjoyed the montage,
M

Tuesday, April 7, 2009

Questions About Blog Awards

I've been asked these questions about continuing the blog award pass along:

1) How do I get the logo on my blog?

It's real simple, I had to ask someone my first time too:) All you have to do is right click on the picture, then click copy. Next, minimize your page and go to your desktop. Right click on your desktop and then click paste. Then when you are writing your new post, click on the add image button next to your spell checker. Then click browse and find the pic on your desktop, then double click the new pic, then click upload image!

2)How do you link the other blogs just by their names. I always have to put www. ?

When I get done writing the name of the blog I want to link in my new post, I save what I have written, then I go to that blog that I want to link, and click on their address bar and press Control C to copy it, then I go back to my new post and change it to Compose instead of Edit Html(upper right hand corner of new post) and then I highlight the word that I want to link it to and then I click on the lil' green button thingy(chain link) by the color changer and then just hit Control V to paste the link in there and hit enter. Then what I usually do is change the color. I usually have all my links in orange;-)

Sounds difficult, but it's actually really easy!
If you have any other questions, just let me know. If any one else does it easier, please let me know;)
M

Blog Award!!!


I got another blog award from Carrie's blog, Capturing Glimpses, thanks Carrie!! I love bloggy awards;)
Here are the rules for this award:
1) Put the logo on your blog or post
2) Nominate at least 10 blogs that show great attitude or gratitude
3) Link to your nominees within your post
4) Let the nominees know that they have received this award by commenting on their blog
5) Share the love and link to the person from who you received your award
Here are some great blogs I love to read:
2. Graciy @ CF Wife
6. Tooter's Mommy @ The Tale of Olivia's 65 Roses
7. Cindy @ Cure CF 4 Reilly
8. Julie @ Mugga Bugga
9. Kelli @ Sydney Ann
Don't forget to pass it along:)
M

Sunday, April 5, 2009

New Blogger Buddy=)

New blogger buddy: http://paces4parker.blogspot.com/ check it out! Parker is 2 years old and has CF. Please help welcome his mommy to our lil' CF blogger community:)

Thanks,
M

Q & A

I had asked a few days ago if anyone had any questions for me, so here are my answers. . .


Phenny's mom, Angela: Q: I would like to know more about the 65 rose garden?
A: I'm not sure if this is just something that my state does or not, b/c I had never heard of these before I moved here. They are stakes that you put in the ground. They have all different kinds. For example, I've seen 50 crows(you know, the big black birds) on a lawn before to say Happy 50th Birthday to whoever lives there. I guess it's kinda like a prank, a way to embarrass that person publicly. But ours is not like that. These are going to be in the shapes of roses. We have a corporate sponsor form with all different amounts for them to donate. And as long as they donate at least $125, their company name will be on one of the roses. The goal is to get 65 sponsors, b/c 65 roses is such a famous story for CF and 65 will make a nice lil' garden. If you don't know the story...one time a little boy with CF overheard his mother talking on the phone. The little boy thought she was saying 65 roses, but she was actually saying Cystic Fibrosis. It's a cute lil' story, and ever since then, roses have kinda meant a little bit more to all CF families. I'll try to find a pic from last year.


Zoe's mom: Q: How did you get CiCi's on board? Graciy: Q: How did you get the okay from CiCi's to do the fundraiser there? (I'll put these 2 questions together since they are the same;)
A: Last year when I was going around business to business asking for sponsors, CiCi's was one of them. I asked to talk to the manager and right off the bat he said that they do what they call a "Dough Raisers" which is when you pick a night(except Fri. or Sat.)from the hours between 4pm-9pm and 10% of the receipts that get put in a box by the register will goes towards your cause. You can also have a raffle, buss for tips, and spread the word about Cystic Fibrosis. It was too late by the time I had asked them last year, so I kept them in mind for this year. All we had to do was fill out a paper and return it to them. This paper needed the tax ID number or something like that, I'm not sure, our Great Strides(GS) coordinator, Erica, did that part. I guess you could say that is how we got them on board, b/c without that number, we wouldn't have been able to do it. You can call the number below to get your number I think.


Zoe's mom: What exactly did you do for the CiCi's fundraiser?
A: What we did for the fundraiser was make copies of the flyer that CiCi made up for us and passed them around town and let all our friends and family now about it. Alma(another local CF mom) made posters for us to hang on the doors for people to see as they entered. Daniel's parents made fact cards for the tables which really helped I think.

At the night of the fundraiser, we all bussed tables for tips and tried to sell the raffle tickets. For example, what I did, was I would go up to a table who had some plates that needed removed, and I would ask them if anyone had talked to them about our Cystic Fibrosis fundraiser yet. Most of them said No, so I would then go on to tell them what CF is and how it affects our kids and I would always talk about the life expectancy. This is when you can see their expression change. I would tell them about how 50 years ago they weren't expected to make it to elementary school, and now b/c of the Cystic Fibrosis Foundation(CFF) and Great Strides and CF moms like myself doing fundraisers like this, the life expectancy is 37. But that's not good enough for me, I'm looking for a cure. Then I would tell them about us bussing tables for tips(which was very hard for me to say, b/c it is basically asking them to give you a tip), and I would also tell them about the raffle. I wasn't saying anything about the receipts for the first couple of hours, but by that last half hour, I started noticing that a lot of people weren't putting their receipts in the box. So that was when I changed my tactic. I starting going up to tables and saying," Hey, did you get your receipt in the box by the register? No? Well, did you know that just by putting your receipt in there, 10% of your total with go towards a cure for Cystic Fibrosis which is what all of our kids have." Then I would point to all of us CF parents there, and then I would go on about CF and their daily treatments, and so forth. Then when I was done, I took there empty plates and told them to let us know if they needed anything. I also gave stickers to the little kids, which I think helped break the ice too;) It was really a lot of fun!! We made only $76 in the receipts, but made $315 in tips and raffle money!! Overall not a bad night! Next time I am definitely going to talk about the receipts from the start.


Jessie, Breezy's mom: Q: Did you have to get permission to use the CFF and GS logo for your fundraiser?
A: We actually didn't really use the logo, other than the papers I had sitting out for people to take. These papers included info about the walk, info on being a corporate sponsor, and info about starting a team to walk and raise money. The logo was on each paper, but I don't think it was a problem to use it, b/c our GS coordinator was the one who gave them to us.


Q: How can I start a walk in my town?
A: You can get info from a GS coordinator near you by going to ...
6931 Arlington Road
Bethesda, Maryland 20814
Phone: (301) 951-4422
Toll-free: (800) FIGHT CF (344-4823)
Fax: (301) 951-6378
* E-mail: info@cff.org
I called the 800 number last year and they asked me what state and what chapter I was in, and they gave the phone number to my chapter. That is how I first met Erica. I originally called her to get info on starting a walk here in my town. I only knew to do this b/c of Nate. He posted about it once on his blog about starting a new walk, so it inspired me to call and try to get one in our town too. So, thanks to Nate for the encouragement, we are now going to have a walk in my town for the first time this year!!! YEA!!!! You can do it too, just call the number and ask!!

Q: How do I get my GS page linked to my blog/facebook?
A: Go to your GS page and on the left hand side click on "Get the GS Widget". Then you just follow the directions to link it. If you need help with it, just let me know and I can walk you through it.

Q: How can I get a Kohl's store near me involved?
A: Go to the nearest Kohl's store to where your walk is going to be(or call them), and ask to speak to the manager who sets up their A-Team events. If they are not there, either come back or ask to speak with any manager. Tell them that you have a great A-Team event for them, then go on and tell them about your walk. If they say "No, we don't do events like these", tell them "Yes you do, Kohl's is on the video that is on the GS website. If you watch the video, you will see people in black shirts with a big A in the upper left hand corner." If they still say No, just tell me and I will call them and get them involved, we have to act fast b/c they need time to get the approval from corporate and need time to get associates to sign up.

Q: What does Kohl's do for GS?
A: Kohl's will try to get a team of 5 or more associates to come to your walk and help out or just walk. As long as 5 associates go for at least 3 hours, Kohl's will donate $500 to your cause. It may not go directly towards your GS page/goal, but it will still go towards a cure. Kohl's is a great store which helps out the community all the time by doing fundraisers like GS. I'm very proud to work for them.

I hope I answered everyone's questions. If I missed one, or if another question arises, just let me know.

Thanks for all the great questions everyone! It was a lot of fun answering them:)
M
PS. I will try to post pics from last years walk soon:)

Saturday, April 4, 2009

Check It Out, My New Blog!!

I've got the new blog all done and ready to go!! Click here to see it and join up today to not only lose some weight, but win some cool prizes!! Come on, I need your help to lose this baby fat!! Will you help me? I'll motivate you if you motivate me;-)

To join, just tell me in the comment area and let me know if you want to be an author so you can post too:)

Here are the rules(the first post on the new blog;)...
The Rules
Here we go team! Let's do it! I know we can!!


So here is my new exercise blog! Do you like it? Thank you so much for joining me on my mission to lose weight in 3 months! It's going to be so much fun!

Here are the rules:
1. If you are going to join, you must commit yourself 100% (it's only 3 months, you can do this one thing for yourself, can't you?)
2. If you want...I will add you as an author on this blog, which means you will be able to post how you challenged yourself that day and how you challenge everyone else. You won't have access to anything else, just posting. You don't have to be an author, you can just leave comments if you want and if you want them shared with everyone I can post your comment. Or... you don't have to write anything. You can just read and join our team. I'll call you guys our silent partners;-)
3. You CANNOT post about anything else other than dieting and exercising! This is our way of getting away from the rest of the world and doing something for ourselves! You can post health facts or recipes or anything else to do with your diet and exercise routine, but nothing else!
4. The rule is you must run 5 minutes EVERYDAY! Whether it be on a treadmill or outside. If you for some reason cannot run, then you must walk at a fast pace. If you don't have access to a treadmill or can't get outside, then you can run in place or do something for 5 minutes straight.
5. Your post/comment does not have to be long, short and sweet will suffice! We all have very busy lives and are already taking time out of our day to exercise, so don't spend a lot of time posting about your challenges. Just say what you did today and what you challenge everyone else to do and that can be it! That simple:)
6. Take a "before" picture of yourself, so that you can compare in 3 months. You don't have to share it, but you can if you want to;-)
7. Weigh yourself today! Don't worry, I'm not going to ask you what you weigh! lol!! I do want you to write it down and keep track of how much you lose either daily or weekly. You can post how many pounds you have lost if you want.
8. No more soda & chips! You have to try to start eating healthier. No starving yourself & of course, no throwing up food;)
9. I've decided to make a point system just for fun;-) You get 100 points for EVERY 5 minutes that you run! Walking only gets you 50 points for every 5 minutes. If you do sit ups or crunches or leg lifts or anything else, you get as many points as you did...say you did 30 crunches, then you get 30 points. Sometimes I'll throw out a "Bonus Challenge" and if you do it, then you can get lots of Bonus points!! =) The person with the most points by July 4th(exactly 3 months from today) will win a special prize just from me! I will send it to your house. You're gonna love it!!!
10. You MUST be completely honest! If you cheat(ie. eat ice cream), you must tell me, and points will be deducted. So don't cheat!! I'm using the honest system.
11. You don't get points if you don't tell me what you did that day. You can tell me what you did the last 3 days or something like that. I know we don't all have time to get on the computer everyday;-)

Are you up for my Challenge????

Spread the word to friends and family members to make it more fun for yourself=) Link it to your blog, facebook, my space, or twitter if you like. The more the merrier!!

Oh yeah....HAVE FUN!!!
M
PS. It starts now;-) Go run!!! You can do it!!! Let me know if you want to be an author.

If you join before April 11th, you will get 500 bonus points!!!

I just got done running my 5 minutes and I did 20 crunch/leg lifts and 30 crunches and of course I joined my own challenge diet;)....therefore I have 650 points!!! YEA!!

How many points are you going to get today???

I can't wait to see all the results:)
M

Friday, April 3, 2009

Day 3 & New Blog Idea

Ok, so I just got done running my 5 minutes. I know 8pm at night, well what can I say...that's what happens when you have a full time job and have 2 kids! But I've challenged myself to not let anything get in my way!!

Today I challenged myself to up the speed from 4 to 4.5! Ya know, it really wasn't all that bad! So now I know I can do it. From now on that is where I will start!

Now, I challenge you to up your speed .5!!! You can do it!!!

I was playing with Lil' Chris on the floor and he somehow ended up laying across my stomach, so I thought...Hmmm this is a good opportunity to get some exercise and incorporate the kids! So as he was laying there, I started doing crunches! It's a little bit harder with extra weight on your belly, but I was up for Lil' Chris' challenge;) I did 30 crunches!! He had a blast and was giggling the whole time! Ayla just sat in her bouncy seat and watched us the whole time. It was so much fun!I challenge you to do the same! If you don't have any kids around, then put something heavy on your stomach or get someone else involved by having them step on your stomach(ok, not step, but put a little pressure on your stomach) You'll feel that you move the person or object up and down as you crunch. It's an awesome feeling of accomplishment;-)

Thanks everyone who is joining me on this mission to lose weight in 3 months! I love all the responses I got. Thanks for all the great diet ideas too!! I'll be sharing those with everyone on my new blog....Yup that's right....I'm starting a new blog called "The Challenge Diet" .Where everyone who wants to join me can be an "author" if they want and post how they challenged themselves and what they challenge everyone else to do!! I think it is going to be a lot of fun! Let me know if you think this is a good idea or not, and tell me if you are interested in being an author.

So far here is the list of who wants to join "The Challenge Diet"...

1. My sister, D
2. My mother-in-law
3. My father-in-law
4. Christi, my best friend
5. DeAnn from The Smithson Family
6. Graciy from CF Wife
7. Chris, The Best Husband In the World

Thanks guys for all your support.

Thursday, April 2, 2009

Join Me!!!

So I've started my diet. It actually started on April 1st. I have to lose all this baby weight and get back into shape(or whatever I was before having 2 kids pretty much back to back;) in 3 months. My 10 year high school reunion is on June 27th. I don't really want to be the "Wow, she gained a lot of weight since high school" girl.

So my goal is to run on my treadmill for 5 minutes EVERY day. I know, I know, 5 minutes isn't going to do anything! Here is the kicker though...if I miss a day, I have to run 10 minutes non-stop, if I miss 2 days, then I have to run 15 minutes non-stop. This is what makes me work out every day, b/c 10 and 15 is too long for me not to stop in between, so I end up killing myself doing it. Which this again makes me run EVERY DAY! I did this once before and ended up losing 10 pounds in a month! CONSISTENCY IS THE KEY! At least that's what my dad always taught me.

So far, after day one of running, I lost 1 pound!! YEA!!! So today(day 2) I upped it a little bit and did 50 crunches, and 30 leg lifts. I've also been trying to eat more healthy foods and take less proportions...in other words, I stopped stuffing my face until I was full. I still feel hungry after eating light, but that wore off pretty quick and then I didn't even notice it anymore! I though, I can do this!!

I was wondering if anyone would like to join me in my pursuit of slimming down??? We all know that exercise isn't only good for CFers, it's good for ALL of us!! Let's get healthy so we can stick around longer for our CFers! They need us! Let's show them that we can do it too, and they are not alone!! Plus, we need to get into shape for our Great Strides Walk don't we;-)

So I'm challenging you, join me!! I'll challenge you and you can challenge me! I need the help too!

Can't wait to see all of our results;)
M
PS. Let me know of any questions you might have. I will answer them this weekend.

Wednesday, April 1, 2009

Any Questions?


I've been getting a lot of questions lately(mainly about fundraising), so I've decided to do a Q & A post instead of answering through email. This way everyone can benefit! So ask away!! I'll answer pretty much anything:) I'll try to answer them all this weekend. Hope you like the pic above! It's my new fav;-)
I sent out some of my Great Strides emails today and already got a donation!!! I was so excited to see such a quick response!!
Thanks Uncle Joe and Aunt Diana!!!
You guys are the BEST!!