Cystic Fibrosis - Great Strides 2007

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

Notable People with CF

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.

Good Search

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...

Stem Cell Research Gets My Vote

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!)

OT!

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!

OT - Occupational Therapy

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*

Lethal? I think not.

Here is a fascinating "science" article regarding us carriers of the CF gene. For whatever reason, the mutation protects against TB.

Crazy huh?

The article is pretty harsh...talking about how CF is "lethal" and "kills".

Last I heard...there a lot worse things I can thinking of that are lethal and kill:
heroin
drug addictions
loaded guns
drunk drivers...

The list can go on and on...

Blame It On Eve

I came across this interesting article.

Click the title above to read on.

Kindercal Day 2

Well, so far so good.

Kai has been drinking the Kindercal ok...which is definitely better than the Carnation Instant Breakfast, the Pediasure, and the heavy whipping cream they had me feeding him....not all at once though... *grin*

As for his bottles- he's eating the pureed food ok...just not regular people food...the bottles, I do 6 ounces of the Kindercal and 4 ounces of the Half and Half...and he's been drinking the bottles dry!

Let's keep on hoping and praying he keeps this up...

:)

Poop

I hate CF. It really sucks.

I am blessed that Kai has been pretty healthy.

The new thing is trying to pump up the calories while still finding balance between his enzymes. He's on Ultrase EC and he is allowed to have up to 25 capsules in 1 day. Well, when you feed him higher fat content foods, if you don't up the enzymes it just goes right thru him. Meaning that the fat just comes out in his bms. This is bad for Kai because first of all he needs those calories...and second the horrible horrible diaper rash.

We are talking bright red and very very painful. We have tried every single butt paste under the sun. I have even resorted to making my own concoction which is 1 tube of A&D, 1 tube of regular original Desitin, and 40cc of Maalox. I got this recipe from a woman on the Cystic-L listserv.

I have also used Triple Paste. Which isn't cheap!

It's very heartbreaking to hear Kai screaming during a diaper change...and he walks like John Wayne afterwards...John Wayne after riding a horse for too long.

So, we are plagued at this moment with yet another rash...not sure if it's from the malabsorption or from the increase in enzymes...or is it just the new diet!?

KinderCal

Well, looks like insurance doesn't want to cover this special formula for Kai. I decided to not wait until the Dr's battle with the insurance company and just get it filled and pay for it out-of-pocket.

I guess this is considered formula so I can definitely see why they won't. They never paid for the other formula! Breast milk was free...sort of. Free from external monetary costs...but it did have costs in time and effort on my part. I don't expect a pat on the back. I did what I needed to do for Kai.

The KinderCal is 49 dollars per case of 24 - 8 oz cans. So, considering he drinks about 5 bottles a day, it should last at least a few days. I hope he likes it. Pray he does.

Clinic Visit

Kai had a clinic visit on Tuesday 9/26. We saw Dr. Pian and all the wonderful staff at the clinic. They are always so helpful and very informative about anything that I have questions or concerns about.

Kai hadn't gained weight this month. This is a big concern since he was doing so well. We tried the half whole milk and half half & half. We have been doing everything we can, but still no weight gain.

It would be easier if the little guy would eat food. He doesn't want to eat regular food. He gags and has what I believe is an oral aversion. He's never been one to put things in his mouth. So, it has never concerned me about the food until now. Calories are easier to get in if he's eating food.

We already put oil and butter in his food.

We have an appt with OT next week. It will be first of a few I believe since we will be working on getting this little guy to eat food. I know once we get him to do that he will be well on his way.

This clinic visit, I did't write any stats down. I was so focused on the weight that I didn't get what his length was. His wt. was 11.245 kg. His length???? I don't know.

Say a prayer for Kai. He needs to be getting chunky like mom.

We did get a new mask for his neb treatments. It's the bubbles mask. It looks like a little fish. It's cute. I asked about the length of time for the TOBI treatments. I told the RT that it takes up to 27 minutes to do. He said it's ok and it's supposed to. Any longer than 30 though just stop. I am not complaining by any means...I actually enjoy that time with Kai. We sit watching Sesame Street or Jack's Big Music Show. He sees me with the neb cup and mask and he just climbs in my lap. It's pretty cool.

We are off TOBI for the month. We start again in 3 weeks.

I will post again when I have more information and I will let you know how the OT appt goes.

Hugs,
M

Goodsearch

Look at us now! Wow! With you help so far - here are the stats from just a moment ago..

Amount Raised
.Cystic Fibrosis Foundation - CFF (Bethesda, MD)
ID: 154488

Year: 2005 2006
Month Searches Amount Raised (Estimated)
January 889 $8.89
February 2636 $26.36
March 5409 $54.09
April 3606 $36.06
May 3191 $31.91
June 3040 $30.40
July 4727 $47.27
August 20957 $209.57
September 30416 $304.16
Total 74871 $748.71

Cadbury's Roses

This is a story written by a mom to a cf'er.

Her daughter (with CF) actually has a pink bunny named Cadbury.

Read this story for kids about cf.


Untitled Document

Good Search

Do you seach the internet frequently? More than 2 times per day? I know that I do.

If you go to:
http://www.goodsearch.com/Default.aspx

You can use this seach engine and earn money for cf.

Just select:
.Cystic Fibrosis Foundation-CFF (Bethesda, MD)

For each search, .01 is earned.

Cool huh?

Formerly Known as Kai's Kure

Well, the name was so cute while it lasted. Being that we are going to be doing the fund raising thing for many years to come, I decided to change the name from "Kai's Kure" to "Team Saltine".

Why? Well, Kai isn't going to be a baby forever. He is also not the only cf-er out there. We raise not only money to fund research for a cure but awareness about the disease. When I picked the first name, it was at a time when were were so very new to the cf thing. What I mean is, we still are new to it to a great extent, but we learn more with each clinic visit and with each day.

This blog is for all those that walk with us each year during the annual Great Strides event. It's also for everyone that walks with us during the day to day events, the moment to moment things that really make you all a part of Team Saltine...as well as Kai's Kure.

I encourage anyone reading this to visit, www.cff.org for more information about cystic fibrosis. This disease is not a death sentence. It's a life sentence...a life that is as rewarding as we make it. It is what it is...

We know it's a life-shortening disease that just sucks the breath out of everyone it touches.

Please read more about it. Check back here often...as I will post not only fundraising events...but also news on our Little Saltine, Kai Michael.

Love you and thank you for stopping by!

Michellene