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Friday, February 25, 2011

CF Update / MORE SNOW!!!



Thank you everyone for the birthday wishes yesterday:) Special thanks to my hubby for the birthday post and for taking me to Castaway Bay Indoor Waterpark;-) We had a BLAST!! It was our first time at this indoor waterpark. It is part of Cedar Point Amusement Park.

Our CF doctor called today to see how Lil' Chris' cough is and she said to wait and see for now since he isn't coughing all the time and it isn't as bad as it was before we started the Bactrim. She said to call back if it gets worse before out CF clinic appt in a couple of weeks. Please pray it goes away on it's own. It wasn't quit the response I wanted, so we'll see how this plays out.

Today we got MORE SNOW!!!! Ughhhhh!!! I really hope this is the last storm!!! I'm sick of driving in it, esp after this past Monday! Well, I gotta go b/c I'm going to have try to snow plow for the first time since Chris is working;( This should be interesting, it looks like 6-8 inches!

Have a safe and great day!

M

Thursday, February 24, 2011

HAPPY BIRTHDAY MICHELLE!

Hope you have a great birthday. We love you!


Wednesday, February 23, 2011

CF Update / Positive Results for VX-770 Study!

Lil' Chris finished his Bactrim last night for his cough, but of course....he is STILL coughing!!! Arggggg!! So I called the CF clinic today and left a message. This is the first time this has happened, so I'm curious as to what they are going to do...maybe refill the Bactrim, or wait a little to see how he does, or wait and then put him on something different??? IDK. Do they even HAVE to wait?? I guess I'll find out when they call me back. Hopefully they call today!! His cough isn't super bad or all the time, but when he does cough...it doesn't sound the greatest. It just makes you sink and wonder what's going on in those lungs of his. I just pray it's not "the bad bacteria"...Pseudomonas.

Oh, and he also had another bad night on the 19th where he was throwing up again. We don't think he had any soy protein, so not sure why he keeps doing this. That makes 3 times in the last couple months I think. I wonder if we need to adjust his enzyme intake. I'll be asking the dr on 3/16 when we go for clinic visit. The pic above is him in between throwing up. Notice the trash can right next to him?? lol! If it's right next to him, he never gets it on the floor. He's pretty good about knowing when it's coming and when to get to the trash can. He's had enough practice, that's for sure. Poor kid.

Our snow FINALLY almost all melted a few days ago when we had like 60 degree weather, but that didn't last long!! We got hit again on Monday! Of course I had to drive home from work at the worst time!! But...I lived to tell about thankfully!! It was about 4-5 inches on top of 1 inch of ice and coming down hard! Cars were sliding all over the road, including me! Unfortunately, any way I go to my house there is a hill going down and up;( This time the roads were so bad that I started sliding down one hill sideways. I thought I was going to slide into the cop car at the bottom that was blocking the way coming up the hill I guess b/c cars were just sliding down it. Crazy, Crazy, but I made it home:) The Angels guided me the whole way!! Thank you Lord!! The pic above is the next day after my hubby snow plowed:) Thanks Honey!!

Now the following is some really encouraging news from the Cystic Fibrosis Foundation(what your donations for Great Strides fund). Lil' Chris' mutations are Double Delta F508(most common), but it's still promising for him...(click here for the whole article)...


Phase 3 Study of VX-770 Shows Positive Results

February 23, 2011

The Cystic Fibrosis Foundation and Vertex Pharmaceuticals announced today that VX-770, an oral medicine in development that targets the defective protein that causes cystic fibrosis, showed promising results in a Phase 3 clinical trial.

The trial was designed to evaluate patients age 12 and up who carry at least one copy of a CF mutation called G551D. The study included 161 patients who received at least one dose of VX-770 or placebo.

Patients who took the drug, compared to those on placebo, showed a marked improvement in lung function at 24 weeks, which was sustained for the duration of the 48-week trial.

Patients also showed improvement across all key secondary endpoints in the study, including reduced likelihood of experiencing a pulmonary exacerbation, decreased respiratory symptoms and improved weight gain. Each of these areas is critically important to the health of people with CF.

In addition, average sweat chloride levels of patients on VX-770 dropped toward normal levels, while those on placebo did not change — indicating the drug is impacting the underlying defect in CF. Excessive sweat chloride (salt) is a key clinical indicator of CF.

VX-770 is being developed by Vertex, and was discovered in collaboration with the CF Foundation, which provided substantial support to Vertex throughout the development process, including an approximately $75 million investment.

About four percent of people with CF carry the G551D mutation. More studies are needed to determine whether other CF mutations may benefit from VX-770.

“These results are highly encouraging. They provide scientific evidence that support our long-standing belief that targeting the underlying defect of CF may have a profound effect on the disease,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “We have much more to do to end the suffering caused by this disease, but these data are extremely exciting, especially for people with the G551D mutation and their families. The results also offer significant hope that a similar approach to treatment may help the majority of patients living with CF.”

The Phase 3 data support Vertex’s plan to submit a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in the second half of 2011. Generally, the FDA takes between 6 and 12 months to review and rule on a drug application.

“The Cystic Fibrosis Foundation has played an instrumental role in our more than 10-year effort to discover and develop potential new CF medicines such as VX-770,” said Matthew W. Emmens, chairman, president and CEO of Vertex. “The data announced today reflect a significant investment of time, dollars and scientific expertise from both Vertex and the CF Foundation, and we look forward to working closely with the Foundation as we seek to bring VX-770 to people with CF.”

Said Preston W. Campbell III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation: “As a physician who has treated CF patients for many years, the VX-770 results are more than just numbers — they represent hope.” He added, “It’s not surprising that patients felt better on the drug because of the magnitude of lung function improvement and weight gain. These are important clinical outcomes, and the fact they were maintained through 48 weeks is very encouraging.”

Friday, February 18, 2011

New CF Mom Blog / CF Update on Lil' Chris

I met a new CF mom today, so I thought I would share her blog with you all. She has a 7 month old with CF. Her daughter's name is Caroline Josephine and she is just the cutest thing!! She just cultured Citrobacter Fruendii and Psuedo. She could really use your prayers.

So come on CF Community!!! Let's pull together and give her some bloggy love:) Stop by, say Hi, "Follow" her blog, and keep her in your prayers along with all our other CF buddies!!

Click here to go to her blog.

Thanks,
M
PS. Lil' Chris is STILL coughing. The medicine is getting lower in the bottle....praying his cough goes away before the Bactrim is done.

Thursday, February 17, 2011

Hit 800 HOURS on the VEST on Valentine's Day!!


I can't believe my lil' boy has wasted 800 hours of his life doing his Vest treatments!! Erks me, but when I think about how much it helps him, I don't mind as much;) He's getting more and more into playing his DS games now as you can see in the pic above;-)

He actually hit 800 hours on Valentine's Day!! The day before Valentine's Day, the kids and I made cards for Daddy by doing paint hand prints:) Then while I was working on Valentine's morning, they made cards for me with Daddy:) We had a fun day once I got home from work. We opened cards and presents, then played with Big Foot(one of Lil' Chris' presents;) He was a little scared of it...well, he still is scared of it, but he loves it tho;) LOL!

Then we made Valentine cookies!! The kids had a blast helping!! Daddy...not so much, but he helped anyways;-) LOL! They turned out pretty good!!

After that, we went to go watch Daddy play his last indoor soccer game! Spencer gave us all Valentine's;-) Thanks Spencer!! The kids had fun playing and running all over esp at half time when they got to go out on the field. I always feel bad taking them out there, b/c then the guys feel like they can't practice. They are all nice and let Lil' Chris shoot some goals:) Thanks guys!! Daddy signed up to play another session that starts next week!! YEA!!


Chris and I celebrated Valentine's Day the day before by going to dinner and a movie!! We saw "Just Go With It" with Adam Sandler, it was great! It was sooooo nice to get out and go on a date with my man:) I wish we could have date night like once a month or something, but our schedules are always weird and I feel bad asking Oma and Opa to babysit even more than they have to. Thanks Oma and Opa for always babysitting!! Special thanks to Oma for helping out with some vacuuming and cleaning too since my back has been hurting:)

Speaking of my back....it's a lot better than what it was, but it still hurts when I lift heavy things or move or bend certain ways. At least I can sleep a little bit better and don't have to grab onto my treadmill when I get out of the bed anymore;-) LOL! I think my back is getting better b/c I haven't been doing as much lifting and I have been stretching and icing it. The Vest machine alone weighs 30 lbs, so I had stopped lifting it up and down, that seemed to help. Now if only Ayla didn't need to be picked up all the time;-) LOL!

Lil' Chris has been doing good with taking his Bactrim. His cough is still def there tho and sounds nasty. I hope it goes away before he is done the Bactrim. BTW....in my last post I posted a video of him coughing....well, I forgot to mention that he was chewing his Chewable Vitamax vitamin when he was coughing, so he didn't actually cough something up and then started chewing on it;) I know it looked that way and I forgot to say something. Sorry to those who watched it and was totally grossed out;-) LOL

Please say a prayer that Lil' Chris' cough goes away and that his cousin Nathan with Leukemia gets better. Nathan just got out of the hospital and has RSV. His counts are low, so he needs a lot of prayer to get them back up.

Thanks,
M

Friday, February 11, 2011

Cough Video / $125 CF Survey

I'm gonna try to keep this short, but no promises;-)

I didn't post about it before, but Lil' Chris had a bad night the night before Ayla's birthday. We think it was the Chex Mix that he had. That was the only thing he ate that was different. He threw up about 5 or 6 times and was just laying on the couch from nap time to bed time.

Then this past Wed, it happened again! He didn't have anything new, so we still are not sure what caused it this time. He was fine all day, then when he woke up from his nap he was complaining of his head hurting right above his right eye. You could tell he was in a lot of pain, b/c tears were just coming down his face. I felt so bad for him esp since I didn't have any children's Tylenol in the house and I was just about out the door to go to an A-team event for Kohl's(Woo after School Skate Club). I told Chris to go and pick some Tylenol up when Ayla woke up, but he never got to b/c Lil' Chris started throwing up. The A-team event (actually it's called Associates in Action now) was for 3 hours. So afterwards, I called and Lil' Chris was sleeping on the couch, which NEVER happens, and his head still hurt and was throwing up. So I picked up some Children's Tylenol on my way home. He took it, but then threw up, so not sure how much actually got down. He did seem to start to feel better about an hour later though after a few more throw ups. He didn't eat or drink anything though, and we didn't do his Vest just like the night before Ayla's birthday. That's usually the only time I don't make him do his Vest. I don't want to stir anything else up...if you know what I mean;-) He slept good throughout the night other than asking for a drink of water, which I was more than happy to give to him. The next day, Oma said he was still complaining of his head hurting. She gave him more Tylenol before I got home from work and his head seemed better. He was complaining of a bellyache tho, but not for long. We have clinic on March 16th, so I'll have to ask the dr about all of this.

To top it all off....he has had a wet cough for over a week now. I sent a message to the CF clinic about his cough through My Chart. Does every clinic use My Chart??? I LOVE it!! I can send them messages, ask questions, see his chart, see his upcoming appointments, see his throat culture results, and more!! It's a GREAT tool that they added recently. Anyways, to make a long story short....he is started Bactrim last night, 10ml for 2 weeks. Since he was on Augmentin a few weeks ago for an ear infection, he couldn't go on it again, so that is why he is on Bactrim instead. He doesn't seem to mind it tho.



To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $525!!! WooHoo!! You get $50 just for joining!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!!

Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Please pray Lil' Chris' cough goes away quickly and that it doesn't turn into anything serious.

So much for keeping it short;-) LOL!!
M