A Cure 4 Lil' Chris: Christi & Dustin's Visit and Valentine's Day

Thursday, February 19, 2009

Christi & Dustin's Visit and Valentine's Day

Make an on-line slideshow at www.OneTrueMedia.com

Here are the pics I promised from when my best friend Christi and her husband, Dustin, came to visit, and from Valentine's Day. I can't wait til they have kids too:) I only wish that they lived closer to us:(

Thanks Christi and Dustin for traveling so far to see us:) And thank you guys for the adorable dress and onsies for Ayla and for the fun toy for Lil' Chris:) He hasn't stopped playing with it=) Thanks for wiping it down before you wrapped it too, you always think of everything;)

Thanks for babysitting and "making" us go out to dinner for Valentine's Day...it's been a looooong time;) You guys did such a great job with Lil' Chris and Ayla!! I appreciated the nice break from doing everything too;) You guys are the best!!!

Last but not least, thank you soooooo much Christi and Dustin for doubling Lil' Chris' medical fund and for making all the beautiful jewelry and for selling them for Lil' Chris!! You guys have such big giving hearts, and it shows how much you love Lil' Chris!! We can't thank you enough!!

Come visit again real soon:) We Love You!!!
M
PS. I'll post pics of the beautiful jewelry later, and Ayla's 3 week pic;)
PSS. Don't you just love the video where Lil' Chris keeps kissing his lil' sis;)

4 comments:

Aunt D. said...: That was so cute!! Looks like you guys had a great visit! I'm so glad you & Chris got out by yourselves for a little while. You'll have to do the same thing when I'm visiting next weekend!! =) Can't wait to see you guys!; February 19, 2009 at 7:58 PM
Christy said...: Wow what great pictures. The one of Ayla yawning is SO precious. Lil' Chris looks so in love with his Lil' sis.

I think lil Chris liked Ayla's clothes. :); February 19, 2009 at 9:55 PM
Anonymous said...: M,
I miss you guys so much now!!! STILL! I need to see you and those babies more often.... and you were right.... the trip wasn't so bad :-) what's 8 hrs really? :-) We had a great time and you and Chris made us feel so welcome and comfortable in your home. Thank you for that! That was one of my very best valentine's weekends :-)
I love you guys!!!

Love,
Aunt Christi :-); February 20, 2009 at 7:12 AM
Auntie Steph said...: Love the video of Lil Chris kissing Ayla...too cute! Ayla has the BEST big brother, he's gonna always be there for her and protect her!
So glad you guys had a good visit and a nice kid free evening to yourselves!
Tons of hugs & kisses; February 20, 2009 at 1:19 PM

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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.

Thursday, February 19, 2009

Christi & Dustin's Visit and Valentine's Day

4 comments:

Followers

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Welcome To Joshland!!

Lil' Chris' Med List

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Start here!

Culture Results

Weight, Height, & BMI List

Lil' Chris' Antibiotic List for Coughs

Lil' Chris' Cold/Cough List

Fevers

Chaia Updates

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A Cure 4 Lil' Chris

Fellow CF Mom Bloggers

Adult CF Bloggers

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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.

Thursday, February 19, 2009

Christi & Dustin's Visit and Valentine's Day

4 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!