A Cure 4 Lil' Chris: Ayla's First Visitor's

Thursday, February 12, 2009

Ayla's First Visitor's

Sorry I haven't posted recently. The kiddo's don't like to sleep at the same time :0

Anyways, my mother-in-law(MIL) and father-in-law(FIL) were here from Thurs 2/5 - Mon 2/9. They were Ayla's first visitor's! I, along with my MIL took lots of pics:) Here are some of them... (I love the video's in this montage, they are so cute:)

Make an on-line slide show at www.OneTrueMedia.com

Believe it or not, those were only the pics that my MIL took:) LOL It took me all day to just download those. I'll post the pics I took later;)

My MIL came up with the names "Oma" and "Opa" for the grandkids to call them. I think they mean Grandma and Grandpa in German. She tried to get Lil' Chris to say the names and he did! It was so cute! He is so smart!!

Special thanks to my MIL for staying up every night with Ayla!! It was soooooooo nice catching up on some much needed sleep;) And also thanks for cooking and doing the dishes and cleaning up all of the toys after every time Lil' Chris played with them!! She even made sure our house was in shape for our next set of visitors!! Thanks again Oma!!!

Special thanks to my FIL for helping my husband do some projects around the house;) We love the dimmer switch in Ayla's room and the dinning room;) Now we won't roast when we play our games at the table;) Gotta love game nights;)

Now we are waiting for our next set of visitors. My best friend Christi and her husband are coming this Sat-Mon. I'll try to get lots more pics;) I know Christi will:)
M
PS. 2 week pics coming soon:)

5 comments:

My Three Sons said...: Oma sounds wonderful. I think grandparents are the best!!

I'm glad everything is going well. Just think, if you plan visitors everyweek, you will be able to get a lot of rest. LOL; February 13, 2009 at 2:00 AM
Oma & Opa said...: The montage is so cute the way you put it together. It was my pleasure to help you in any way that I could, I only wish I could have done more. My Three Sons has a good idea about having visitors every week, by the time the visitors slow down Ayla may be sleeping through the night...lol.
Can't wait to see the pics you took.
Lots of love, hugs & kisses
Mom; February 13, 2009 at 9:11 AM
Aunt D. said...: Hey M! The montage was so great! I can't wait to get there & hold those little cuties for myself. Ayla reminds me so much of Cara when she was teeny tiny...makes me sad that she got so big so fast. =)

Keep the pics & videos coming!! I love seeing them. I'm looking at the first wkend in March for my visit if that's okay with you guys. I can't wait!!; February 13, 2009 at 11:14 AM
Courtnie said...: She is changing so much already!

Our families are a lot alike. I seriously can not believe that she doesn't have CF. I can't remember what it feels like to nurse or give a bottle without having the ordeal of enzymes first. It will be so nice!; February 13, 2009 at 4:06 PM
Auntie Steph said...: Love the montage!!! I can't wait to come visit this weekend, and play with my nephew and hold my niece!
Love and hugs,
Steph; February 15, 2009 at 10:22 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.

Thursday, February 12, 2009

Ayla's First Visitor's

5 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.

Thursday, February 12, 2009

Ayla's First Visitor's

5 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!