Market Research

Market Research Opportunity

SEEKING: PATIENTS WITH CYSTIC FIBROSIS &

CAREGIVERS OF YOUNGER CF PATIENTS

EARN $50.00

We are conducting studies on the care of cystic fibrosis (CF) in the United States and are looking for adult (18+) patients diagnosed with CF - or the caregivers of younger patients – to join our research panel.

-Participating in this research will be an important contribution towards efforts to advance the quality of treatment and care for those living with CF!

-Qualified participants will earn $50.00 plus the opportunity to earn more money by participating in future research studies.

-To begin, we will need to ask you a few preliminary questions to see if you qualify which will take about 5 minutes. To contact us:

· Send an email to CF_Panel@wwmr.com with your name and telephone number, and we will call you back, OR

· Call Michelle Nordstrom toll free at 1 (888) 947-2339 ext. 112.

· Be sure to mention that you heard about this study from: Erica Kelley's blog

Some details about the research panel:

-Any market research projects will be optional and you will be compensated for your time. Studies might include obtaining feedback on CF medications or suggestions to improve educational brochures.

- For in-person market research studies that you choose to participate in, all surfaces will be disinfected before and after interviews to reduce risk of cross-infection. Interviews will be spaced so that CF patients will not come into contact with one another. In addition, patients will not be asked to handle any materials that have been handled by other patients.

- The panel will never be used to provide promotional materials or to sell anything, and you can opt out at any time. Your information will be held in the strictest confidence.

Sleepy Sundays

While the babe is taking a nap and the house is fairly quiet, I have a few minutes.

Samuel is doing just great! We are eagerly awaiting the news of the arrival of a new cousin for Samuel, Hans, until another name is announced. Samuel has been practicing his tricks getting ready to teach a new follower. Things like, signing "whiskey" instead of "drink" and signing "more" and then sticking his fingers in my mouth to fish out what was just put in there. He's been keeping me pretty busy with a new set of golf clubs that were destroyed within 5 minutes of taking them out of the container. And sailing his sippy cup down the slide. He's such a fun guy and I love him so much and I wouldn't have it any other way.

Lately I have been having trouble putting him to bed to sleep. In the past, he's gone to sleep on his own with no issue. Lately, though, he's just crying non-stop when he's put in his bed. I know the worst thing to do is go take him out, but I'm going to have to work those problems out later. I have to get him out of bed, then take him downstairs to swing him to sleep. Thank heavens I didn't give his swing away. It's been a lifesaver the past few weeks. That, and Baby Einstein DVDs, especially the sleep one. Hopefully soon he will get back to putting himself to sleep, in his own bed.

Today we went to lunch with some friends to Garcia's Mexican restaurant. Samuel was feeling a little grouchy so we were just trying to maintain a pleasant atmosphere for everyone and were giving him things that would keep him happy. Chips, loves them. So, chips he got. But then the waiter put something new on our table. Something we had never seen before at a Mexican restaurant, served like salsa. It was bean dip. Samuel, like most kids, loves to dip his food, so he took a chip and dipped it in the beans. Luckily, it wasn't spicy because it was in his mouth in a flash. At that moment, life, as Samuel had known it, ceased to be. A life without bean dip is not one he wants to live. The boy ate 2 small bowls of bean dip. Oh, and a slice of the cheese crisp he was ordered (it's a tortilla with cheese). It was very funny over lunch, 2 hours ago, but I can just guess the report I'm going to get tomorrow from Miss Amy. It's going to start with "What are you guys feeding him?!?" Followed by something like, "he's had really bad gas today" which will crack him up. He's such a boy. And an Engle boy, at that.

In other news, thank goodness for Samuel's aunt Lori. If it weren't for her and her fundraising efforts on behalf of Team Samuel, this team would be in a big pile of bean dip (and all that implies). She organized a benefit concert for the CF Foundation that was a great success. Thanks to all who participated and donated so freely of their time and talents. As for the other members (and team leader), well, um, there really aren't excuses. But I'm blaming the economy. Donations on line have been incredibly low. It's almost so bad I'm starting to think the link I've been posting is incorrect. Any other ideas?

Meanwhile, I'm thinking about putting together another video. If you would like to submit a picture to be in a video for Team Samuel and the CF Foundation, please leave me a comment with your contact information and I can talk to you about what I'd like to do.

Thanks for checking in. Have a fantastic week!

*sorry no pics this week. Maybe next time. If you REALLY need a picture, check out my Facebook page.

Hello?

Play is the work of a child:

So, I realize it's been over a month since this blog has been updated. I'm a bad blogger, I know. But, really, honestly, I was beginning to think nobody was reading it since there are minimal comments. And, to be even more honest, I've only heard from one person asking for an update. (Thanks, Mom.)

This is the update. Last CF visit went well. His culture didn't grow any abnormal bugs, thank you God. However, about 2 weeks ago, Samuel started to develop a fever on Saturday afternoon. Not the best time to get a fever. We dealt with it the best we could that evening but by Sunday morning, church time, the fever was too high to treat at home. We took him to the only urgent care open at 8am on Sunday morning, not a pediatric specific facility. The doctor heard the words "cystic fibrosis" and diagnosed an upper respiratory infection and prescribed zithromax. Samuel had his first dose that day and seemed to be feeling much better...until 11:00pm. Then, our thermometer was reading an extremely high temperature, around 105.

After the pediatrician, my first choice for pediatric urgent care centers, Phoenix Children's Hospital's east valley location at Higley and Southern, closed at 11. Second choice is Good Night Pediatrics. We loaded Samuel up in the car and head up to Good Night Peds. Saw the doctor around midnight and he did some preliminary bloodwork and tried to get a urine sample. We've discussed urine samples before, but let's just say, Samuel doesn't yet know how to pee in a cup (Put him in a warm bath and that's a different story - he'll fill the tub with pee). Samuel's white blood cell count was 34.8 (thousand...cells per unit?) while the normal range is around 3-10 (again, thousand per unit of measure or whatever). Keep in mind, this was after that first double dose of zithromax earlier in the day.

The doctor at Good Night Peds referred us to Banner Desert Pediatric ER. We showed up at 2am, Samuel got his first IV with some fluids and antibiotics, in his very own negative pressure room, thank-you-very-much! While there, they took more blood, did another catheter and started cooking some cultures. By 5am, we were free to go home.

At this point we still had no clue as to a diagnosis. The perplexing part in all this...Samuel's only symptom was his fever. He had no cough, no runny nose, no strange rashes, nothing unusual. In fact, all the doctors, nurses and techs commented on how his lungs sounded clear.

On Tuesday we saw our regular pediatrician, Dr. Gentile. Dr. G ordered a chest x-ray to rule out pneumonia, even with the no-cough thing. There is a reason I like Dr. G. Later that afternoon I got a phone call. Samuel didn't have pneumonia but he has bronchitis. "Continue with the antibiotic Dr. Gentile prescribed." The antibiotics...his third different medicine in 2 days.

So now we have learned a few things worth sharing:

1. Don't take your child to an urgent care that doesn't specialize in pediatric care.

2. Don't trust the first doctor you see.

3. When giving nasty medicine to a sick kick, chocolate pudding is a miracle. He keeps coming back for more.

Any mommys have experience with bad diaper rash from strong antibiotics? I'd love to know your remedies.

What else we've been up to while away:

Falling asleep with dad and Lucy (it looks like he only has 1 leg in this picture!)

Just can't wait for mom. He has to get the cereal himself.

Future GW University student

Playing at Bass Pro Shops. Yes, we do go other places but they don't have as nice of photo opps.

Musically minded...

Just can't stay awake for shopping.