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Monday, November 30, 2009

Ayla Saying "Uh oh" and Standing Up Now:)



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!!!
M
PS. We got our Christmas pics taken, so be watching for a few new blog header pics this month:)

Saturday, November 21, 2009

VX-770 and VX-809=Potential CURE for Cystic Fibrosis!!!


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:)

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!!!!

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!!
M

Wednesday, November 18, 2009

Encouraging Email from Robert Beall/Great Strides for 2010


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;)....


Dear Friend,

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:



  1. Clinical testing of breakthrough new therapies designed to treat the basic defect in CF


  2. Development of therapies aimed at treating the symptoms of CF, including new antibiotics and anti-inflammatory drugs


  3. 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.

Sincerely,

Robert J. Beall, Ph.D.

President and CEO

Cystic Fibrosis Foundation

800-FIGHT-CF

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???? ;-)

Thanks,

M

PS. If anybody has any fundraising ideas for me, please let me know!!

Tuesday, November 17, 2009

Ayla is 9 1/2 months/Halloween Pics:)

Guess what Ayla is doing now??? (Steph, don't let Tyler watch this video...Ayla had to make sure his Christmas present works;-) LOL

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!
M

Sunday, November 8, 2009

"Dare to Dream" song by Dr. Francis S. Collins


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!"

M

Wednesday, November 4, 2009

R.I.P. Lauren...You will truly be missed;(


Unfortunately I have a bad update from my last post to report tonight...Lauren, a 29 year old with Cystic Fibrosis, has passed away to be with the Lord yesterday. This saddens my heart, b/c for the past 2 years I have looked up to her for all that she did for the CF community. She shared all kinds of valuable information for us CF parents and for CFers all over the world. She will truly be missed. It won't be the same without her....without going to her for great advice from her past experiences....or reading her beautifully written words(she was a GREAT writer). I never understood really why she was against a double lung transplant even with all her knowledge about CF and even though she would explain it on her blog. She had decided near the end that she wanted more time with her husband Brad and to go ahead with a double lung transplant. I was so thankful and was praying that she would get on the list and get her new lungs in time, but unfortunately God had other plans. I will always admire her for all that she did and all the she left behind on YouTube and on her blogs for all CFers to read and learn from her about CF. All I have to say about Lauren is...."What an AMAZING CF woman!!" She will truly be missed. I just always thought that she would always be there if I ever had any questions, and now.......;-( This is a reminder as to how serious this disease is and how important it is to find a CURE TODAY!!! Praying for Brad and Lauren's family.

Check this link out to see Lauren and Brad, 2 very talented, loving people...
http://www.cfvoice.com/info/caregivers/videos/sickness-and-health.jsp

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.
Thank you,
M

Monday, November 2, 2009

Lauren is not doing well...

Please pray for Lauren, a CFer in her late twenties who is not doing well at all. A few months ago she was getting better, but lately has been getting worse and worse. Her husband said the prognosis isn't good and the doctors are meeting with the family today. Please pray for her. Pray for the doctors and families. Click here to check out her blog where her husband has been giving updates on her condition.

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!!!

Thanks,
M

Sunday, November 1, 2009

H1N1 Shot/Ayla's Cough Question

On Friday we got a call from our pediatricians office saying that they got a batch of the H1N1 flu shot in and that we were one of the first ones on the list b/c Lil' Chris has Cystic Fibrosis and is at high risk. We must have been one of the first people they called, b/c they said we could pick whatever time we wanted to come in on Saturday. So we opted to go at 10am. Boy was it busy in there!!! Of course Lil' Chris and my husband stayed out in the hallway away from all the germs while I waited with Ayla in the waiting room. I was expecting a long wait b/c they were so busy, but it wasn't long at all! Once we got in the room, she asked us some questions and then was ready to give them the H1N1 shots and be done, but I asked if we could do both the seasonal and H1N1 so we wouldn't have to come back. I explained to her that we take a risk every time we come to the doctors with Lil' Chris. She understood and went and asked our doctor to see if it was okay. She came back a few minutes later and wam bam, they both got one shot in each leg and we were out of there! I was so surprised at to how quick it was!! I sure was glad though:)

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:)
M