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.

1 sick little boy + 1 sick big boy = no fun

Samuel at the pediatrician's office. Sleepy!

Samuel is still sick. Or maybe he's sick again. He was on zithromax all last week for ear infections. I suspect they never went away from a few months ago. So, last Friday we finally wiped our hands of the antibiotics and went on our merry way. Monday, sick. Fever. Bad, bad cough. Back to the doctor. One ear is STILL infected. So we have a new (to us) antibiotic to clear up that ear, hopefully once and for all, and cover whatever may be getting started in his chest. A few nights ago it was like old times...up every hour. Thankfully, that was just a one-night occurance. Now he's sleeping quite a bit and has been asleep for most of the last 18 hours. Maybe he can sleep this off.

Kevin, too, is sick. Cough, the cruds. He was so sick yesterday I convinced him to go to Urgent Care. So I'm now taking care of my sick men...

Lately my kitchen hasn't seen much activity of the cooking variety. Samuel gets all the stuff out so it looks like I've been busy, but we've been eating dinner at more convenient locations lately. Those times are the best for picture taking so here are some of my favorites from the past few weeks:

Wendy's - This is progressive. Eating chicken nuggets and french-fry sword fighting with dad makes one little guy very happy!

But something goes amiss...Oh NO! What's wrong? It would appear he got a swat on the hand but I've never swatted him so hard to make him cry. Usually he laughs at me. I suspect his feels were more hurt than anything else.

Buffalo Wild Wings - He was so into the fight that was playing, he was turning into a high-chair potato. With all the TVs in that place, the only one he wanted to watch was the fight. It was very strange.

Let me put in a plug for the Mesa, AZ location of Buffalo Wild Wings. This was our experience that night. We went there for dinner a few Saturday nights ago. We weren't planning on watching the fight or anything there, just eating. We decided to sit outside since it was very nice with the heaters on and no wait. Just as we got settled in at our table (meaning, all of Samuel's stuff out of the bag) 2 guys came outside and were smoking at the table next to us. It never occured to us that people would be smoking but they were allowed since we were outside. Kevin went in to ask our waiter what we could do and briefly explain Samuel can't be around that. The staff, hostesses, manager, everyone immediately took action and we were invited to move inside at the next clean table. We were so impressed with the staff. Being so busy, they could have easily said "No, there isn't anything we can do." Thanks to Buffalo Wild Wings for your outstanding service on such a busy night!

Barro's for Pizza and Salad. Samuel got his own drink with a fancy straw. He learned to make it whistle that night but was easily distracted by kids playing in the other room.

When I came home the other day, this is what I found:

Last post I mentioned Samuel's vest was coming. It's here and it's wonderful! We did a 10-minute session the other day and Samuel did great. It didn't take long to figure out it made his voice sound funny. When we first started the machine, he was a bit scared but that passed when Kevin was holding him. Samuel did great and we are so excited to have this! We have video but can't upload it this time. Maybe in the next few days.

Thanks for checking in.

You wanna hear what happened in this house today?

Not too much really happened in the house. But there was a "first" I'm supposed to post.

Samuel's grandparents are visiting from Virginia and wanted to go to the Heard Museum in Phoenix, so after a wonderful breakfast at Joe's Farm Grill (yum!) we loaded up the car and went to the museum. Samuel's first museum trip! Overall, he did great. Many positive comments. Nothing was broken and he was quiet most of the time. His favorite part was the video about the Havasupai Tribe in northern Arizona. I think he liked that mostly because he got to push a big green button to get it to start.

He is ALL over the place,trying to walk down the steps like a big boy, hiding in cabinets and trying to figure out how water comes out of the faucet. He has perfected his skill of sliding off the couch or a bed on his tummy. The only problem he faces is sliding off of our bed. It's considerably higher from the floor so he gets half-way then can't decide if wants to let go and continue to slide or try to get back up.

Last weekend we took Samuel to the playground in our neighborhood. He slid down the slides, played on the swing and just had a great time running all over the place. What a great place to play! He was having so much fun he didn't want to leave when it started getting dark.

A few have asked about his chest therapy vest (really called a high-frequency chest compression vest, or HFCC). This is a vest that will take the place of the chest physical therapy (CPT) we do manually, clapping his back and chest. It's more effective than we are and a fabulous medical device to help loosen the mucus from his lungs. This vest will grow with him and he will probably use it for the rest of his life. When he outgrows one size, we will receive a replacement. As far as the cost, we DO have a "patient responsibility", meaning our insurance will not cover 100%. However, the company will work with us to spread our payments out over 36 months. The entire system will be here Tueday and we will begin using it as soon as possible. Thank you Jesus for making this available when there seemed to be no way!

A Samuel Update

11:57pm on New Year's Eve

Christmas Morning - Dancing with his Yo Gabba Gabba guitar on Christmas morning. Thanks Miss Amy, Justin, Delaney and Sartins!

Christmas Morning

WOW! Life is busy with a 14 month old!

Samuel is all over the place. He plays hard and right now he is sleeping hard, thankfully. His latest "toy box" is my kitchen cabinets with the pots and pans. He walks over, flips open the door, and climbs in. This morning, he took out the largest skillet I have and dragged it across the tile floor to the living room. He was very proud of his find. Most of the kitchen cabinets are his, he thinks. In fact, there are only 2 cabinets in our entire house that he can't open and I'm pretty sure he's been in all of them.

He also has developed a special interest in bath time. When the tub is filling up with water, he can't get in there fast enough. And if he is taken away from the tub to get his clothes off, he gets super mad. The other night he knew the bathwater was waiting for him and when he was taken to his bedroom to strip down, he just about had a temper tantrum. OK, he did have a temper tantrum. It's hard not to laugh because his feelings are so hurt and he just can't understand he's going back. Now, if I could just work on him not peeing in the bathwater...

Earlier this week we had our quarterly visit at the CF clinic. It's the first one since he's been walking and he was ALL OVER the place. Samuel is just short enough to get under the desk without ducking too much. And there are cabinets there. He was really having a fun time flirting with himself in the mirror. Funny how we never noticed how much those rooms echo when a kid yells. But down to the good stuff.

Kids with CF don't get as many ear infections as those without, according to Samuel's doctor. Nobody knows why and we can't explain it, but I'll take it.

Samuel's weight has fallen short again. Possible explanations:

1. He's more active than ever before (MUCH more active...)

2. He had pneumonia in October

3. He had a bilateral ear infection last month

All of these things take extra calories and when a boy is so busy he doesn't want to take time to eat, this poses a problem. He must have known we were concerned about his weight because Thursday and Friday he ate like a champ all day. He ate everything I packed in his lunch on Friday which included 3 chicken nuggets, about 1/4 cup mixed veggies with butter, 2 cereal bars, 1 butter cookie, animal crackers, and 1 string cheese. All of this just while at Miss Amy's house. We are determined to plump him up. :)

Like every visit to PCH, this one was sobering. It's a sort of kick in the pants when I see mothers pushing their children around in strollers and feeding tubes are coming out from under the blankets. This is probably their first time out of the hospital room all day. And I'm standing there, holding my baby, waiting for Kevin to bring the car around so we can go back home. Yes, we get to go back home today, we don't have to stay. We were planning on eating lunch in the hospital cafeteria but weren't able to get in. It's RSV season and they don't want the hospital kids to catch RSV from the "outsiders" like us. So they have temporarily closed the cafeteria off to guests and visitors to allow the children to come down from their rooms to eat lunch. It would have been easy to be frustrated at the inconvenience of having to go somewhere else to eat, but then I thought, "What if going to the hospital cafeteria were my only option?" Thank you, Lord, for the health of my family and your constant watch over us all.