Our 2015 CF Commercial that plays on MCTV

Thursday, December 31, 2009

HAPPY NEW YEAR!!!


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

Wednesday, December 30, 2009

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

Look how big he is getting!!!

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)......


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.

Tuesday, December 29, 2009

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:)

Monday, December 28, 2009

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.

Wednesday, December 23, 2009

"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;-)

Tuesday, December 22, 2009

CF Patient Registry


Click here to read an article that explains the "registry" of CF patients. I don't think I have ever talked about this before. I can remember the social worker telling us about this registry that they keep of all CF patients on our second visit to the CF clinic, right after he was diagnosed. I thought it was pretty cool that they keep track of everything since everyone is different and certain meds effect people differently. Plus it's good for knowing about possible clinical trials you are eligible for. They explain it much better, so just click the link above;) lol

We are so excited about Christmas this year!!! Only 2 more days!!! We gave Lil' Chris a gift early and he LOVED it!! Then he wanted more gifts! He kept saying..."More presents?? More presents??" It should be a lot of fun this year:) I bet he is going to tear into all of them in no time! This kid just puts a smile on my face EVERYDAY!!! With all that he goes thru, I don't know how he can be such a happy kid. I just love him SOOOOOO MUCH!!!

Praying for Phenny and Reilly who had to go to the hospital. Glad they can be home for Christmas:)


This is from Aidan's(a CFer in Kindergarten) mom on facebook.....Aidan's comment tonight totally out of the blue....."Christmas time is just so magical, mom. Wouldn't it be great if the magic took my CF away?" The one present he really wants and the one I can't give....yet....

If you want to get me or Lil' Chris a present for Christmas, you can donate to help find a CURE! Click here to donate:) Thank you sooooo much!!


Click here to see Santa's message to Lil' Chris:)
M
PS. My cold wasn't so bad and didn't last long, so thank you for all your prayers;-) Thankfully the kids never caught it:) YEA!! Gotta love hospital masks;)

Thursday, December 17, 2009

400 Hours on the Vest/Important CF Stuff

Lil' Chris has reached 400 hours on his Vest! Crazy when you think that in the past 19 months, my son has sat still(or somewhat still;) for 400 hours while a vibrating vest shakes the mucus out of his lungs. Poor kid is only 2 1/2!!!! Looking at the pics, it's hard to believe that Lil' Chris was Ayla's age now when he first got his Vest!! I should dig up some of those pics on of these days:) This video was taken on Tues 12/15 when he reached 400 hours. At the end are a couple of pics and a video of him playing a balloon guitar he got from an elf at the mall...he LOVES guitars!!


Lil' Chris has a CF clinic appt on the 30th, so we are trying to get him to eat as much as possible to get his weight up, but it's hard when he refuses to eat anything;-( I can't wait until he grows out of this stage! I'll take any advice you may have for a very picky eater.

Both Lil' Chris and Ayla got their H1N1 booster shot last Wed. Ayla also got her Season flu booster shot too, then she had her regular check up...she weighs 21 lbs and 6 oz., and is 30 inches tall!!! My lil' piglet;-) She is in the 75th percentile for her weight and in the 90th percentile for her height!!! Our dr always laughs at me when my jaw drops every time I hear 90...I'm just not used to hearing 90, I don't think Lil' Chris was ever in the 90's for anything...I'll have to look at my records;-) I WISH I would hear 90 for Lil' Chris:) Someday, someday;)

Please say a prayer for Wesley's family. He passed away from Cystic Fibrosis yesterday and he was only 17. He got his wish...to know what it was like to breathe...he had new lungs for a year before he passed. Just breaks my heart. A double lung transplant isn't a cure. Click here to read Wesley's page.

Click here to read a very interesting article about how a CFer in the UK was saved by receiving "salvaged" lungs. Lungs that would have been unsuitable. This could be HUGE for CFers if this comes to the states!!!

Lastly, check out this new drug that could really help CFers as well...click here to read about aztreonam lysine for inhalation. The drug would offer a much-needed antibiotic alternative for cystic fibrosis patients who battle recurrent lung infections and often develop resistance to existing antibiotics. It is manufactured by Gilead and will fight against Pseudomonas Aeruginosa infections in the airways of Cystic Fibrosis patients. It has already been approved in both Europe & Australia under the name Cayston(R) and the US has been lagging behind in its approval. Our Cystic Fibrosis patients with Pseudomonas Aeruginosa are running out of antibiotic options to help fight infections in their lungs. Please email druginfo@fda.hhs.gov to help get this drug approved if you are a CFer or a caretaker of a CFer. Just send a short emial stating how much this could effect your life or child's life. Also copy the Commissioner of the FDA too margaret.hamburg@fda.hhs.gov and then bcc the CFF at publicpolicy@cff.org. Thanks so much for helping get this important drug approved as about 60% of people with Cystic Fibrosis have a chronic respiratory infection caused by the bacteria called Pseudomonas Aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas Aeruginosa is almost impossible to get rid of. Respiratory failure caused by this infection is often the ultimate cause of death in many people suffering from Cystic Fibrosis.

Until there is a CURE...
M
PS. I have to wear my hospital mask for the next few days, since I got a cold last night;-( Ughhhh!!! Please pray that the kids don't get sick too, esp Lil' Chris.

Tuesday, December 8, 2009

Updates on the Kiddos:)

Lil' Chris has been doing ok without his binky so far. We had a few rough times getting him to go down for a nap, but hopefully that will get better soon. What am I saying....it's been a NIGHTMARE!!!! Just kidding:) LOL Sometimes it can seem like that, but then other times he goes right down! He'll ask for his binky once, and then that's it!! He even did a GREAT job for the babysitter yesterday! He took a nap AND went to bed for her with hardly any problems! When he doesn't do good, he likes to play a game with us..."Potty! Potty!" Take him in there... "No potty." Put him back in bed..."Potty! Potty!" Take him in there..."No potty." He just keeps doing it over and over. He knows we are trying to potty train him, so I am hesitant to not put him on the potty when he says he has to go. This kid is just too smart!!! Any ideas for me before I go completely grey???? Or bald??? You know, before I pull all my hair out;-) LOL

In other news....he continues to do a GREAT job with potty training. We took the little potty out, so now he only uses the big potty. He still is not potty trained for nap and night time, but we'll get there eventually:)

I've been worried lately that Lil' Chris hasn't been eating enough. We have a CF clinic appt on the 30th and I don't want his weight to be down. We usually try to give him real food and then if he doesn't eat a lot, we give him some baby food. Well...I took him off of baby food for a few weeks and he lost THREE lbs!!! Food has always been a touchy subject when it came to Lil' Chris. We never tried to push or make him eat, b/c he will just gag and throw it up or we would be afraid of making eating time an unpleasant time. Eating is sooooo important for him that we didn't want to do that, but.....it has come to the point that nothing else is working, so we have no other choice but to be harder on him to eat the food that is put in front of him. If he won't eat it, we say "take 3 bites than you can have your yogurt." He always wants his Danimals or Go-Gurts. So far, we have been shocked that he will actually eat the 3 bites after a little bit of fighting. I figure that getting the food in his mouth will get him used to the taste and used to eating those kinds of foods. I'll keep you updated on how he progresses. Click here to see some weight gaining strategies if you need them too. Let me know if you have any ideas for me:)

Ayla has been crawling around EVERYWHERE!! She can even go side to side now and turn around:) She also can pull herself up on the couch so she is standing! Pretty soon she will be scooting herself around the couches:) Then she'll be walking and running ALL over!! She's so cute:) Oh yeah, she's been trying to climb the stairs!!! Won't be long now;)

She now says "night night" when she gets sleepy, claps when people clap on TV, claps when anyone says "Yea!", shakes her head "no" when someone says "no", shakes her head "yes" when someone says "yes", and is always standing up in her crib when we go in to get her;) She also has been eating so much more! She eats all the stage 3 foods and eats ALL the snacks that Lil' Chris eats! If I try to feed Lil' Chris something, she crawls over and starts whining until I give her some;-) Too funny! She eats it FASTER than him too! Even Chris and I can't eat something without her wanting some;-)

Ayla also likes to dance to music too;) Her brother definitely rubbed off on her;-)
M
PS. Do you like the new header pic??? More to come this month;-)

Monday, December 7, 2009

Miley Cyrus' tattoo says "Just Breathe"

Miley Cyrus got a tattoo that says..."Just Breathe" Yea! Finally some media about Cystic Fibrosis!! You go, Miley!!! Click these two links to read some articles about her and her new tattoo:)

http://www.examiner.com/x-11363-Dallas-TV-Examiner~y2009m12d6-Miley-Cyrus-tattoo-has-positive-meaning

http://www.buddytv.com/articles/hannah-montana/hannah-montana-why-miley-cyrus-33105.aspx

Sunday, December 6, 2009

NO MORE BINKY!! YEA!!


Lil' Chris hit a HUGE milestone yesterday and last night! Yesterday, when I was putting him down for a nap I noticed that his binky was split down the middle! I thought..."YES! Perfect time to get rid of the binky... FINALLY!" So I explained to him that his binky is broken and he can't use it anymore. So we threw it in the trash and I told him that he is a big boy and can sleep without it. To my surprise....HE FELL RIGHT TO SLEEP!! No fussing or crying! WOW!!! Then he had a really good long nap too!!

When I put him down for the night, I thought he was NEVER going to go to sleep without his binky. He has relied on a binky from day 1 practically(see his special ducky binky above;). I think it was when he turned 1 when we only let him have it at night time and nap time... oh yeah and he gets it in the car too(keeps him quiet and helps him sleep;)
So when I put him down for bed last night, I was expecting it to take a REALLY long time, esp when he asked for his binky right as I laid him down. He cried for a little, but after 15-20 minutes of playing games with me...HE FELL ASLEEP! I couldn't believe it!! I thought for sure that he was going to wake up in the middle of the night crying for his binky like he used to when it would fall out of the crib, but NOPE! HE SLEPT THE WHOLE NIGHT THRU!! What a good boy;-)
When we went to go get our Santa pics today, I forgot to get the binky out of the car. As soon as he saw it, he popped it in his mouth and grabbed the top of his shirt like he always does;) He got me that time, but it soon will magically disappear or get a slit in it;-) ;-)
M
PS. Did you notice my new header pic? I'll change it to the Santa pic soon:) Plus I have lots more I'm going to change it to, so keep a look out;-)