"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

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

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

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

FOX 8 Kalahari Contest/Update/CPT

Guess what??? I just submitted an entry to a Kalahari Contest that FOX 8 News is doing!! I really hope we win!! It is for 2 days at Kalahari Resorts Sandusky....we all know Lil' Chris LOVES Kalahari, even though he has only been there once;) If you would like to submit too, go to fox8.com. It is only until 11/1 so hurry!! There are going to be 15 winners!! I think it's awesome that they are doing this and I hope that some really deserving people win it. Now if only they had a Disney Contest....;-) I'm still determined to take Lil' Chris to Disney no matter what it takes! Some Christmas ideas....Disney bucks or just money to go to Disney:) Thanks.

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!
M

Cold Update/Pumpkin Carving Montage

Lil' Chris' cold is much better! Thank you so much for all your prayers. His nose barely ran yesterday or today and he wasn't coughing as much either. I guess doing the Vest 3 times a day really helped!! Hopefully the cough stays away for good! Nobody else caught his cold, so that's good:) All that sanitizing and keeping the kids separated really helped!

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:)

Photo and video editing at www.OneTrueMedia.com

Hope you enjoyed the montage,

M

PS. I didn't forget about the birthday/dedications pics...they are coming soon;-)

Ayla has 2 more teeth!!

Ayla now has 4 teeth...well, the 2 on top are still coming in but are sooooo cute;)

She is getting into all her big brothers toys now and she is getting UNDER some of them...the slide;-)

Make photo slide shows at www.OneTrueMedia.com

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.
Thanks,
M
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;-)

Lil' Chris has a cold;-(

Lil' Chris has a cold unfortunately:( It started a couple of days ago. Not sure where he got it from. We took him out shopping a couple of times, so maybe he picked something up while we were out. We make sure to sanitize all the time, but with his low immune system, he catches things so easily. The last 2 nights he has not slept much:( Hopefully he gets a good nights sleep tonight.

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,
M