It just hit me

I said I would report Samuel's weight but I didn't.

Samuel gained a pound and a half since his last visit! Something must be said for Hostess blueberry muffins...

Next, we have IPL on June 5. You can read more about his last IPL here. More updates later. With pics.

no!

It's true!

We've been having lots of fun with Samuel lately. He's really learning LOTS and it seems like he's changing and growing every day. He loves to point out planes and helicopters in the sky and has quite the eye for them. He can spot them from far away! It's really cute to watch him study the sky, see something of interest, then point up and say "See?" We are working on teaching him to say "airplane" but haven't gotten so far yet.

For about the past 2 weeks he hasn't been eating. Not too cool since we, well, he, has to weigh in tomorrow at the CF clinic visit. I'm hoping he breaks his 22 pound plateau. It seems he's been 22 pounds for the past 6 months. Why hasn't he been eating? Well, it appears he's getting 4 new teeth. I'm not sure how many there are in there now. I should count the bite marks on my legs, since that's where he's been biting me lately. Only me. He doesn't bite anyone else. I'm almost thankful for that, really. That's probably the quickest way to get kicked out of Miss Amy's house. :) The other day I was standing in the kitchen making dinner and he leaned over to bite my leg. I told him to find something else to do and so he laid on his tummy to get a better angle to bite my big toe! I couldn't believe it! The eating thing has been getting better, though. Last night (Cinco de Mayo) he was enjoying his staple, bean dip. Yum!

What else is Samuel learning? He's learning where his body parts are. He knows his nose, ears, eyes, toes, mouth and we are working on the fingers. He's also learning how to jump, which is so cute. He gets his whole body involved but his feet don't leave the ground. He is able to "jump" on command. Very funny!

It's becoming clear that Samuel hears the word "NO!" waaaaaay too much. I have to admit, it's not easy to say much else sometimes, but when thinking about it, it's a great learning opportunity to teach him what we want him to do, not just say no. For example, a staple line heard during meal-prep time would be, "Samuel, we don't play in Lucy's food and water bowls. Those are hers." Over and over and over again. Until I put up the gate.

So why do I think Samuel hears the N-word too frequently? Well, it's a known fact that when he is sleepy, he starts to hit. Not very nice. "We don't hit mommies, Samuel We hug and kiss mommy!" Last night, he came over and slapped my knee, then looked at me, pointed to my face and said, quite loudly, "No!" He could also say "Stop!" which comes out more like "Bot!" but still the same thing. It was very hard to hug and correct in love and not laugh at him, but laughing will only encourage the behavior, something I don't want to do.

Other things going on? We are starting to think about what we want to do in our back yard since it's full of dirt, weeds, and dog poop right now. It's a blank canvas. I've got this great idea to install a splash pad! Better than a pool on so many levels. It's been consuming my thoughts for the past few days. 

Pray that Samuel breaks 22 pounds tomorrow. I'm not sure how that will happen after 2 weeks of minimal calorie intake but miracles still happen. If it does, I'll  be sure to post the happy news. If not, I'll probably post that too.

Thanks for checking in!

I almost forgot! Team Samuel at the Great Strides walk! We did great, had fun and were successful. Still getting a team total, but thanks to all who participated!

Kevin Kelley, Lori Kelley Woods, Brenda Kelley, Audrey Sullivan, Tabitha Alexander, Suzanne Francis, Grace Nakazawa, Mike Gentry, Daniel Gentry, Lisa Sifuentes, Eddie Sifuentes, Alexis Sifuentes, Justin Tullock, Delaney Tullock, Amy Tullock (in spirit). Others who are really helping lately are Sandra Ramirez and Ashley Ramirez. Thanks to all of you! It's very touching to have your support and participation. All who donated to our team, thank you thank you thank you! You can be proud knowing your donation is helping to make astounding differences in research and development.

Other interesting pictures:

Chocolate pudding face

Easter Sunday

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.

We are running late

The time is quickly approaching. It's almost time for Great Strides 2009 and we have done little to fund raise. In fact, we've done one video and that's about it. There is a concert planned on the east coast next month and I'm sure there will be a nice response. Thanks Lori!

Some ideas I'm having for fundraising this year to reach our $5,000 goal:

1. We have quite a collection of autographed items: books signed by Hillary Clinton, a John Legend autographed poster, a James Patterson signed book, those are just the things I know of right now. Maybe these items will appear of eBay and be sent to the highest bidder.

2. NYPD fundraising worked well last year. We can do that again. Little coordination on my part (always a plus).

3. Postcard mailing. More junk mail? Nothing with pics of Samuel is junk. :)

4. ummm.... That's all I can think of right now. Any other ideas? Please leave me a comment with your fabulous ideas!

He's a boy!

Samuel is growing up so fast!

We've been using the new vest on a regular basis. It's been a challenge as we are supposed to do it for 1/2 hour in the mornings and 1/2 hour in the evenings. We are working up to that, though, since 30 minutes is a long time to a 1 year old. Not just that, but squeezing 30 more minutes out of the day is tricky. But it is a great time to read to Samuel, snuggle, or watch his favorite TV show, Yo Gabba Gabba! Samuel enjoys the vest. Thank goodness! The other day he actually fell asleep in my lap while doing his therapy. It must be relaxing but it is also a bit loud. Must be like white noise or something. A little video from the first time he had it on:

Since he's been having to take some pretty nasty tasting medicine, I decided to try something new with him. I remember reading somewhere that if you have to give some yucky meds, give it with Dr. Pepper since the 21 flavors, or however many are in Dr. Pepper, cover the bad flavors. The good news is that he got the medicine. He was also sugared up and ready for play when he got to Miss Amy's that first day. He knows what he likes and it's watered-down Dr. Pepper.

Like most kids, he enjoys sugar in any form, really. He's been getting M&Ms from time to time and Kevin is convinced he can hear the zip-lock bag open. Can you blame him?

Miss Amy gave him a box of little conversation hearts for Valentine's Day. He must have had some at her house because he knows what's in the box and today he actually climbed on top of Lucy's dog-bone box to get them out of the pantry. Today, snack was not complete without some candy. More candy than I would have liked him to have.

Samuel is really getting into climbing up on things. The new vest box is especially convenient since it's next to a chair. Not exactly what I would like him to be climbing on, but it's very stable and can't tip over.