A Cure 4 Lil' Chris: We've got our own domain name!

Sunday, March 30, 2008

We've got our own domain name!

So my husband is a little bit of a computer geek....well both of us are I suppose but as professions go it hasn't been a half bad deal for us. The personal upside for me is that my husband is always looking for ways that technology can enhance our every day lives. Yesterday he decided that our little blog should have it's own domain name to make it easier for people to get to us. So thanks to my husband "S" you now only need www.acure4lilchris.com to get to our blog. Woo hoo! Thanks S...hope you're enjoying your mid-afternoon nap while I'm keeping an eye on the kids! (He's going to just love that when he sees it!)

Hope everyone is having a nice weekend! Here is a cute pic of Lil Chris that I took a couple weeks ago when they were visiting. He's such a cutie pie, isn't he? D.

2 comments:

Auntie Steph said...: I am Lil' Chris' other aunt, the one whose family invaded his house this past week! :) Anyway, I just want to say, First, what an absolutely beautiful, 'fat cheeks' baby his is. I just love him to pieces! Second, thanks to his computer savvy aunt D, for getting this blog started. It's great! This was the first I have been able to view it, and I sit here, hooked on reading every blog and comment, even though I still need to finish unpacking and getting my house in order! I am full of emotion, remembering my first phone call, and all the waiting and testing and news of possible CF, possible down syndrome. I opted out of all additional testing for my second child, because I was having him no matter what the tests said. The emotions I felt when I found out my brother and sister-in-law were both carriers, and the emotions I felt and still feel now, knowing my nephew has CF. I feel helpless, and unsure of what I can do for M, Big C, & Lil C! M and Big C, I am here for you guys, and I love you guys all so very much!; March 31, 2008 at 10:46 AM
Auntie Steph said...: He looks just like his Daddy in this picture!; March 31, 2008 at 10:47 AM

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Lil' Chris' Med List

Last updated: 5/1/17

Age: 9

Gene Type: Double Delta F508

Diagnosed with Cystic Fibrosis at 2 weeks old

Digestive:

Enzymes- 3 Creon 12,000 with every meal and snack

Vitamins- 1 chewable Aquadeks once a day

Reflux- 1 Prevacid Capsule(15mg)once a day to help enzymes work better

Respiratory:

Hill Rom Vest 2 times a day for 30 minutes each

-Frequency 10 Hz for 10 min, then switch to 12 Hz for another 10 min., then switch to 14 Hz for another 10 min. two times a day

-Pressure set at 5 for first 20 min, then 4 for last 10 min.

-Currently at 1,850+ hours total (been using since he was 11 months old) (Got a new machine, so lost count now.)

-Upped his Creon 6000 enzymes from 3 to 5 on 1/1/13 due to stomachaches. Switched to Creon 12000 on 1/29/15. 2 with each meal and snack(7yrs old).

-He started his first nebulizer, Pulmozyme, on July 1, 2012 at 5 yrs old. He uses Albuterol inhaler and the Acapella when he has a bad cough.

-His first TOBI treatment was on 11/5/12, b/c he cultured Pseudomonas for the first time:( Also first time taking Cipro. 5 yrs old.

-Started Claritin for allergies on 5/8/13

-1st liver ultrasound in 2016

-1st glucose test 6/21/17

He has never had any sinus problems... Praise the Lord!

Last CF Clinic Visit: 3/15/17
Weight: 76 lbs. 5 oz.
Height: inches
BMI: 42 percentile
PFT: 111/110

Next CF Clinic Visit: 6/21/17 at 7:50am

We are VERY blessed as to how well Lil' Chris is doing and has never been hospitalized. Please pray with us that he will continue to do well and stay as healthy as possible.

Thanks,
M

Start here!

Hi! I'm a CF Mom (M) and my son is Lil' Chris. He is 10 years old. He's not so little anymore, so we just call him Chris or CJ now;) He was born with a fatal genetic lung disease called Cystic Fibrosis. This is where I keep a record of EVERYTHING(including lots of pictures and videos:) My sister(D) and I started this blog to not only keep a record of everything and keep family updated, but to interact with other CF families as well. That way we can all help each other out by sharing useful information:) I've learned soooo much already and so can you! Come along for the ride! I try to update whenever I can=)

This is a great spot to start out on our blog so you know our story...Start Here

PS. Lil' Chris has a lil' sister named Ayla(pronounced long A-luh)! She is 20 months younger than Chris and does not have CF and isn't even a carrier.

Lil' Chris' Antibiotic List for Coughs

9/12/09 Start Augmentin for 21 days for a cough from a cold.

3/9/10 Start Augmentin for 21 days for a bad cough from a cold.

5/3/10 Start Bactrim for 14 days for bad cough from a cold.

7/12/10 Start Augmentin for 14 days at 3ml 2x a day from a cold again.

9/15/10 Start Augmentn for 14 days at 3.5 ml 2x a day for a bad cough following a cold.

1/11/11 Augmentin for first ear infection

2/10/11 Started Bactrim for wet cough...no cold.

9/6/11 1st time on Omnicef for bad cough-from cold/allergies

1/30/12 Bactrim for 15 days 12.5 ml - weird cough after Disney

3/30/12 Started Azithromycin 5ml 1st day and then 2.5ml for next 4 days-wet cough after cold/allergies

9/17/12 Amoxicillin for Strep throat

10/24/12 Omnicef capsules once daily for 21 days for wet cough from cold. Also Flonase 2 sprays 2x daily**update**=did not finish either. Cultured PA, so stopped Omnicef to start Cipro and TOBI. Will do Flonase every other day.

11/5/12 Cultured Pseudomonas A, so started Cipro 250mg 2x a day for 21 days AND TOBI for 28 days(first time)

1/16/13 Cultured Pseudomonas again, so started Cipro and TOBI for 28 days again. (no cough)

12/29/13 Bactrim for wet cough, possibly from allergies. 14 days 3tsp 2x a day.

NONE IN 2014 YEA!!!!

Once in 2015 & 2016

Lil' Chris' Cold/Cough List

9/7/09 Runny nose for 2 days, then a cough.
10/21/09 Runny nose, only coughed when doing Vest. Up practically all night the last 2 nights.
12/28/09 Started a really weird sounding cough, no runny nose. Woke up kinda wheezing the next morning and hard to breathe. Cough lasted about 5 days and then went away with no antibiotics thankfully.
2/27/10 Started a runny nose and has had a dry cough for about 2 weeks.
3/2/10 Started wet cough and nose really plugged up and having drainage.
5/3/10 Cold and cough.
7/8/10 Cold after vaca, then turned into bad cough.
9/6/10 Stuffy nose/drainage=cold;(
9/10/10 Cough started, turned into a wet cough on 9/11
2/10/11 Has had a cough for about 2 weeks turned into a wet cough. No cold, but got headaches above right eye.
4/14/11 He caught Ayla's cold after a mini vaca w/o Vitamin D 6/6/11 Woke up with weird sounding cough which turned into a wet cough.
8/2/11 Cold & dry cough after 2 days of VBS and Church
8/5/11 Cold gone, but has wet cough now
9/6/11 Cold/Allergies turned into wet cough.
1/24/12 Weird barking cough turned into wet cough at Disney
3/21/12 Wet cough from cold/allergies-80 degrees in March
10/17/12 Started wet cough from cold.
3/7/13 Cold, no cough
5/8/13 Tiny productive cough, but we think b/c of allergies. was given Claritin and cough stopped, but still stuffy nose in AM.
6/29/13 Tiny productive cough, maybe allergies. Did excessive treatments and it went away without antibiotics:)
8/30/13 Cold, but no bad cough:)
12/20/13 Productive Cough and stuffy nose(got new Vest machine with cough pause option). May be allergies??? Crazy weather lately...60's, then 20's, etc.
12/29/13 We cough continued, so started Bactrim
2014 No major coughs, just few days after colds.

A Cure 4 Lil' Chris

Our old CF Commercial that plays on MCTV. Still working on this years.

Sunday, March 30, 2008

We've got our own domain name!

2 comments:

Followers

Email Us

Welcome To Joshland!!

Lil' Chris' Med List

Search My Blog for Anything =)

Start here!

Culture Results

Weight, Height, & BMI List

Lil' Chris' Antibiotic List for Coughs

Lil' Chris' Cold/Cough List

Fevers

Chaia Updates

My Blog Button

A Cure 4 Lil' Chris

Fellow CF Mom Bloggers

Adult CF Bloggers

Other Cool Blogs I Follow

Blog Archive

Cure CF 4 Reilly

Phenny's Fight

Thanks Carrie for this Blog Award

Thanks Angela for the blog award!

Thanks for the blog award Alicia!

Our Visitor Map!

Labels

CF Links of Note!

A Cure 4 Lil' Chris

Our old CF Commercial that plays on MCTV. Still working on this years.

Sunday, March 30, 2008

We've got our own domain name!

2 comments:

Followers

Email Us

Subscribe To A Cure 4 Lil' Chris

Welcome To Joshland!!

Lil' Chris' Med List

Search My Blog for Anything =)

Start here!

Culture Results

Weight, Height, & BMI List

Lil' Chris' Antibiotic List for Coughs

Lil' Chris' Cold/Cough List

Fevers

Chaia Updates

My Blog Button

A Cure 4 Lil' Chris

Fellow CF Mom Bloggers

Adult CF Bloggers

Other Cool Blogs I Follow

Blog Archive

Cure CF 4 Reilly

Phenny's Fight

Thanks Carrie for this Blog Award

Thanks Angela for the blog award!

Thanks for the blog award Alicia!

Our Visitor Map!

Labels

CF Links of Note!