Thursday, April 01, 2010

23.9 kilograms = 52.6904807 pounds

Well, Kai's cf appointment went good, then it went bad.....sort of.

Good news: Kai's lungs are clear and the remain clear! YAY!
Good news: last visit in August Kai was in the 5Th percentile for weight...he is now....DRUM ROLL the 95Th!! (I have been working my butt off to give him a butt!) All this on liquid nutritional supplements!

Bad news: Kai's pulmonary function test (pft) according to the Dr's is not good. It isn't where they want it to be. (Kai is unable to perform the test adequately or accurately so I personally think this may be incorrect.)

They want to start him on Pulmozyme. The pft is low enough to indicate there may be an obstruction so they want to use this special treatment to break up mucus in his lungs and have him cough it out.

Now that we have this huge gain in weight...they want to push regular food on him. got it...Kai still doesn't eat regular foods like the rest of the family. So if we can get him to eat and use this weight cushion to get him to eat then we will be doing well all the way around. They think his not eating is behavioral. So they want him and me to see a behavioral specialist. Hmm... is no wonder I cannot pick this kid up anymore to put him in his own bed at night!!

Thank you God for continued health and for the advances in medicine today. I don't think Kai has the obstructive mucus in his lungs the Dr. thinks he does...but hey...I am just the mom right? Righhhhhhht. I am going to chat more with Dr's regarding this and see what the consensus is.

Thanks for reading and keep praying for Kai.

The walk is on May 2! Moonlight Beach.


Wednesday, February 03, 2010

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! :)

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!

Saturday, March 21, 2009

Wow!! Walk Time Again!

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.

Sunday, August 05, 2007

Take a Bite!

IMG_2339, originally uploaded by Michellene.

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!

Saturday, July 07, 2007

Cystic Fibrosis Crop @ Scribbles In The Sand!

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!

Sunday, May 20, 2007

Great Strides 2007

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.

Sunday, April 22, 2007

Our Reason For Walking

IMG_2283, originally uploaded by Michellene.

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!