Thursday, December 31, 2009
Wednesday, December 30, 2009
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
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,
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
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.
PS. I'll update again tomorrow.
Wednesday, December 23, 2009
Tuesday, December 22, 2009
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:)
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
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 firstname.lastname@example.org 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 email@example.com and then bcc the CFF at firstname.lastname@example.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...
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
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;-)
PS. Do you like the new header pic??? More to come this month;-)
Monday, December 7, 2009
Sunday, December 6, 2009
Monday, November 30, 2009
On Thanksgiving, I was feeding Ayla and tried to get her to say "Uh oh" and she said it right away practically!! I couldn't believe it!! So now she can say "Uh oh", "Dadda", and "Momma"!!! YEA!!!
I just had to add a few pics of my handsome lil' man imitating his Daddy by putting his hands in his pockets...too cute:)
We had the best Thanksgiving with my sister-in-law, her hubby, and their 3 kiddos. We celebrated our Christmas too, since we won't see each other at that time. The kids had a blast opening their gifts and playing with them all weekend:) Thanks Steph and Greg and kids for a great Thanksgiving!!!
Here are some pics of our Thanksgiving Christmas;) and one of Ayla pulling herself up to a standing position!! This morning when my hubby went to get her out of her crib, he said she was standing up holding on!! When I went to get her from her nap, there she was...STANDING!! Wow! She catches on pretty quick:) Wasn't it like last week when she started sitting up by herself and crawling?!? She started crawling only 5 days ago, to be exact;-) Before we know it, she is going to be walking!!
Make sure you watch Ayla in these video's...you can see her eye up the presents and her brothers toys;) Oh yeah, and you can see the first video of her CRAWLING!!! YEA!! Hey Tyler...Ayla says "Thank you for her first Christmas present EVER!!" :)
Lil' Chris caught a lil' bug the night of Thanksgiving and was up in the middle of the night with a lil' fever and threw up twice. By Saturday he was fine though. Right now he just has a lil' stuffy nose, but it isn't running. Pray nothing worse comes of it!
I hope everyone had a GREAT Thanksgiving like us!!!
PS. We got our Christmas pics taken, so be watching for a few new blog header pics this month:)
Saturday, November 21, 2009
He went over lots of good info, mainly including 2 drugs that are soon to be approved by the FDA and available to patients. These 2 drugs take care of the root of the problem in people with Cystic Fibrosis. They are called the Potentiator VX-770 and the Corrector VX-809. These drugs have the potential to add 10-15 years of life to patients with CF!!!!
Last Thursday 11/12/09, Chris and I went to a Cystic Fibrosis Volunteer Appreciation Reception. The special guest speaker was Robert Beall, the President and CEO of the Cystic Fibrosis Foundation! Exciting, right?!?! I know! It was such an honor to meet him and shake his hand. It is thanks to his dedication and the doctors and scientist hard work that my son's life expectancy is 37 instead of 5!! After the reception, I went up to him and asked to get a picture with him, and then we talked for a minute and I told him about my blog and how I talk to CFers all over the world! He seemed impressed for me only having a 2 year old with CF and doing so much already:)
The Potentiator VX-770 is in Phase 3, the Definitive Trial, and the Corrector VX-809 is in Phase 2, the Human Safety and Efficacy Trial. Drugs have to go through 3 phases which costs millions of dollars to do. Thanks to the money we raise through Great Strides, the Cystic Fibrosis Foundation can fund these drugs. Lil' Chris wouldn't be as healthy as he is today if it weren't for the CFF. Currently there are 30 drugs in the pipeline. Only 2 up until today have been approved, and I personally know many CFers that use TOBI. There are 13 drugs to be approved by the FDA within the next 3 years!!! Good news!! 4 of those drugs are in the last stage, phase 3. Great news!!
What are so special about the VX-770 and VX-809 drugs?? They could stop the disease at the cellular level. The basic defect in those with CF is that the chloride can't get out of the cell, CFTR. In a normal cell, proteins are transported to the outside of the cell, allowing chloride to flow in and out of the cell(see pic above). In a CF cell, nonworking proteins are transported to the outside of the cell and don't allow chloride to flow. Instead a thick, sticky mucus is formed. Robert Beall said, "Can't we just find a pill that will open up these chloride channels?" Well, the VX- 770 and the VX-809 do!!!
The VX-770 increases the opening(gating) of the CFTR channels with just a pill!! Right now is it working for those with G551D mutations, but Beall believes that in time it can work for other mutations as well. In a CF cell successfully treated with VX-770, the drug binds to the nonworking proteins on the outside of the cell, allowing chloride to flow and prevent mucus from forming. The VX-770 increased CFTR activity in Preclinical studies, and after a 2 week clinical trial, they were at normal levels!! Amazing! Their lung function improved 12%!! They are doing this study on children as young as 6 years of age and up! I didn't know they did these kinds of studies on children so young!
The VX-809 increases the number and function of CFTR channels. It is for those with double delta F508 mutations, which is what Lil' Chris has. The VX-809 helps CFTR to get to the membrane and helps get chloride through. These clinical trials are for those who are 18 and older. This one is very similar to the VX-770. Instead of increasing the opening so the chloride can flow, it makes a NEW opening to let the chloride flow. They do the same thing, but just in 2 different ways.
Robert Beall told us that "CF patients loose 2-3% of lung function EVERY YEAR. There is an 80% chance of drugs working when in phase 3. These drugs could add decades to CF patients lives! This is the most exciting time in our history, and we are closer than ever to treating the basic defect in CF!"
We need to pray, pray, pray that we raise enough money to keep these drugs moving forward to find the CURE for Cystic Fibrosis. These drugs could potentially be the CURE for Lil' Chris and other young CFers. It may not be the cure for older CFers, b/c it can't undo any lung damage that has already happened. But it can help it from getting any worse, which could still increase their life expectancy. Also, a lot less pills and treatments which is a HUGE PLUS!!! This all equals to a better quality of life:)
Other exciting news that he shared with us, is that they are teaming up with Warner's Brothers and CVS. CVS will promote movies that benefit Cystic Fibrosis! This will be huge awareness for the public! The more awareness there is about CF, the faster we will get to a CURE:)
Click here to read more about these drugs and to read about a fellow blogger I know, Somer Love, who is 30 with CF. Click here to read her blog.
Click here and donate today and do your part to help these drugs move a lil' faster to becoming Lil' Chris' CURE!
Click here to join a CF Panel if you are a CFer or a caregiver of a CFer and want to help find a cure for CF and get PAID to do it! Don't forget to mention my name;) Thank you to Traci Liberto for being the last one to mention my name:) A few days ago they called to update my info and I got $25! YEA!!! So far, I have earned $475 for basically doing nothing!! It's easy money to raise for Great Strides for a CURE;-)
With your help, CF will stand for CURE FOUND!!
Wednesday, November 18, 2009
Here is another encouraging email I got from the President and CEO of the Cystic Fibrosis Foundation(we were fortunate enough to meet him last week at our Volunteer Appreciation meeting. I will blog about what I learned from him soon;)....
Thank you for your generous past support of the Cystic Fibrosis Foundation. With your help, we are making remarkable strides toward a cure.
Despite the economic uncertainty of the past 12 months, 2009 was a banner year in terms of scientific progress for people with CF.
We achieved important advancements in:
- Clinical testing of breakthrough new therapies designed to treat the basic defect in CF
- Development of therapies aimed at treating the symptoms of CF, including new antibiotics and anti-inflammatory drugs
- Quality improvement at our care centers nationwide, through the Foundation’s award-winning quality improvement program.
Thanks to your help, the median age of survival has risen to more than 37 years, more than double what it was 25 years ago.
Our progress has been remarkable, but we still lose precious lives to this disease every day. With so much promising research on the horizon, we need your support now -- more than ever before.
Your tax-deductible donation will fund the life-saving research that is adding tomorrows every day.
Thank you for all that you do.
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
Thank you all who donated the past 2 years in honor of Lil' Chris to help find a CURE for CF! As you can see, your money is being put to good use, but a CURE has not been found yet (although they did get a lot closer this past year;). I just found out that our walk for a CURE for CF for 2010 is going to be on May 1st at 9am. Please click here to sign up to walk with us, or to donate to FIND A CURE FOR CYSTIC FIBROSIS for Lil' Chris and ALL people with CF! We raised $4,440 in 2009, so my team goal for 2010 is $5,000 and my own personal goal is $4,000. Now who is going to be my first donor for 2010???? ;-)
PS. If anybody has any fundraising ideas for me, please let me know!!
Tuesday, November 17, 2009
Ayla is now going from lay down position to sit up position all by herself!! I went to go get her out of her crib the other day and there she was....sitting up(we lowered her crib since then;)!! What a big girl she is becoming! Now a day or 2 later and she is sitting up all the time while playing on the floor! She catches on quick;) Tonight she was even trying to pull herself up on one of Lil' Chris' big toys! It won't be long now before she is standing ... and then walking!! YIKES!!! She still isn't crawling on all 4's, she rolls to where she wants to go and then sits up...too funny:) She sure is getting into everything though!! Tonight I caught her playing under the kitchen table trying to pull down my laptop off the table!! It was so cute I had to take some pics;) Now that she is getting into stuff that she shouldn't be, I have to tell her "no" more and have to move her away from it. It's funny, b/c Lil' Chris is copying me:) If he sees her doing something wrong, he says "No Ayla, no!" and then sometimes he drags her away. You can see in the pics that he is dragging her out from under the table;-) Too funny!!
So I can't believe my baby girl in 9 1/2 months already!! Her personality is really starting to show:) (BTW so are her 4 lil' teeth;-) She is definitely different from her big brother! She knows what she wants and goes after it! She lets you know if she doesn't want something...like her bottle! When she is done drinking, she pushes it away and WILL NOT let you put it back in her mouth!! And if she doesn't want to go down for a nap...she definitely lets you know! All that said, she is a pretty good kiddo though:) She loves to get hugs and kisses, loves to play with all the toys(including her bothers potty...gross;), loves to sleep from 7pm-7 or 8am, loves her babysitters, loves to shake her head no when you say "No" to her, loves to suck on her pointer finger when she is sleepy, and could play in her crib for hours just like her big brother;-) Oh yeah, and she LOVES to EAT!!! She has not pushed away any food that I have tried to give her, other than her bottle of course;-) She loves food way more than her bottle! So opposite from Lil' Chris at this age. I wish he would have eaten solid foods at this age, what am I saying...I wish he would eat them NOW! He is such a picky eater compared to his lil' sister. Maybe watching her eat will help him to eat more...keep your fingers crossed;-0
Ayla loves sippy cups...especially her brothers, which she seems to always find;-) We have to take Ayla out of the living room when Lil' Chris is doing his Vest, b/c we usually give him a snack and a sippy cup. If she's in there, she gravitates to the food very quickly and eats it all! She'll even grab his cup and drink his yogurt! Now you know why we made her Piglet for Halloween;-) LOL Speaking of Halloween....here are the Halloween pics...
All in all, Ayla is a very healthy, happy lil' baby girl and we couldn't be happier that she is in our lives!! I love to see her beautiful smile everyday:) Her and Lil' Chris just brighten my world! I couldn't imagine life without them!
Sunday, November 8, 2009
Check out this video where the director of the National Institutes of Health, Francis S. Collins, M.D., Ph.D. performs his song "Dare to Dream" at the CF Foundation's North American Cystic Fibrosis Conference (NACFC) in Minneapolis, MN on 10/15/2009.
More than 3,000 leading scientists and health care workers from around the world have gathered to talk about the latest treatment and research into the chronic lung disease.
A pioneer in Cystic Fibrosis research, Dr. Francis Collins, opened the conference. Collins was part of the team that 20 years ago, discovered the gene that causes CF.
Today, he is better known as the director of the National Institutes of Health - the biomedical research arm of the federal government.
President Obama called him "one of the top scientists in the world," when he nominated Collins to the post in June.
Dr. Collins talked with All Things Considered about cystic fibrosis and some of his other priorities in his new post at NIH.
Isn't is great to see or hear that these doctors "GET IT!"
Wednesday, November 4, 2009
Check this link out to see Lauren and Brad, 2 very talented, loving people...
Unfortunately I have more bad news...2 more people with Cystic Fibrosis have passed away and 2 more are on a vent due to the H1N1 Flu(Lauren did not have the H1N1 flu). Please pray for them and their families along with Lauren's family.
Monday, November 2, 2009
I first came to her blog when I first started blogging. She has a few blogs and always gave such good info on how to care for CF. I admired her for all that she did to help the CF world. I was just watching one of her You Tube videos again the other day on A Day in the Life of CF(see it below). I really learned a lot from her when Lil' Chris was first diagnosed. She was one CFer who didn't hold anything back and it kinda freaked me out a little bit at first. Lil' Chris was so small and to see what she was going thru or had gone thru was painful to watch, knowing that my lil' boy might have to go thru that someday. I didn't follow her regularly for that reason, but checked in on her now and then to see how she was doing. To hear how poorly she is doing now just breaks my heart. Please pray that she gets on the transplant list and gets her new lungs soon!!!
Sunday, November 1, 2009
We didn't get to see the doctor, so I didn't get to ask about Ayla. She has been coughing the last couple of days. I almost feel like a first time mom with her sometimes, b/c I am so used to raising a kid with Cystic Fibrosis who can't take any cold or cough medicines. Does anybody know what I can do and can't do for a 9 month old's cough???
This morning was a rough morning for Lil' Chris. He woke up on the wrong side of the bed I guess. He screamed and cried through 27 minutes of his Vest treatment this morning and then I changed the show that he was watching and presto the tears stopped! Now why didn't he just tell me he wanted to watch the Fresh Beat Band??? Oh well. The weird thing is that afterwards he asked to go to bed.....I said, "It's only 9:30am, are you sure??" He said yes and I put him down and haven't heard a word. I guess all that crying wore him out...or maybe it was from the shot yesterday????? IDK Hopefully he wakes up in a better mood.
We had a BLAST trick or treating on Friday....pics and video coming soon:)
Friday, October 30, 2009
I just put a link to the Kalahari video post up top of this blog, b/c he asks to see it EVERYDAY and I got tired of searching for it each time. Now it will be nice and easy to get to:)
Ronnie and Christina had a great post the other day on their blogs about CPT(Chest Physical Therapy: what we used to do to Lil' Chris before we got the Vest). I would show you a video of us doing CPT to Lil' Chris when he was a baby, but I don't think I ever took any, b/c it was too depressing. I didn't want that memory...it was a hard time for my husband and I to have to pound on our lil' baby like that. I thank God everyday that we were fortunate enough to get the Vest for Lil' Chris. It has made all of our lives soooooo much easier! Click here to see his last Vest video, and click here to see Ronnie's post about CPT and he also included Christina's post:) In Christina's video...I think it is around 13 minutes in that it shows her doing CPT on her son(what we used to do). Just watching it brought back all the memories of my arm killing me!!!
Update on Lil' Chris' cold....it is all gone, even his cough thankfully.....but unfortunately Ayla's nose started running yesterday:( I'll keep you posted.
Good news....we raised $200 for our first month of doing Jeans 4 Genes at work!! YEA!!! 3 more months to go, if we keep this pace up, that means we will raise $800 for a CURE for CF!!! Praise God!
We can't wait for Nov 12th, we are going to the 2nd Annual Volunteer Appreciation Reception which honor's our chapter's outstanding volunteer leaders with Robert J. Beall, Ph.D. as the special guest. He is the President & Chief Executive Officer of the Cystic Fibrosis Foundation. We are going to hear about the latest scientific advancements and progress we're making in the fight against Cystic Fibrosis. I'll share any good info I get;-)
Have a GREAT day!
Monday, October 26, 2009
Last night we carved a lil' pumpkin with Lil' Chris for the first time! He wasn't too sure about it at first, but then he got the hang of it and it wasn't as gross to him anymore....well, he still thought it was gross...he refused to touch the insides with his hands, but he still had fun:) Too funny:)
Hope you enjoyed the montage,
PS. I didn't forget about the birthday/dedications pics...they are coming soon;-)
Saturday, October 24, 2009
She is getting into all her big brothers toys now and she is getting UNDER some of them...the slide;-)
We've raised $130 in the first 3 weeks of doing Jeans 4 Genes at work!! Everybody at work has always been so supportive of Lil' Chris. We greatly appreciate everything!! 14 more weeks to go!!
Lil' Chris' cold is getting much better!! His nose isn't running nearly as much as it was, thank God! He was quit cranky today, but who wouldn't be after not getting much sleep for 2 days. Last night he did sleep through the whole night though...Mommy was VERY grateful;-) His cough has gotten a little bit worse unfortunately:( Needless to say...he is doing more Vest treatments to help break up that mucus in his lungs. Hopefully he won't need an antibiotic, but I have a feeling he might need one if it doesn't clear up in a couple of days:(
I'll keep you posted. Please pray that the rest of us don't get sick too.
BTW.........remember that diet blog that I started back in April??? Welllllllll........I've lost 35 pounds!!!!! YEA!!!! I'll post another "after" pic soon;-)
Friday, October 23, 2009
He hasn't been coughing too much, only when he does his Vest...which he usually never does. That's a good sign...the Vest is working! He's just not sure what to do when he coughs it up though. He says to us "Spit it out?" but then he won't spit it out. It's good that he knows he is supposed to though...he'll get there eventually. He's still pretty young to be spitting out his mucus, I think. Little does he know that he will have to spit his mucus out daily for the rest of his life. Or...maybe he DOES know, that's why he won't do it now, b/c then I'll want him to do it ALL the time;-) He's just too smart for us;-) lol
We have been keeping Ayla in separate rooms from him so that she won't catch it. Chris and I have been sanitizing every time we wipe his nose, or even touch him or something that he was touching. Hopefully we don't all get sick too.
Please pray that it is just a cold and that it doesn't turn into something worse like pneumonia, the flu, or even worse...the H1N1 flu.
Thank you for your prayers,
Monday, October 19, 2009
A new CF doctor is coming to our clinic now. She has over 15 years of CF clinical care and CF research experience. I'm not sure if she is getting all of Dr. K's patients or not. I guess we'll have to wait and see what they say when we go to clinic next month. I'll make sure to get a pic of Lil' Chris and Dr. K before he leaves. The letter says he will be moving in mid 2010, but you never know, it might be sooner. I just hope that whatever doctor Lil' Chris gets does as good a job as Dr. K did. Lil' Chris has done amazingly well for his first 2 1/2 years. It's all thanks to Dr. K!!! He will truly be missed;(
Sunday, October 18, 2009
For my family and friends...if you would like to help out and do Jeans 4 Genes at your work for Lil' Chris, please comment on this post or email me and I can set you up with flyers and stickers:) I would love to get more help in raising money to help find a CURE!!
We need that CURE ASAP!!!! 2 of my fellow CF mom bloggers have been in the hospital recently with their little ones. Please pray for Ashley as she is out of the hospital now and has lots of treatments, and pray for Reilly who hopefully will get out of the hospital Monday but will also have many at home treatments. These 2 little girls have amazed me with all that they have gone thru and yet always have a smile for the camera. I can't imagine Lil' Chris having to stay in the hospital for 4, 5, or 6 days! I keep thinking about it, but my husband tells me not to. He says we will deal with it when the time comes. I pray it never comes, but I know it is inevitable with this horrible disease. . . unless we find a CURE! So help me out everyone! Ask your boss today if your work would be able to do Jeans 4 Genes. It can be once a week or once a month! Every penny helps! If your work is already casual or aren't allowed to wear jeans, then click here for some other fun fundraising ideas:)
Saturday, October 17, 2009
Lil' Chris has been peeing standing up the last couple of weeks!!! YEA!!! He is doing a GREAT job for his age, I think:) Lately he has been having accidents only when he naps, is doing his Vest, or when he is eating in his high chair. Not sure why??? We are working on it though. He doesn't do it every time, just sometimes. He usually never has any accidents while he is playing or watching TV. The other day he woke up from his nap dry!! That's a good sign!! The only problem is that he is only learning when he takes a nap when I am home. My hubby still puts him in a pull-up and we have the sitter put him in a pull-up so she doesn't have to clean up the mess. He'll get there eventually. I gotta say...it has been sooooo nice saving money on all those diapers!! Having 2 kids in diapers was rough! I can't believe they are like $42 a box now!! Crazy!
Lil' Chris can also catch a ball now!! Daddy did a great job teaching him. He caught 8 in a row for me the other day! What a kid:)
He also started bossing around Ayla...I didn't think this started so young!! LOL If she grabs a toy of his or something that she is not allowed to have, he says "No Ayla!" and takes it from her. He is so cute:) He is such a good big brother...he gives her toys that she can play with and he helps mommy out by taking the small toys away from her so she won't choke. The only problem now is that he keeps giving his food to her. He sees us giving her food, so he thinks he can too:)
Guess what word Lil' Chris picked up..."crap"...I don't know where he got that from;0 Ok, it was me;( It's cute hearing him say it every time he drops something. LOL
I got him to finally eat some Mac n Cheese the other day!! I tried it again and he wouldn't eat it:( I'll keep trying. We had a dietitian come to our house to help us to get him to eat more foods. Hopefully it helps. He was drinking the Resource Breeze Orange juice(250 calories), but now he won't touch them. Weird. Sometimes he will drink a Scandishake(600 calories). We are still working on getting him used to them so he can get extra calories.
Ayla can now clap her hands! YEA!! It's so cute. I tried to get it on camera, but no luck. Someday I'll get it:) She is now eating more foods. She loves pretty much everything!! Whatever Lil' Chris doesn't finish eating, we give it to her. Sometimes this trick will make him want to eat more;-) Smart huh?! lol
I finally dug out the bouncy seat for Ayla. She LOVED it! She isn't bouncing yet, but she loves to swing in it! Lil' Chris LOVES to push her;-)
Ayla is rolling around more and more everyday! One minute she's here, the next minute she's way over there!! Too funny:)
Guess what??? Ayla has another tooth coming through! This one is the top front left tooth. The right one is about to come through any day now:) I can't wait, b/c I love it when babies only have the front 4 teeth;-) lol
Enjoy the video...
PS. Coming soon...Birthday and Dedication pics;-)
Sunday, October 11, 2009
Click here to see Day 1.
I hope you enjoyed them. Coming soon...new things the kiddos are doing now. Can anyone guess what they are???
Saturday, October 10, 2009
Here the individuals of my lil' Tigger and Piglet;-)......
Tuesday, October 6, 2009
THANK YOU EVERYONE WHO DONATED IN HONOR OF LIL' CHRIS! WE GREATLY APPRECIATE EVERY CENT!! There are over 30 drugs in the pipeline right now and 2 are really close to being released. Hopefully one of these will be the CURE!!
Here is an email about the progress of research for a CURE...
Dear Lil' Chris' Mom,
Every year, we commit millions of dollars to CF research and the search for a cure. With your support, CF Foundation-sponsored scientists continue to break new ground.
Our biotech collaborator PTC Pharmaceuticals just announced their potential CF drug ataluren, which has shown promising results in earlier clinical trials, has moved into Phase 3 testing.
CF patients who took ataluren (formerly PTC 124) in Phase 2 clinical trials showed improved lung function and decreased cough. The results suggest the drug improves the function of the faulty CFTR protein in people with CF – the underlying cause of the disease. Phase 3 trials will further evaluate the effectiveness and long-term safety of this potential therapy.
Your contributions allow us to invest in high impact research that is bringing us closer to a cure.
If you have CF, you can help by participating in the clinical trial. Visit the Foundation’s Web site to learn about this study and find out how to get involved.
Thank you for your commitment to the fight against CF. Together, we are making a difference!
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
Thanks again everyone for donating. As you can see, your money is being put to good use. One other way that you can help that doesn't cost anything but a few minutes of your time is.....to become a "CF Advocate"! Click here and then click "Sign Up" to receive the CF advocacy Newsletter and Alerts, and then click on "Take Action Now". Then under US Congress, click on: Action for October: Ask your Senator to support expended access to clinical trials, fill in the blanks and hit SEND.Your Senators and House members for your state will receive your email and will know that they need your support and that you need them to TAKE ACTION NOW in Washington. Please feel free to add a little story about Lil' Chris, but you don't have to. The words are already there for you. You just have to send it to get the awareness out there to those who can make a difference in the CF community. **Please try to never write or say CF~ always use Cystic Fibrosis as some may not be aware of what CF is.**
I have recently become a Network Advocate for CF and I am LOVING the difference I am making with my emails to our Senators. I got a GREAT response the other day from Senator Sherrod Brown saying that he is going to be a co-sponsor...
Thank you for getting in touch with me about access to clinical trials.
I agree that individuals with rare diseases should not be denied eligibility for the Supplemental Security (SSI) program based on the stipend they receive for participating in a clinical trial. Our nation should be encouraging greater participation in these trials, not penalizing those who participate.
Senator Wyden has introduced legislation to exclude rare disease clinical trial stipends from SSI income calculations. His bill, the Improving Access to Clinical Trials Act (S. 1674), was introduced in the Senate on September 15, 2009 and referred to the Committee on Finance. I am proud to be a co-sponsor of this important legislation.
Thanks again for getting in touch with me on this issue.
United States Senator
You can make a difference too! Become a CF advocate today!!
Friday, October 2, 2009
The second montage is of Ramseyer Farm. It's our lil' tradition to go there on Chris' birthday every year. It's fun...Lil' Chris had a BLAST!! Somehow the camera got switched to black and white half way thru...sorry about that;-) lol
Guess what Lil' Chris can do now??? Ayla is doing something new too. Can you guess what it is???
Thursday, October 1, 2009
Ronny had a GREAT post the other day on his blog. When doesn't he have a great post though;-) The post was actually from his girlfriend, Mandi. Click here to get the whole post on his blog.
These are some very interesting things that I didn't know(except about the smoke;) and that I feel ALL CF families should know, especially us who have young CFers who can't tell us when their lungs hurt. Here is the post from his blog....
Caution: Harmful Fumes Ahead (for CFers)
On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.
I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:
-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.
-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.
-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.
-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.
These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.
If you have any others, please leave them here.
P.S. If you haven't made it over to www.naturemade.com yet to see Ronnie's story, check it out. I'm super proud of him :)
Click here for another great post by Ronny about being a good CF mom:)
Here is one more great post by Ronny about making the decision to have more children if both parents are CF carriers. Be sure to read all the different comments too;-)
I think that's enough for now...LOL ;-) Let me know if you have any questions,
PS. Lately on Young & the Restless(yes, I'm addicted to a soap opera;) they have been talking a lot about organ donation. I'm so glad that they are, b/c it is SOOOOOO important for CFers. Most CFers will need a double lung transplant when they get older. Please, Please, Please become an organ donor TODAY. Don't wait another minute! You could not only save 1 life, but you could save 7 lives!! Isn't that a great way to be remembered? I hold comfort in knowing that someday I may save a life or two or 7. Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death.
Ok, now I'm done...for real this time;-)
Wednesday, September 30, 2009
We had soooooo much fun at Kalahari! We had a waterproof camera, so we took a LOT of pics when we were there. This montage was originally 28 minutes long!! Don't worry...I cut it back to about 10 minutes;) Still long, I know, but they are just too cute to cut back anymore;-) lol
Click here to see the room we stayed in...it was the BEST room we have EVER stayed in!! It had 2 bedrooms and 2 full bathrooms! Our room had a king size bed and had sliding glass doors that went out to our balcony. The tub in our room had jets in it...so cool! The kids room had 2 queen size beds, I think. There was a living room with a fireplace and sliding glass doors to the balcony. It even had a nice convenient high faucet sink so we could wash Ayla's bottles;-)
Can't wait to go back! Who's comin with us???? lol
PS. Thanks everyone for the 14,000 blog hits;-)
Monday, September 28, 2009
Wednesday, September 23, 2009
If you are in the area, please stop by this Saturday from 8am-2pm:)
PS. Please pray that the rain will hold off too.
Tuesday, September 22, 2009
Thank you to those who took my poll on the upper right hand side of my blog here. I greatly appreciate it. It's nice to see what other CF families are doing about such an important issue for CFers. So far it looks like everyone who took the poll says that everyone in the CF household will be getting the H1N1 flu vaccine. Sounds good to me! I know both Lil' Chris and Ayla are for sure getting both vaccines. I can't get the seasonal flu shot, b/c I am allergic to eggs. Apparently if you are allergic to eggs, they recommend you don't get it.
Monday, September 21, 2009
We had soooooo much fun!! We did the indoor water park first, and then went outside to the little petting zoo, and then off to the arcade to win tickets for some cool prizes;-)
We had the BEST room EVER!! It was the African Queen Suite...and it sure was sweet;-) LOL
Day 2 coming soon:)
Sunday, September 20, 2009
He is still having accidents at nap time and we haven't even tried night time yet. Lately he has been having accidents while doing his Vest. Not sure why, b/c he used to ask to go potty even during his vest treatment, but ever since he had that last fever he has been having accidents during vest time. Weird. We're working on it though.
He now is going more on the big potty too! Maybe we can do away with his little potty soon:) Hopefully, for Mommy and Daddy's sake;-) LOL
His favorite part about going to the potty used to be flushing the toilet, but now he LOVES to wash his hands:) We were using a little step stool where he could barely reach the water, but now my hubby put a little step ladder up to the sink, so now he can reach the water perfectly. He LOVES IT! Sometimes I think he makes himself go on the potty just so he can wash his hands! The whole time he pees he says "Wash hands, wash hands?" Too funny:) Anything that works, right? lol
Tonight he got his hair cut for the second time! So exciting! I didn't get any pics, b/c I was getting my hair cut at the same time. I did however get some "after" pics though;-)
Also, tonight was the first time we put both Lil' Chris AND Ayla in the tub together for a bath! They loved it! It only took Lil' Chris 5 seconds to dump water on her head;-) Good thing she likes the water:) LOL
PS. The Kalahari pics are coming soon, I promise;-)
Friday, September 18, 2009
This past weekend we had a BLAST at the Kalahari Resorts for my husbands birthday and as soon as we got home, Lil' Chris wasn't himself. He woke up in the middle of the night with a fever of 101.8. He had a fever all day on Tues and then Wed morning, but after his nap he was all better and back to his normal self! Thank God!
We think the fever was from the Augmentin(antibiotic for his cough). He got a fever the last time he was on it too. It seems to happen after the first couple of days of taking it. The clinic wanted us to still give it to him. We stopped it for a day, b/c he wasn't eating anything and we didn't want him to take it on an empty stomach. Now he is back to taking it and hopefully it kicks his cough out for good!
Lil' Chris is doing great with his potty training! He asks to go pee and poo on the potty! He even asked to go potty when we were at the water park this weekend! I couldn't believe it!! There he was out in the water with his swim diaper on having fun and then all of a sudden he comes running back to say he has to go pee pee on the potty! He asked a few times while we were at the water park and he was going on the big potty in our hotel room too! I couldn't be any prouder! Now if only we could get night time potty training going;-) That's more our fault for not wanting to get up in the middle of the night;-( We're so bad, but we both work full time and it's hard to get up in the middle of the night. I know, I know...we just have to do it one of these days. Maybe once he gets nap time potty trained 100% then we'll try night time;-)
Here is the video of him playing at the water park and then running up and saying "Pee Pee on the Potty?"
More pics to come:)
PS. If you are a CFer of a CF caretaker, check out the poll on the right side of my blog at the top.