Woo hoo!! This Dr. works for the same organization I contract for.
Looks like we may have some promising cf treatments on the horizon. Lets pray together for FDA approval for trials and that they work! :)
http://www.sciencedaily.com/releases/2009/12/091206162959.htm
Great news for our family and friends with CF.
It looks like so many treatments and therapies are just waiting for FDA approval for trials on humans.
Of course it's a long process even after that but so many things look promising.
I am thankful Kai's lung issues have yet to come to fruition.
Right now it's the gastrointestinal issues that are hindering our little man from growing up as big and strong as he should.
He is a pretty healthy little bugger besides!
http://www.sciencedaily.com/releases/2009/12/091206162959.htm
I have been so terrible at posting. So much has been going on this year it's not even funny!
Kai just turned 4. Troi just turned 11.
Both boys are keeping me busy.
We will be walking again this year at Cannon Park in Carlsbad.
If you can't walk with us, please donate...if you can't donate or are out of town...there are walks across the country...probably one in your area!
Your support means the world to me.
Those of you who have shared the ordeal of getting Kai to eat know that this photo is one to save!
Kai continues to go to occupational therapy to learn how to eat. So, this picture is him in RARE form. Not so rare now...the kid actually eats CHIPS! Potatoe- BBQ, pwease!
Everything to him lately is a fry. When asking for chips, he asks for fries.
I am thankful for this particular moment of him eating...and pray for the day the kid picks up a cheeseburger and chows down!
Wow! Scribbles In The Sand had a delightful scrapbooking FUNraiser for Cystic Fibrosis on June 30. There weren't many scrappers that showed up, but there were many visitors throughout the day and the donation box was filling up rapidly.
Thank you Scribbles In The Sand!
What a wonderful walk we had today. Our four mile walk this morning is Carlsbad was exhilirating! Despite the Gray May climate, our team of 20 tredged on and completed the walk without injury!
Thank you to all the loving family and friends that walked with us today. I cannot begin to express my sincere gratitude at your love and support. Your continued love and support means everything to me and most especially to Kai. He's only 2 and doesn't realize yet how loved he is. Or maybe he does and that's why he's such a happy and joyful little man.
Don't forget team, we can continue collecting donations throughout the year. So don't be shy about sending out mailers or asking friends and family to donate. The most important thing is to increase awareness about this potentially devastating disease.
Thank you to those that were so generous with their donations and time. Visit our Great Strides Homepage by clicking on the link to check our teams progress.
Team Saltine is off to a great start this year. My mailers are already off in the mail and I hope to have some money trickling in over the next couple of weeks. Perhaps even more walkers will sign up too!
I have a huge following from work that loves to hear about Kai and have been supportive too.
Well dear readers...this here is a photo of the reason for Team Saltine. This is THE SALTINE...Kai.
Why Saltine? Well his Daddy Jerome came up with that nickname because when you kiss Kai on the cheek or forehead, he is very salty. I don't mean that normal salty sweat you can taste even on your own skin...but without a doubt SALT. It's almost like you shook out salt onto a spoon and licked it.
So here he is. I took this photo today while we were goofing off outside.
Gotta love this saltine. He's the best!
Thank you for all the love and support and lets meet and beat our goal!
xoxo
As of this moment, Bridget Shon has collected $330 dollars in donations!!
Great work Mom!!
Let's go team- together we can reach our goal!!
Hugs,
Michellene
Wow, I never cease to be amazed a the overwhelming generosity of others.
Our team has already raised $445 dollars.
Here's the breakdown!
Keep up the great work.
Remind those interested in donating that if they can't now, they can later...our team gets the credit all year!
Team fund-raising goal : $4,000.00 Update
Money raised to date: $445.00
Michellene Fryson(Leader) Raised to date: $245.00
Carissa Shon Raised to date:$200.00
Team Total: $445.00
My mom Julie came down a few weeks ago to help me get my home office organized. It looks a little disorganized at this moment but for GOOD REASON!
I have composed a letter for this year's fundraising efforts and am folding, stuffing, sealing, and stamping envelopes like a crazy woman! Ok, not really crazy but a Mom with a Mission...which I suppose translates to CRAZY.
Check your mail soon for your letter.
If you didn't get one, I may not have your address. I am using my mailing list from the wedding 4 years ago and that means it may be outdated.
Email me right away and I will get a letter to you.
If you are interested in becoming a walker, please either email me and I will sign you up or you can sign up online at:
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=4446&idUser=76460
Just click on Join My Team or you can also get there by clicking the title!
Michellene Fryson is taking strides to make "CF" stand for "Cure Found!" Visit Michellene's GREAT STRIDES Home Page at:
http://www.cff.org/great_strides/MichelleneFryson4446
NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Walker" page, enter Michellene's first and last name and click on "Find Walker." Then click "View Walker" in the results list to go to "Michellene Fryson's GREAT STRIDES Home Page."
Donate today!
Sign up to walk!
We need walkers and donations.
Team Kai's Kure is now TEAM SALTINE.
We have walkers!!
Bridget
Esther
Carissa
Julie
Carissa has already raised $90!! BRAVO!!
Our team goal this year is $4,000. It's only $1,500 more than last year.
We can do it!
Won't you sign up and walk with us!
Walk for Kai?
Wow, it's hard to believe that we have finished yet another month of TOBI. Kai has really been a great little guy. He know what it means when we say, "It's time to do your treatment." He climbs in his chair (big comfy blue chair) and will hold his nebulizer cup all by himself. He's such a big boy!
We now have one month off and then start it again.
*sigh*
Been just a wee bit since I sent out emails and posted here and already we have 3 people signed up for the walk!! WOO HOO!
Come on team! We can blow away last years numbers together! I can't do it without you.
Actually none of my life so far is done without the love and support of YOU so I know you will support me in this too!
Thank you to:
Esther
Kristen
Dave
For already signing up to do the walk!! Together we can find a cure for CF!
xoxoxo
Michellene
It's time to gear up for Great Strides 2007! It's on May 20th this year. Magee Park is the location!
I sure hope you can walk or donate! I increased my personal goal to be $1500. I am hoping that a combined team total can be about 5K!
With your help and your contributions, we can make it happen together!
Won't you walk for Kai?
Click the title above to go directly to my Great Strides homepage for Team Saltine.
I will have an online store at Cafe Press to purchase hats and T-shirts.
xoxoxo
Michellene
Kai's Mom
Well, the most notable person I know that has CF, is Kai. He's not on this list but I do know of a couple of the others that are included on this list.
Click on the title to see the list.
By using the Yahoo search engine at Goodsearch.com you can earn money to fund valuable research for better treatments and possibly even a cure for CF.
Click on the title above and please search with me!
Verify the charity by typing ".CFF" *including* the period and the CFF will come up in Bethesday Maryland.
A penny per search...
Considering I do a lot of searching just for work...I use it now.
No it's not as good as Google...but it's a penny towards the cure.
So, I use it...
I was listening to my favorite late night show Coast to Coast AM . Tonight they had a gentleman,Mr. Charles Ostman who touched on the importance of stem cell research.
Stem cell research already had my vote but he just reinforced my already supported beliefs.
I spoke to both him and Mr. George Noory while on the air and asked about what promises stem cell research has to offer those with cystic fibrosis.
Being that our little guy Kai has CF. I wanted to know since I have heard so much about stem cell research as well as gene therapy. Being that he's not a medical doctor, he did mention that stem cell research has the capability to repair damaged cells. He wasn't familiar with CF but after tonight he at least has heard of it.
I was terribly honored to be talking to George Noory and his guest.
Thank you to Coast to Coast for having such a wonderful program.
PS- The gentleman that answered my call was very very kind and I enjoyed his conversation. He really likes my name. Said it's one of the prettiest he's ever heard and he hears a lot. No doubt if he's getting C2C's calls! Thank you! I didn't catch his name but he sounded quite nice! (He called back just now and his name is Tommy! Thank you Tommy for you-know-what!)
We are starting the official series of OT appts to get this kid to eat. Anyone who has ever tried to get this kid to eat know that it's no small task!
How does he eat you ask?
He still drinks his calories...yep from a bottle. I can't even get this little booger to use a sippy cup.
Little man has texture issues...touching things AND putting things in his mouth with any degree of odd texture he just can't hang with it! He's so funny!
Kai had his first of what is likely to be many appts in OT today. He did really well. We are calling the OT room the "lucky room" because Kai gagged only once the entire time we were there. I was shocked. He ate 1 whole jar of sweet potatotes (pureed of course) and a half of a large jar of the stage 3 Herbed Chicken... He gagged only once on that one.
They want us to take him to speech therapy since he's not talking yet. They said that he should have a vocab of over 20 words...they associate it with him not knowing what to do with his tongue.
So, we have been given exercises to do with him.
Tactile stimulation play before he eats, then we are supposed to do tongue exercises with him...not what you think...more to do with given him things to try to put in his mouth...
He does have an oral aversion...but they have seen worse. We just have to put food on his molars to get him to use his tongue to get the food off his molars.
The gagging, it's just a natural reflex for him...to protect his airway...his tongue isn't accustomed to textured things on it...so it's unfamiliar...so he gags...
Poor kid.
Looks like we will be on our way here soon...then he will hopefully be like Troi and eat us out of the other half of the house! *grin*
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