CF Update & Stuffy Nose

Lil' Chris has been doing much better! Thank you everyone for all your prayers:) His cough is all gone, except he does cough sometimes when he is doing his Vest(that's not a bad thing though;) We are still waiting on his throat culture results.

My next dilemma...
For the last few days or maybe even a week now, his nose has been really stuffy. It isn't runny, just stuffy. He will blow for us, but it never seems to be clear. I'm not sure if it has anything to do with his CF or not. I know CFers are prone to get nose polyps, but I don't think that is what he is getting. Although he does have some bloody boogers once in awhile. Is this the start of getting nose polyps??? What are symptoms of nose polyps?? I've seen a pic of what they look like on someones blog or caringbridge site once(I think it was Aidan's), and I don't see those in Chris' nose. Maybe he just has a stuffy nose or maybe allergies, IDK. I wish it would go away though, b/c he can't breathe through is nose barely at all. His lips are getting so chapped, b/c he has to breathe through his mouth all day and night.

Any CFers or CF moms have any insight on this??
Thanks,
M

Ayla's First time in the Snow:)

I love this pic of him:)

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Yesterday we took this kids out in the snow for the first time this year;) It was Ayla's FIRST time in the snow!! YEA!!! She wasn't too sure about it. She barely moved the whole time...although that may have been b/c she was all bundled up;-) LOL "I can't put my arms down!" LOL She went on her first sled ride and her big brother got to pull her:) She almost got to make a snow angel...maybe next time. It's supposed to snow everyday until Sat or Sun. Hopefully we'll get to go out in the snow again tomorrow:)
M
PS. Still editing the Christmas pics:) Coming soon.

Top 9 of 2009 and Top 10 for 2010!!! Try it:)

Top 9 of 2009 that God has blessed us with...

1. Lil' Chris and another GREAT "HEALTHY" year!!!!

2. The quick and painless birth of my baby girl....Ayla Christi, who was born without Cystic Fibrosis:) YEA!!

3. The love from all my bloggy buddies the whole year through;) Thank you guys;-)

4. Lil' Chris getting potty trained(at least during the day;) and NO MORE BINKY!! YEA!!

5. Our wonderful house and cars with no breakdowns or accidents:)

6. Our jobs and our health.

7. All the fun things we got to do this year...Cedar Point twice, Geauga Lake, NJ Boardwalk, Maine, Camping, and of course Kalahari:) Lil' Chris loved every bit of them all;-)

8. Reconnecting with family and friends on Facebook:)

9. Raised $4,440 to help find a CURE for Cystic Fibrosis for my son and all CFers!

Top 10 for 2010 that I'd like to achieve...

1. Another "healthy" year for Lil' Chris with no nebulizers again.

2. No hospital stays or emergency visits.

3. Lil' Chris to swallow him enzymes all by himself without applesauce.

4. Lil' Chris to get potty trained at nap time and night time.

5. Lil' Chris to start using his big boy bed.

6. Ayla to get potty trained too;-) That would be nice...NO More Diapers EVER!!! :)

7. All of us to stay as healthy as possible.

8. For my husband or I to move up in our jobs or find better paying ones:)

9. To raise $5,000 or more for a CURE for Cystic Fibrosis!!!

10. And of course.......Go to DISNEY WORLD!!! YEA!!!

I think you should do the same that I did above! Give it a whirl! Then at the end of 2010 you can look back and see what you DID get accomplished from your list of "things to achieve";-) Have Fun:)

I hope everyone has a Happy, Safe, and HEALTHY 2010!!!

M

PS. Christmas pics are still being edited...coming soon;)

HAPPY NEW YEAR!!!

I hope everyone has a HAPPY, SAFE, AND HEALTHY NEW YEAR!!!

CF Clinic Visit 12/30/09 and Vest Hose Breaking

Look how big he is getting!!!

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Thank you all so much for all your prayers. They definitely worked:)

To my surprise, Lil' Chris had a GREAT CF clinic visit today!!! YEA!!! After what happened on Monday, I really thought we were going to come on a nebulizer! But the doctor didn't even give him an antibiotic!! YEA!! He really is doing much better than he was on Monday. The doctor said he must have caught a virus or something. He may have even caught what I had and then what Ayla had...it just effected him differently. I remember being told from the first day he was diagnosed that just the common cold to us could mean a hospital stay for him. That is why I always carry my sanitizer at work, and why I wear my mask when I get sick.

I'm not sure what Lil' Chris weighed, I forgot to ask until the end, but we had to go b/c my hubby had to go to work right afterwards:( The doctor did say that his height was 36.5 inches and in the 56th percentile. His BMI was 54%, so I guess his weight must not have been too bad...YEA!!! They want CFers to be above 50%. His blood oxygen level was 97% and they like CFers to be above 96%, so that's good. The doctor said his lungs are as clear as a bell!!! I couldn't be more happy to hear those words;) He said overall, he is doing GREAT and that he doesn't want to change anything at this time:) YEA!!! Thank You Lord!!! He did say though, that if his cough gets worse than we should call and he will put him on an antibiotic right away. Our next clinic appt is in 3 months on March 31st. I'll let you know what the results of his throat culture is when I find out. Please pray that it comes back "normal".

Before the doctor came in, a lady came in to see how we are doing with the Vest. She asked a few questions and then I told her that one of the hoses has started to come apart. I barely got the words out of my mouth and she was saying that she would get new ones sent out right away! She said we don't have to worry about insurance covering it or anything. It's one of the perks to having the Vest...you can get anything replaced right away at no cost!! It's hard to explain how the hose started falling apart, so I took a lil' video of it...(CFers, let me know if this has ever happened to your Vest hoses too. There are no holes, just the rings started coming off)......

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

M

PS. Christmas pics are coming soon:) It took me 2 days to upload them all with my new 12.0 mega pixels camera;-) Now I just have to edit it and then I will post them.

Update on Lil' Chris' Breathing

Thank you everyone for your prayers. We greatly appreciate them:) Lil' Chris is better today, although I wasn't with him much last night or today b/c I had to work. He still sounds really weird when he coughs or talks, but at least he is talking today, b/c yesterday he would only whisper. He is playing more today too instead of just wanting to be rocked or held, so that is a good sign. It still sounds like he's got something in there though, but he can't get it out:( Boo!!

We still aren't sure exactly what's wrong. Maybe he has or had a sore throat, or maybe he got some yucky bacteria in his lil' lungs:( Ayla was coughing, so maybe he got it from her. IDK. I called our CF clinic(Akron Children's Hospital) yesterday and they just said to up his Vest to 3-4 times a day until his clinic visit Wednesday(tomorrow). Poor kid...that's TWO HOURS sitting still while a machine shakes his lil' body;(

The nurse on the phone said that it may be time to start nebulizer treatments(she said this last time he had a cough too;). I kinda hope we DON'T have to start these, b/c it's gonna make his treatment times WAY longer EVERYDAY for the rest of his LIFE!!! But...I kinda WANT to start them, b/c Lil' Chris is the only CFer I know that has never done any nebs .... and that makes me wonder, b/c I know A LOT of CFer's young and old.

I'll update you again tomorrow after our clinic appointment. Please pray that his throat culture comes back normal, that he doesn't need a neb, and if he does need a neb that he does well with it, and please pray that his weight it up(not too sure it's going to be, b/c the last couple of days he has not wanted to eat much at all;(

Thanks again for all your prayers,
M
PS. Thank you soooooo much Heather for calling me yesterday to help me figure out what was wrong with Lil' Chris. And thank you for all the great advice after listening to him over the phone!! You are a GREAT CF mom and I look up to you so much:) Thanks again:)

Breathing Weird

Please pray for Lil' Chris. He woke up at 12:30 in the morning yesterday with a weird sounding cough and then coughed off and on throughout the day. Then when he woke up this morning, he sounded REALLY bad! It seemed as though he was having a hard time breathing. We could hear weird noises every time he took a breath. I'm not sure if it is wheezing or not, b/c this is the first time he has ever done this. It was very unlike him not to get excited about the snow that had fallen throughout the night and all he wanted to do was be rocked for a while. He doesn't want to eat anything except his Danimal's which is good, b/c at least he is getting some yogurt into him. We did his Vest and he just wanted to sit on my lap the whole time instead of on the floor playing.

He has been so needy that I didn't have time to finish my post. He sounds a little bit better, so I have decided to go to work. I told the sitter to just call if he gets worse. Pray that he doesn't.
M
PS. I'll update again tomorrow.

"Ho Ho Ho, Merrrrrrry Christmas!"

MERRY CHRISTMAS EVERYONE!!

I hope your holidays are bright:)

I'll make sure to take lots of pics of Lil' Chris tearing into his presents, and lots of pics of Ayla's first Christmas:) Be looking for them soon:)

Have a safe and healthy Christmas Everyone,

M

PS. Every time Lil' Chris sees a Santa he says, "Ho Ho Ho, Merrrrrrrry Christmas!" Too cute:) I think I am more excited than Lil' Chris this year:) I just know he is going to have soooo much fun, and I can't wait to see the look on his face when he sees some of his presents;-)