Saturday, January 31, 2009

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.

Saturday, January 24, 2009

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!

Saturday, January 10, 2009

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.

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