I am Samuel's Mommee

We've moved

2010-04-20T09:52:00.002-07:00

Well, I've moved. I'll be blogging over at cfmommee.blogspot.com

Come over and check it out!

The non-CF related trip to the ER

2010-04-20T00:43:00.001-07:00

A few weeks ago Samuel woke from his nap not quite himself. He went to nap at 11:30am and woke at 2:30pm with some extra issues.

I noticed right away that something wasn't quite right with his left eye, but thought he was just still waking up. When we went into the other room, I noticed the hives around the back of his neck. I was scratching and a little more clingy than usual. Lifting his shirt, he didn't have them anywhere else on his body, so I decided to call the pediatrician's office to find out what I should do. It was still early enough they might be able to get him in that day, I thought. When I called, I had to leave a message for the nurse and while waiting for her to call me back, Samuel was doing normal boy stuff: jumping off of the Wii Balance Board and saying "Mom! Watch this! Didja see that?"

The nurse called me back, gave me some dosing instructions for children's Benadryl and was just about to get off of the phone when she asked if he was having trouble breathing.

"No." I said.
"Well, if he has trouble breathing or his lips or tongue start to swell, just take him to the ER."

I turned around and wondered who punched Samuel in the mouth. His upper lip was starting to swell on the left side. I said to the nurse, "Well, his lip is starting to swell now." She replied, "Just take him to the ER."
Me: "Right now?"
"Yes, right now."

Seemed a little strange. I mean, he didn't appear to be in immediate distress. Nothing a little Benadryl couldn't handle, right? But, not wanting to mess around with it, I grabbed his shoes and told him we were going on a car ride. And am I ever glad we went then. By the time we got to the hospital, about 10 minutes later, things had gotten pretty bad.

Notice his puffy hand, swollen left upper eyelid, right lower eyelid, hives on the neck and lips like Angelina Jolie.

We were immediately taken back to a triage room and Samuel started to receive care from one of the best PAs out there. Even though I had been asked by everyone about what he had to eat that day, strangely, they never asked about medical history so I volunteered the information at what seemed like an appropriate time. They were already working on getting Benadryl right away but when I mentioned CF, the PA says (this is my favorite) "Oh. That changes everything." (Yeah, no kidding.) They put in orders for prednisone.

By this time, it had been about a half hour to 45 minutes since Samuel had woken from his nap. I'm sure he was hungry, itchy, and just all around miserable. He ended up gagging when the PA was checking his throat and vomited all over his blanket (his blankie!) and me. I was getting a little irritated when I was calling for help and nobody came in. And the nurse couldn't figure out if the O2 sat lead was supposed to go with the light on the top or the bottom of his toe. Honestly. But she was the only one who wasn't competent that evening.

The Benadryl kicked in rather quickly and on his way back from paying our $100 co-pay, Kevin and the staff were joking about how that's the most expensive Benadryl he's ever seen. We were mentally preparing to get back home when the PA mentioned he wanted to monitor Samuel for a little bit... like 45 minutes or so. We were moved to another room and snuggled up on the bed under some blankets, since Samuel's clothes had been taken off and he refused to put the gown on (can't say I blame him. I wouldn't wear anything with teddy bears on it either!)

About a half hour later, Samuel had drifted off to sleep but was woken and sat up. His back was covered in hives. Kevin and I were shocked to see the reaction had come back and was worse than before. We called for the PA and sat and watched as more hives appeared on his face, neck and torso. It was wild to see them just pop up so quickly.

This was taken after the second dose of Benadryl had worn off.

After 3 doses of Benadryl, 1 dose of prednisone and 7 hours in the ER, we were finally able to go home. We have 2 ideas of what could have caused such a significant reaction.

a piece of cinnamon candy I shared with Samuel before his nap.
Inhaled Tobi since it was one of the last things he had done before laying down.

Whatever it was, it's very strange that such a sudden reaction was delayed for 3 hours while he was sleeping. Meanwhile, he hasn't had any more cinnamon candy nor inhaled Tobi.

Let's just hope his last culture doesn't grow more pseudomonas or we will be in a pickle. Actually, he will grow it eventually and the inevitable will happen. We will have to challenge him (a.k.a. give him some of what we think may have caused the reaction) at PCH where they will be fully equipped should he react. As Dr. R said, whatever it is, if he just got hives last time, the next time he's exposed, he'll get more than hives.

What could be more scary than the instant hives he had this past time? Instant shock?

And that, ladies and gents, is how we managed to have ANOTHER ER visit unrelated to CF. Seriously, can't they come up with a frequent visitor program? Especially for parents of wild 2-year old boys.

Samuel's birth/CF story

2010-04-11T22:51:00.001-07:00

Late last year I started to tell Samuel's story. It was the first time I had attempted to record the story and I think I had a tougher time with it than I expected. You can play catch up here.

So picking up where we left off: It was a Monday. I was 2 days past my due date and I was so done being pregnant. Early that morning I was having some contractions but nothing crazy. Monday evening I told Kevin to pick up some pasta and sauce on his way home. I added some extra basil and oregano to the sauce since I had nothing to lose. I'm not sure if it was completely the herbs, but something worked and with a few hours I was having regular contractions. We went to the hospital at 11 PM. Lots of walking, waiting, seeing spaghetti again. No need to give a run down of the time in the hospital. Just some highlights:

water broke at 4 am
epidural requested at 4:35 am (thanks to the nurse who said "Your contractions will be a lot worse now that your water broke." I shouldn't have listened to you.)
pushed for 20 minutes

Thankfully, at 1:30 on Tuesday afternoon, my dear son, Samuel entered the world. He weighed in at 7 pounds, 3 ounces and was 21 inches long. He was pink and screaming and "perfect in every way". We stayed in the hospital for 48 hours and were so ready to leave on November 1. I remember being so happy to get home but thought "Now what?"

The next week is a blur of sleepless nights, spontaneous and unexplained crying (by me and Samuel) and learning to nurse. My parents were able to come visit and help with taking care of me and our house. Kevin was scheduled to travel to his company's home office on the 12th, just after my parents were scheduled to leave. I was secretly very worried about being left by myself with Samuel and nobody else to help.

Just some background: In the state of Arizona, newborn screening became mandatory on November 1, 2007, the day we left the hospital. When Samuel was about a week and a half old, it was a Friday afternoon, our phone rang. It was his pediatrician calling to tell us Samuel was a carrier of cystic fibrosis. OK. Great. Thanks for the information. Have a nice weekend. I really didn't think too much else of it.

Over the weekend I had convinced my mom to stay with me a few days longer (I'm sure it wasn't that difficult). On Monday, after Kevin had left for his trip and my dad went back home, the phone calls started. The CF clinic wanted Samuel to come in for a sweat test. As a new mom, I really didn't think anything was wrong with Samuel so I blew off the request to bring him in. I just thought it was something I would deal with when Kevin got back in town. On Tuesday, they called twice and had the pediatrician's office call me. I knew something was up when the nurse said I needed to call them "right now". I called. They asked if I could bring Samuel in for a test right then. That was a Tuesday afternoon. My mom was scheduled to leave the next day. I was NOT mentally ready for more testing on my son.

We packed up the baby and took him to Phoenix Children's Hospital (PCH) for his sweat test. My mom had spent some time looking up cystic fibrosis online. Somewhere in there I called Kevin and told him he had to come home. I didn't think anything was wrong but I knew I didn't want to go through all of this by myself. Looking back, I should have seen the red flags waiving everywhere that day. We didn't wait in the waiting room and the nurse conducting the test repeatedly mentioned she was staying late but wouldn't say why. On the phone with a colleague, she said she was asked to stay to accommodate our test but wouldn't say much else. I was told we already had an appointment with the pulmonologist the following day so we had to get the sweat test done that day.

On Wednesday morning, I took my mom to the airport, stopped by the office to show the baby off to my co-workers, then picked up Kevin from the airport. We went to PCH for our first appointment with the doctor. Again, red flags waiving in my face and I ignored them.

We didn't stay in the waiting area with the other patients. They took us to wait in an office/storage room.
Samuel had lost weight after birth and hadn't gained it back. He weighed in that day at less than 7 pounds. His weight at birth was 7 lbs, 3 oz.
It seemed like more than the average amount of nurses helping us. Even the nurse who conducted the sweat test stopped by during the vitals process. There was one in particular who kept saying things like "You'll have to strip him down naked every time you bring him in until he's 2." While being polite, I remember thinking "This lady is crazy. I'm not ever coming back here again because nothing is wrong."

It was that day we were told the news that Samuel did, indeed, have cystic fibrosis and our lives would change forever. That day we covered genetics (how it happened), what it meant for our son, for our family, and what we should start doing right away. Really, it was a blur and there are lots of things I don't remember, lots of things I would have changed, and lots of things I'd rather forget from time to time.

That evening we got home and started over again with the question "Now what?" It was just the beginning.

A long-awaited update and Easter

2010-04-09T23:07:00.001-07:00

The long-awaited update!

We have had an appointment with Samuel's pediatric pulmonologist and it's been decided that Samuel does NOT need a g-tube at this time. His weight goal for his last visit was to average 9 grams per day. His average was 12 grams per day! Um, yeah, he's 2 and he does whatever he wants. Or, he tries to anyway. :)

So how did I he we do it?

First, we changed some meal-time habits. Whoever is home sits and eats at the table with him. The high chair got shoved in the corner and he now sits in a booster seat at the table with us. Routines are more firm now and meal-times are more definite. (I say this as he's snacking on some cheese while sitting in the floor watching a movie...so call me a liar.)

Second, we added more calories. I know, I thought it was impossible too. As it turns out, canola oil can be added to quite a bit of food! He has some sort of full-fat yogurt (YoBaby or la Creme are the favorites) with canola oil mixed in. For a 4 ounce cup of yogurt, I mix 1/2 tablespoon of canola oil. For the 6 ounce cups 1 tablespoon. I know the ratio isn't equal but it didn't matter too much to Samuel as far as taste is concerned. I noticed his digestive system handled the 1/2 tablespoon better. (attn caregivers or people with CF, you can read between the lines here). I also tried to make meals especially for him as much as possible. Things like macaroni and cheese, double buttered waffles, or grilled cheese sandwiches with butter on the inside and outside of the bread and 2 slices of cheese (this can get a little messy to make) seem to be his favorite. Oh, and bacon. The boy likes bacon! And sour cream! He'd probably love bacon dipped in sour cream.

Doing these things has really helped him and I hope my tricks help others.

Samuel was blessed with THREE Easter baskets. The first one he opened was from his Grammy, Papa, Uncle Jeff and Aunt Lori on Saturday. After making a neat pile of grass and pulling all items out of the box, I asked Samuel what the favorite item from his Easter basket was. He quickly held up the VeggieTales marshmallows. I think he likes looking at them because he's tried to eat 2 of them but doesn't really care for the marshmallow too much.

The second basket was from mommy and daddy on Easter Sunday. It was a busy day and mom didn't get any pictures but he really is enjoying the stacking cups from it.

The third and final basket was from Gagaw and Papa Engle. It got opened the day after Easter. And the favorite item was the lamb.

Or so he said. Really, he's been playing with the yellow foam, glittery egg-on-a-stick more than the lamb.

(Did you notice the hair cut in there? His mom did that! ...such talent... )
And, if you think celebrating Easter for 3 days is quaint, get this: We celebrated for 4 days! Oh, yes, we still had to hunt the eggs! So on Tuesday, while Samuel was napping and before I had to scoot off to class, I hid the eggs around the house. It was so much fun to see Samuel search for candy-filled eggs. He was so pleased with himself and even more delighted when he figured out how to unwrap the chocolate he found inside. Kevin, on the other hand, was not so thrilled to turn the corner to find Samuel with chocolate all over his face and hands.

Some random yet funny pictures:

He puts the blanket over his head to go to sleep in the car. He's asleep under there!

He posed for this himself! What a silly goose...

Annual Clinic visit and results

2010-01-28T15:59:00.001-07:00

Samuel had his annual CF clinic visit, which seemed much like a routine visit, on Tuesday.

Just a little background information about me, Samuel's mommee. When I haven't slept well, any and all coping mechanisms fly out the window. Knowing this, it was not good that I didn't sleep well Sunday and Monday evenings. I was tired on Tuesday. Monday evening I kept thinking "I need to get rest. Tomorrow is going to be hard." But did I get good rest? NO! Of course not!

Some other background information: We've been struggling with Samuel's weight (or lack thereof) since he was probably about 9 months old. It was then that we started altering expressed breast milk to add extra calories. We've always been aiming for the 75th% as far as his height to weight ratio, but have only come close at one visit and that was about a year ago.

You may recall his study visit (not a normal clinic visit) revealed a 0.6 pound weight loss over a few months. This got me super busy trying to make up the difference before our clinic visit less than 2 weeks later. While we did add a few ounces, he weighed in at 26 lb, 11 oz, we didn't make it back up to his previous weight of 27 pounds. This brought his height/weight ration percentile down to the 10-25% range.

While this weight plateau is normal for a child without a chronic disease, it's a cause for concern in someone like Samuel. We've been adding as many calories to his food as possible, encouraging him to eat as much fattening cheese, milkshakes and pizza as possible. I can only imagine how he must feel after eating such heavy food all the time. His "super milk" alone makes me queasy. 4 ounces of whole milk, 4 ounces of half-and-half plus a packet of Carnation Instant Breakfast...there is nothing refreshing about chugging half-and-half.

In the 2 years we've been taking Samuel to clinic, we've learned where we stand on his weight by how quickly the nutritionist would come in to see us. It should have occurred to me after we were kept waiting for about 45 minutes that something bigger was going on. But, again, the lack of sleep thing...

Samuel's doctor, Dr. O, came in and apologized for keeping us waiting. Our conversation flowed as normal for a while. Then we discussed the weight issue. I really respect Dr. O. He's never used scare tactics to influence our decisions. So I was pretty open minded when brought up the G-tube. Remember, lack of sleep and I can't cope. I started to cry. I knew this conversation was coming. I just had a feeling that today would be the day since he would have a weight loss.

However, as the nutritionist put it, it's an issue of volume. He needs about 150% of the "normal" caloric intake for a boy his age but he doesn't have as much room in his stomach. That means, if a 2 year-old without CF needs 1400 calories, he requires 2100, just to maintain. When he gets sick, (notice I didn't say "if") he will not eat as much, meaning he will lose more weight and we will be further behind.

To me, a g-tube is a last resort, although I know it's not supposed to be. It's just hard, knowing that as much effort as I put forth, it's not enough. It's heartbreaking, really.

It's also heartbreaking to try to convey the concern to someone who doesn't understand. It's not an issue of eating. Samuel eats like a normal 2 year old. He eats when he wants, and when he wants, he can eat a LOT. He drinks the "super milk"....as much as 16 ounces of it a day. I make special food for him all the time. He eats cheese with every meal. Milkshakes about 3 evenings a week. I can't make him eat any more.

Yes, he is very active. I know this burns a massive amount of calories. But I will not discourage his activity because I know it is vital for airway clearance.

For right now, it's still our decision but we are being encouraged to strongly consider the idea. If we go ahead with it, it will not be a temporary solution, just like this isn't a temporary problem. He will likely have the G-tube for many years, likely until his teen years or later. Of course, it will be changed to accommodate his growing body, probably about once a year.

We are still considering the idea, trying to get used to what it means to our family and just how much it will change things, better or worse. Part of me still can't believe this is even being considered. It's a lot to wrap my mind around.

Thanks for your continued thoughts and prayers.

I've been inspired: Our IPL story

2010-01-28T02:18:00.001-07:00

There is so much I want to write about today since we had our annual clinic visit yesterday. When I say "annual clinic visit" it's really meant to be were we review the last year and make new goals for the upcoming year. But really, for us, it's not too much different than a routine (read: every 2 or 3 month) clinic visit.

But I'm not talking about yesterday's clinic. I'm talking about our experience with IPLs, or Infant Pulmonary Labs...the infant version of Pulmonary Function Tests (PFTs). See, what happened was, I just read another blogger's experience with taking her son to his first IPL and was thinking about our first attempt and first real IPL. She spoke about her experience with her son and I thought I could offer our perspective as well. And it will help get my mind off of our news from clinic yesterday.

Let me start this by saying I am not a medical professional. I'm just a mother who has gone through this one and 3/4 times. :) Yes, my experience and advice are editorialized. I'm a blogger. It's what I do. If I missed a responsibility of a team member, I apologize ahead of time. Like I said. I've only gone through this one complete time.

So this is how it goes, at least, it's how it went for us:
Samuel's IPL was scheduled at 1:00. We needed to check in at 12:00 noon. Once checking in, we went to the area of Phoenix Children's Hospital where they conduct various sleep studies. In same hall with us were other exam rooms. One had a scale where we had to get Samuel's current weight, as in, weight that instant, to calibrate the machine. While the machine was being calibrated, we answered various questions about Samuel's day, last meal, last drink, current meds, etc. and kept him awake. The machine calibration always seemed to take longer than I thought it should.

By about 1:00, it was time to start sedation. The sedation of choice: chloral hydrate. It tastes bitter (I'm told) so giving a hungry, sleepy infant, a bitter tasting liquid doesn't seem very nice. The first time we attempted the IPL, our nurse also had some sugar water on hand to help it go down a little easier. I appreciated this gesture.

Note that we did not need to put Samuel in a hospital gown but I made sure to dress him in comfortable clothing free of hard buckles or buttons that could hurt him when in the vest-like contraption.

Once Samuel went to sleep, which took about 15 minutes to make sure he was in a deep sleep and not just dosing, we put him in the boxcar. It's not really a boxcar, but it looks like one. Once laying down, they put his arms in the vest, and a bladder on his chest, used to expel the air from his lungs during the test. The vest hooks up to various tubes. They also put a mask on his face, sealed tight with medical putty. There are also various hoses an tubes coming from the mask. Also, he had a monitor attached to his foot (I think) to track his vital signs.

The test was done in two segments. The first half tested Samuel's lung function. The second half repeated the first but after administering Xopenex. From the time he got in the box, it took about an hour. Although we were able to watch the test being administered and real-time results, I had no clue what I was watching. I found it more interesting to follow the nurse.

There were three staff members with us during the test: the physician administering the test, respiratory therapist, and nurse. The physician actually performed the test and tracked results. The respiratory therapist made sure the materials were appropriately sized and fitted, and administered the meds at the appropriate time. A nurse helped with getting Samuel's weight and served as his advocate during the process. She tracked his pulse and blood pressure routinely. She also helped rock him to sleep and wake him up at the end of the procedure. (Can you tell I spent more time paying attention to the nurse?)

After the procedure was finished, we had to wake Samuel up to make sure he was able to swallow without choking. He had some apple juice and was able to go back to sleep. While he was being woken up, the physician was able to print and and review the test results with us. It was great not having to wait for these results but having them instantly.

Needless to say, Samuel's sleeping and eating routine were a complete wreck that day. I tried to not let him sleep the entire afternoon so that he would rest at night. I also tried to catch up on lost meals by giving him frequent snacks when he was awake.

You can read about our first attempt, and first real IPL on the links provided, but I'll give some pointers. Hanging out with a hungry, sleepy, cranky baby isn't really a lot of fun. So here are some of my suggestions. Do what you want but this is what worked for us.

Take advantage of the cut-off guidelines for feeding and drinks. If the nurse says no milk after 9:00 am, then feed until 8:59 am. No clear liquids after 11:00? Keep water there until 10:59. No need to make them suffer for longer than necessary. And really, they might not even notice. Yes, I said might. Samuel was more concerned with not being able to sleep.
As painful as it is, prepare to party! Keep him or her awake, no matter what. We ran errands because I knew it would keep Samuel occupied. But if, for your baby, it means going to the park or swimming in the morning, do it. Stay busy and have fun. There is no reason to make the entire day miserable for your child.
Prepare to wait. It stinks. When you get to the hospital, or where ever you are having the test done, know this: it won't be as quick as you'd like. For us, we had to register at the hospital which meant staying the waiting room for a while. Once registered, we still had to wait for the machine to be calibrated. Trust me, it seems like it takes forever, but it has to be done. Just try to hang tight.

Please let me remind you: I am NOT a medical professional, although I am planning on it. This review was simply from my perspective as a mother.

I hope my review helped prepare you for what to expect at your child's IPL. The process can be quite intimidating but it's worth it. If you have any questions or I left anything out, please feel free to ask.

An official update

2010-01-25T09:19:00.000-07:00

It's been a while since I've updated.

Last week we had a follow up visit at Phoenix Children's Hospital. This was not a normal clinic visit, but a study visit - regarding the hypertonic saline study Samuel is participating in. We were expecting the normal news and events so you can imagine the surprise when the scale revealed a weight loss. A 0.6 pound weight loss. Now, for myself, I'd be delighted to lose this amount of weight and it's not difficult for me to do so. It's also that much easier for me to gain it back. In one afternoon.

But it's not so easy for Samuel. In fact, I often feel like we fight for every ounce he gains. I remember when he was stuck at 22 pounds for about 6 months. (Not sure if it was exactly 6 months but it sure felt like it!)

That very day I came home and started in on the "pink" milkshakes. He likes drinking strawberry milk so I enjoy making him some strawberry milkshakes. Yes, I eat vicariously through Samuel. Gotta problem with that? :)

He must have picked up on my stress (who wouldn't have?!?!) and almost immediately started refusing his ezymes. Talk about frustrating! What good is eating high-fat/high-cal if he can't process it?

Then, it wasn't too much later when the only thing he wanted to eat was Cheetos. Boys can't live on Cheetos alone but he sure tries. Luckily, the enzyme and eating strike has lasted only a few days but I'm feeling like we can't afford to lose any days! We have a clinic visit on the 26th where his weight will be taken and it will count then. I'm fearful we are having a repeat of the last weight plateau. He had a pseudomonas infection then. I *really* hope this is not the case. Aside from our high co-pay for Tobi, the time it takes to administer is just a little over our sitting-still time limit. It takes about 25 minutes just for that one medicine to be administered, making his twice-daily routine well over an hour.

Besides all the medical updating, Samuel is a fun two year old! He is such a sponge and is learning more than I realize. He says things like "I don't know!" and "What happened?" The other evening, as we were driving, Kevin and I realized that we were in the wrong lane to pass straight through an intersection and would have to sit at the light for another cycle. Kevin said "Oh, fiddlesticks" I said "rats!" and Samuel chimed in from the backseat with an appropriately and equally disappointing "Oh MAN!" And it was at that moment I was thankful we don't have, nor generally spend time with, potty-mouths.

He is also really enjoying spending time with me in the kitchen, which has become more frequent since my recent, uh, status change. Working at home means working in the kitchen! When he thinks something is happening at the stove, he wants to be held to see what's going on. And let me say, in addition to being dangerous, cooking with one hand is just about impossible. So last night I got smart. I brought his high chair in the kitchen, set it a few feet behind me, gave him some cereal to ~~throw in the floor for the dog~~ snack on, and he sat (mostly) in the high chair and watched me make dinner so I could cook.

Lately we've been having trouble with him not wanting to sleep and not wanting to stay in his bed. Just one more reason I have yet to transition to a big-boy bed. Last night, midnight, this was happening again. Kevin and I wanted to go to sleep and Samuel wanted to play the piano/our foot board and sing us some songs. A few nights ago I attempted an new strategy and it worked then and again last night. If you are having issues with your little one not wanting to go to sleep, I highly recommend trying it. Instead of saying "You have to go to sleep now" I said "Mommy and Daddy have to go to sleep but you can stay up as late as you want. You just have to stay in your bed. What story would you like me to read to you before I go to sleep?" Last night we read about Hermie, he had some toys, I left the closet light on and was only awakened a few times by a singing, playing little boy. It was wonderful.

Just a wee-bit busy

2010-01-18T12:52:00.000-07:00

Yeah. My last update had me saying I turned in my notice, which I did. And my new job started on the 4th. It's been great! There is just one thing. My old job didn't exactly let me go. Not complaining. I love being needed. But now I'm just working from home. It's been fun: caring for an infant and a 2 year-old and ~~working~~ trying to keep up with the work that's pouring in from the office. So, my dreams of feeding kids, then everyone napping for a few hours while my house stays in pristine condition, and I get to spend my time in devotions, blogs, tweets, and crafts to my hearts extent have been crushed. Destroyed. In fact, I can't even finish this post because the kids are waking! Needless to say, switching gears to a stay-at-home mom has been eye-opening. And I love it.

I did it.

2009-12-23T12:38:00.000-07:00

I turned in my notice at my day job.

I think I'm crazy. In a time when people are blessed to be working, I have decided to stay home with Samuel.

It wasn't an easy decision. I have the best job in the world. I work for a great company. They have never made me feel like Samuel shouldn't be my priority. But when it comes down to it, I was putting that pressure on myself. And we all know that when spread too thin, we aren't good at anything we attempt, and that is what was happening.

Keeping Samuel healthy is a full-time job in itself. Over the past year while I've been working at another job during the day, I've had GREAT help in making sure Samuel's needs are being met. He has the BEST care-giver a mother could ever hope for. Miss Amy (MeMe, as Samuel calls her) is willing to do whatever it takes to keep him at the top of his game. She cooks special meals for him. She steps in and administers albuterol when he needs it. Truly, I couldn't have found a better care-giver for Samuel unless, of course, I cloned myself, and even that is questionable.

But, as the year has gone by, I've found that I terribly miss being with him during the day. I've been praying for God to open a door to make it possible for me to have the best of both worlds: stay with Samuel and do something from home to help financially contribute to our family. Well, it happened. It was an open door. I asked and it worked out. Amazingly. I'm still astonished at how God works sometimes.

And then I started second guessing. Is this the best decision for us? I love my job! Is it really time for me to leave? In this economy... who really leaves their job? What about my co-workers? They are my friends too. What about the adult communication that will vanish from my day? uh-oh. This was going to be a tougher decision than I ever anticipated!

But, last week, I spoke up and made a decision. It's best for Samuel and, honestly and truly, no matter what I want, I have to do what's best for him and his health. And this is the best for him.

December 30 is my last day at my office job. Then I start the most difficult job in the world: stay at home mom. I'll be helping my dear friend Anna with her little (well, younger...he's not little...hee-hee) guy 4 days a week. I am so blessed. I'll go crazy, for sure, but it will be awesome. And in my spare time (ROFL) when I'm not chasing a very active two-year old, potty training, warming bottles and changing tiny diapers, I'll be studying chemistry. It's the last class I have to take before I can enroll in the nursing program. Yes, I'm going back to school too. Lord, help us all.

So, no, I'm not really leaving a job, I'm just changing jobs. And I am so excited about it. It's bittersweet, really.

Again, God help us all.

it's not worth it

2009-12-22T16:00:00.001-07:00

Confession: I'm a selfish giver. I give things away knowing I'll get them back eventually. For example: I've given Samuel's friend Hudson shirts, shoes and toys knowing that when Hudson grows out, it will end up back in Samuel's closet.

It's in the spirit of selfish giving that I'm telling you to not even bother checking out this giveaway from BabeeLove.

The "Believe" pillow is not the cutest thing you've ever seen and you will have to look long and hard before you find anything you like on YouCanMakeThis.com. Trust me, I searched it for you already. And don't even bother going to BabeeLove and entering to win the current giveaway. You probably won't win either of the 2 she has available.

But, should you not take my advice and go over there anyway, don't steal my chances of winning. Good luck.

For those keeping track

2009-12-15T17:55:00.001-07:00

I was impressed with Samuel's interest in the potty. I speak in the past tense because we had a relapse this weekend. Well, I didn't. He did.

I'll save you the long story but give the high points:
Samuel sat on the potty for 15-20 minutes with no activity.
I got Samuel dressed.
Went to get myself showered and dressed.
Samuel got himself undressed and went streaking through the master bedroom and closet.
He stayed missing a bit longer than most streakers do.
Samuel walks out of the closet and calls to me. "Mom! Mom!"
My response: "Yes, Samuel?"
Pointing to where he came from: "Mom! Pee!"
Indeed. Pee. All over my dear husband's clothes.
Thanks, sweetheart, for letting me know. Now, let's get you dressed again and put the laundry in to start.

Early Christmas and a Christmas Casualty

2009-12-07T23:25:00.000-07:00

About a year ago I had a post titled Christmas Casualties. Although it's a little early this year, there has already been a casualty this year. Really, it's to be expected. Samuel is 2. He likes loves to play ball.

Before you get too impressed, I haven't yet decorated for Christmas. I changed the fall wreath hanging on our front door to a wintery wreath (you know, to keep up appearances) and set out 1 of the 2 Nativity scenes I have. And a box of decorations has made it in from the garage. That, my friends, is where the problem is. See, the box brought in has the ornaments in it. Glass ornaments. That look like shiny silver balls. Laying right on top. Begging little hands to play.

You can imagine Samuel's surprise when this ball didn't bounce on the tile, but broke into a million little pieces. What a loss.

There was another minor casualty. Of the 2 decorations I have put out, I broke something else. The Virgin Mary's hand broke at the wrist. I can't blame the little man for that one, though. It was all mommy. But nothing a little super glue couldn't fix. Now that I think about it, super glue has been my friend lately. It fixed a snowman/"believe" knicknack that somehow hit the floor a few days ago. Again, no big deal. Superglue. My friend.

I've had an early Christmas this year. My dad has come to visit for a week. When he visits, things get done around my house. Walls get painted, it feels more like home than before. This year, I got new furniture. An awesome dining table and chair set from World Market to replace the temporary (and 6 year-old) table and chairs* from Ikea. A brown chair, dresser and side table was added to the guest room. Now my guests can put their clothes away and not live out of their suitcase or pile clothes up on the floor.

Thanks, mom and dad (papa and gagaw) for the early Christmas gifts! Everyone in this house really appreciates it!

* Want some red chairs and cushions for your house? See my craigslist post.

Happy Birthday Samuel! It's really potty time!

2009-11-10T09:40:00.008-07:00

First, I need to apologize to my readers, all two of you, for delaying my blog posts lately. I'm getting overwhelmed by not setting my priorities the way I need to. Things don't work the way they are supposed to when everything is equally important.

That being said...

My little man is TWO! His birthday was upstaged by the harvest festival preparations at the church so we postponed celebrating until the following weekend, when we wouldn't be competing with other plans for the fake holiday. After all, Halloween isn't really a holiday.

Since he loves Yo Gabba Gabba! we decided to have a Gabba party at our neighborhood playground. While I did plan some games, like Pin the Eye on Muno, a pinata, and some coloring pages, most were upstaged by the swingset and presents. We never even played, didn't even LOOK at my Pin the Eye on Muno game (it's awesome!). But it's OK because the kids had fun.

On his actual birthday I made a simple cake with his Yo Gabba Gabbas on the top (yes, they are from the Jack in the Box kids meals), even though I had wanted to do something more like MckMama's Rainbow Cake but I simply ran out of time.

However, for his birthday party, I DID have time for my version of the MckMama Rainbow Cake. It was, honestly and truly, easy to make. It took me a few hours but that includes mixing the colors and, of course, baking, which is like watching a pot of water coming to a boil.

I had intended to document my steps a little better but I had the help of a certain birthday boy in the kitchen so it's amazing that I even got the cake made. But, for those who asked, this is how I did it.

Using a recipe from the Cake Mix Doctor (the basic butter cake), I doubled the amout of cake mix I needed. After the giant vat of cake batter was prepared, I split it up onto 6 bowls. I started by measuring out 1 cup of batter in each bowl, but it ended up being about 2 cups of batter per bowl/color.

Yeah, I have a messy kitchen counter. I know. I used the gel food coloring because it would provide vibrant color without watering down the mix.

Because I don't have 6 round cake pans, and I wasn't about to buy 6 more kitchen items (see above picture), I bought the cheap foil kind from the store. They were 9 inch round with a scalloped edge, which did not make a difference. I buttered and floured all 6 of those and baked the cake in two cycles, 3 pans each time. Then, I stacked up all six in the refrigerator overnight.

The next morning I made the frosting (yum yum yum) and cut all the layers to the same height using a Wilton Cake Leveler. You can also use a knife.

Then I stacked the layers between the icing, measuring the icing for consistency, put a quick crumb layer on and put back into the fridge. About 45 minutes later, the cake came out, got iced for real, decorated, and taken to the party. No pictures were taken at the party, mostly because we all were busy (lame excuse) and mostly since the cake stayed covered due to flies (yuck!).

But, from inside my refrigerator, this is the final product. Well, half of the final product. I acknowledge that it looks like it belongs on CakeWrecks, and for that, I am very sorry. Please take my word that it really truly was, cute.

In other news, the hypertonic saline study is going very well. We've been participating for 1 month. Only 11 more to go! By participating in the study, it's made our process a bit different. We can't double up and do neb treatments while he is hooked up to the vest. Samuel's treatments take an hour now, twice a day. Even more if he fights it, since I have to talk him off the ledge every few minutes. If Samuel should need to start back on TOBI, that will easily add another 30 minutes to each treatment time, not easy for a 2-year old. But he is a trooper and takes it rather well.

Also big news---Samuel is using the toilet! He started showing an interest a few days ago, so I put him up on there and he peed! He's using it at every opportunity and is really understanding what a big deal it is. And even though I'm super excited about it, I'm trying not to push him too fast to use the potty exclusively. I don't want to pressure him and make it a bad experience. He will do it when he is ready.

I suppose that's enough talk about the toilet. And there should be enough pictures here to hold people over for a while (mom and dad!). Check back later for more updates!

Hide-A-Key

2009-10-08T12:11:00.005-07:00

The day was October 6. It was a Tuesday morning. Samuel's Grammy and Papa leave early in the morning. So early, in fact, that Samuel and Mommee are still in bed. But we are resting because today is the day we have to go see Dr. O at PCH for our check-up and get the details on the hypertonic saline study we will be participating in. It's a big day. Mommee is anxious about Samuel's weight...always a concern, especially since we got the "yellow light" at the last visit and half-and-half is now part of Samuel's regular diet.

Since the appointment was in Phoenix at 8:20 am and we live outside of Phoenix, I was planning on leaving our house around 7 am to allow for traffic delays. This also meant packing some easily accessible snacks for the little man.

I got up early. I got Samuel up early. We got dressed. We packed our stuff and I was loading all our stuff (the Mary Poppins purse, Samuel's diaper bag, snacks and stroller) in the car when the worst thing happened. I heard Samuel do his latest stunt: he locked the door. Not too quick to panic, I reached in my purse to grab my house keys.

The pocket was empty. I fished around, just knowing my keys were in the bottom of my bag. No keys. Just a cell phone (and a ton of other junk). I called Kevin, knowing he was already in Phoenix, about a 40 minutes drive away. Of course, he didn't answer his phone. Not one to beat around the bush, the message I left was "Call me. It's an emergency."

"That should get his heart racing. I'll teach him to ignore my phone calls!" I thought.

While waiting on my return phone call, I peeked through the window (the blinds just happened to be slightly open. I could see Samuel in small slivers). He was on his knees in a chair at the kitchen table, looking back at me. He was happy and waving, yet occasionally calling for me to come back inside.

I've never attempted to break into someone's house so I don't know the techniques of using a credit card to open a door. And, while I am resourceful, I couldn't figure out how to turn a hairpin to key. While I wanted to try those options, I just don't have the skills.

My phone rang. Kevin calling me back. I told him what happened. I think he chastised me a bit to which I promptly responded "Samuel is locked in the house, I'm outside. When we get him out, then let's play the blame game." Kevin told me to call the fire department, or wait on him to come. He was too far away, so I called my old friends at the Gilbert Fire Department. (Side-note: They should really consider a frequent caller club.)

It was more waiting and watching, secretly hoping for Samuel not to move, or at least to keep making noise so I knew where he was. The fire truck pulled up, followed soon after by a police officer who wasn't really sure what to do, but just felt the need to supervise. He tried to calm me by saying this was the second time in a month he had been on a call like this. The firemen worked on opening the door. They must have asked 10 times if the dead bolt was locked. "No. Just the knob."

There were some more questions for me:

How old is the child? He'll be two later this month.
Is he hurt? I don't think so. I haven't heard him cry.
Where is he? Um, he's in the house. I don't know where in the house because there are these walls in the way.

Then came the shocker. One of them asked me, no lie, "Are there any other older children or adults in the house with him?" I think I was so dumbfounded, I really wanted to say "Why would I have called you?" But I just said "No, it's him and the dog."

Oh, the dog. Lucy was going crazy. She is very protective anyway and she didn't understand these people were breaking into my house because I had asked them to. *sigh*

They opened the door. Lucy was there to tear their face off, I mean, greet them. Samuel was sitting in the floor with his pants around his ankles. Everyone was happy to see everyone. We thanked the firemen, went outside to see the truck, then went back inside to regroup.

Since the whole ordeal had taken longer than I had cushioned the schedule for, I called the CF nurse coordinator to let her know we would be a little, or a lot, late. We decided it would be best to just reschedule since their schedule was packed that day and there really wasn't any wiggle room. Fine by me. I needed to go get a new door knob for my door! All in all, it was much more action than I cared to see by 8:00 am. And without any coffee.

Still alive

2009-10-08T11:02:00.002-07:00

Absent. That's me lately.

Dear Husband's parents were visiting. So any and all free time was filled with entertaining and traveling to the Grand Canyon. But I won't make more excuses. The truth is:

I didn't want to. *gasp* I know. Who knew a woman would not jump at the chance to share her opinion?

I just didn't want to. But now I do and I'm thinking about what I want to talk about. So give me a second, OK?

A Must Read

2009-09-29T10:24:00.003-07:00

If you spend any amount of time with a person with cystic fibrosis, this is a must read. It should be mandatory.

MONDAY, SEPTEMBER 28, 2009

Caution: Harmful Fumes Ahead (for CFers)
On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.

I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:

-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.

-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.

-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.

-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.

These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.

Please visit www.runsickboyrun.blogspot.com to read the comments left. Very helpful information!

Five for Friday - Memories

2009-09-11T08:00:00.003-07:00

Eight years ago today tragedy struck our nation. In some ways, it seems like this was just yesterday. In others, it seems like a lifetime ago.

1. I was in Anatomy & Physiology lab when a classmate told me what was happening. We were especially troubled since our college campus was neighboring Ft. Detrick. Our teacher clearly didn't understand the magnitude of the happenings. At first, she refused to dismiss class because she was concerned when we would make up the missed class but quickly relented when the administrator further explained.

2. Dear Husband and I were not Dear Husband and wife. In fact, we had only been dating for a few months. He was on vacation in Virginia, but drove up to Maryland to be with me. That was really nice of him.

3. On my way home from school, traffic was a mess. Phone lines were crazy busy. I didn't know where to go or what to do. I went home and noticed flags were already at half-mast.

4. Our church had a prayer meeting that night. I can't ever remember so many people showing up for a prayer meeting. I don't think I've seen so many show up since, either.

5. So many questions. So few answers. Such a moving day. Eight years later, still sobering.

In remembrance of those lost in connection with that day...

Thankful Thursday

2009-09-10T18:55:00.006-07:00

Well, I've just about missed Thankful Thursday. But it's never too late to be thankful. So, here we go:

1. Applebee's Boneless Buffalo Wings (Why are my thankful items food?)

2. Munchkin Re-Usable Microwave Sterilizer Bags - Even though we are past the need for clean bottles, these bags come in very handy for sterilizing nebulizer parts.

3. My family and friends. They are the best support system and I appreciate them all.

4. My new (to me) MacBook Pro.

Let's go back.

2009-09-07T12:04:00.007-07:00

Whenever I stumble upon a new blog that I think I might be interested in, I always like to find out how it is relevant to me. In an effort to make that easier for some new followers (welcome!), I'd like to start by giving a brief run-down on Samuel's story.

I suppose the best place to start would be at the beginning. Because I believe the beginning is before birth, I'll start there. You know what? I'll start with before conception because that's really where the story begins.

Dear husband and I had talked for a while about starting a family when we lived in Maryland. After going back a forth for a few months whether it was the "right" time or not, I announced that it was, indeed, the right time because I said so. Fast forward 1 year. We moved to Arizona. Hadn't used any form of birth control. Still no baby. No sign of a baby. Nothing. This shouldn't be. So I scheduled an appointment. We were just going to have some tests done. Without giving away everyone's business, and since this is the clean version, we were told sometime around Feb. 13 that we were welcome to keep trying but the chances of me getting pregnant the routine way would be very slim. Closer to none.

In a way, I knew this. I knew something had to be wrong. But, we figured it was in God's plan, so we took the news, took our options, and went home. We were going to pray and talk about our options and make a decision later.

The next weekend was my birthday and my parents were coming to visit, as we had moved to across the country a few months earlier. They may or may not have known of our plans, but we decided it would be a good time to tell them they might not be getting any grandchildren from us. They were understanding, supportive, and clear that whatever decision we made would be the best one. I remember my dad said, "You don't have to be a mother to be mommy and you don't have to be a father to be daddy." This difficult, yet easy, conversation took place on my birthday, Feb. 22, over dinner. It was a Thursday. Earlier that day, on a whim, and since babies were on the brain, I took a pregnancy test since it was about that time and I thought a positive test result would be the best birthday present ever! Of course, not surprisingly, the test was negative.

Friday came, but didn't bring my anticipated monthly visitor. By Friday night, I was getting a little suspicious. Saturday morning, when there was still no sign and officially late, I took another test. I was letting it "simmer" while I brushed my teeth. I didn't have my contacts in or glasses on my face, so as I was brushing (foaming at the mouth), I was squinting to see any results as they appeared. I thought I was going crazy so I called dear husband (DH) to come check things out. As fast as I could, I spit the toothpaste out of my mouth and scrambled to find my glasses while DH peered over a little stick. He said, "I don't know, E. It looks like 2 lines to me." Indeed. There WERE TWO lines on the stick and we were going a little nuts. My parents were still visiting. My mom had been asleep on the couch downstairs so we raced downstairs, waving the urine-soaked stick in the air. My mom quickly figured out what was going on. My dad, hearing the commotion, came downstairs but was a bit confused as to why we were all looking at a pink stick and crying. Finally, my mom explained what it was. Already, we had beat the odds. You can imagine a few weeks later, visiting the same doctor who had said "good luck" and making him eat his words. It was a great feeling.

Pregnancy was smooth. We opted for no prenatal testing since a) we thought we were low-risk. No birth defects in either family. No diseases, we thought, on either side and b) it wouldn't make a difference anyway. This baby was so prayed for. When the nosy people asked "Were you trying?" I liked to say "It was hoped for but unexpected." (BTW - Don't ever ask that. It's NOYB.)

Samuel was due on October 30, 2007. Then he was due on October 28, 2007. On Saturday, October 28, I dressed up as a bag of Jelly Belly jelly beans for our church/community harvest party. I was so big it just seemed to fit. I won first place in the costume contest. I think they just had pity on me for dressing up when I was due to give birth that day.

On Sunday, October 29, my dear friend Audrey came over and took pictures of my big preggo belly. It was a nice way to pass the time.

On Monday, October 30, someone (who will remain nameless) called my phone at 6 AM to ask me "Have you had that baby yet?" Um, no. And thanks for waking up a pregnant lady. Thanks a lot. Since I couldn't go back to sleep for some minor contractions, I went to Chick-Fil-A and got some chicken biscuits for me and DH and a chocolate milkshake for Samuel.

For most of the rest of the day, I napped on the couch and waited. Didn't have any of the minor contractions I had experienced that morning for the next several hours.

I don't want this to be really long so I'm going to pause here to allow for reflection. Or maybe just a break. Stay tuned for the rest of the story.

Five for Friday - Ways to spend the day off

2009-09-04T09:45:00.008-07:00

Recently, I have been thinking about incorporating a theme to my blog instead of just the usual brain dump on a random day. I'll probably still have a random theme from time to time, but today, it's Five-for-Friday. And today's subject is my five ways to spend the day off with my son, since that's what Friday's have been as of late.

1. Get a late start and take our time with morning treatments. *Note: This is not a good plan. It's best to do this early when Samuel is still sleepy and less willing to fight. Like here:

2. Make pancakes for breakfast (which is turning into brunch. See #1.)

3. Keep my promise to go to the splash pad at local shopping center. Hopefully the big bully kids are all in school. HA!

(Thanks to Lucy's mom - the OTHER Lucy's mom - for sharing the high-calorie popsicle recipe! Samuel loves them!)

4. Finally put my pork roast in the crock pot so I don't have to scramble to make dinner tonight.

5. Clean up the muddy paw prints through my house. Lucy insisted on going out late last night after it rained. Since our back "yard" is just mud, this wasn't a good plan.

So there you have it! The first installation of Five-for-Friday and even a five picture bonus!

Have a blessed day.

Thankful Thursday

2009-09-03T10:44:00.002-07:00

In no particular order:

1. Egg whites in a carton

2. Instant oatmeal

3. Super Glue

4. Rotisserie Chicken

5. Johnson's Bedtime Bath

6. God's love

7. 1 little blond-haired boy

8. My house

9. My job - and the ability to work

10. Coffee

*this could change in 5 minutes.

Why socialized health care is like coffee….sorta.

2009-09-02T17:29:00.002-07:00

While standing in line behind my co-worker for access to the one coffee maker in our office, I had a thought: I hope I like standing in line.

A few months ago, the powers that be decided we should purchase one of those fancy single-cup coffee makers instead of springing for gourmet coffee-shop bought coffee every Friday. This way, each of us could get what we wanted every day and save the company some dough. Sounds like a great plan. And it is a great plan because it’s coffee and I like coffee.

There are just a few issues.

1. The quality just isn’t the same. Nothing tastes better than sipping a fresh, custom-made, toffee-nut Americano with a touch of half & half and a Splenda from a cup with a green logo and topped with a white plastic lid. Nothing. Yeah, the fancy coffee maker provides fresh coffee. I get an adequate cup of hazelnut-flavored brew, and am provided with enough Coffee-Mate and Splenda to accommodate my particularly sweet flavor preference. It’s good enough to get me through my morning.

2. When we got the fancy coffee maker, we realized we could brew coffee, tea, and hot chocolate with our machine. The one catch is, we had to buy all the coffee and cream and sugar and Splenda and the new machine. Quite an investment for our little company! We have to store it all too. When someone wants some hot chocolate, hopefully we have it in stock. If not, we have to wait for the hot chocolate to become available…sometimes up to a week for delivery! When you want/need hot chocolate now, getting it a week later just won’t do!

3. Really, it’s just one machine. We bought one machine. But early in the morning, when people have left their personal coffee at home to drink the “free” (to them) coffee at work, there tends to be a log-jam at the coffee machine. It’s not really a big deal, it IS only a cup of coffee, but sometimes, you just can’t get that stuff fast enough. Maybe we should buy another machine for those times when we are wanting coffee at the same time, but that’s too much money and we don’t really have the room for it anyway.

4. Because I am the keeper of the order forms, I get to dictate what kind of coffee, tea, or hot chocolate we get. Sure, I can be nice and order what other like, but when it comes down to it, I order Daybreak Blend for everyone because it’s MY favorite and I think it should be his or her favorite too. What? You want TEA? Um, I’ll have to see if it’s in our budget to order another box of tea. Sorry, it’s not. Besides, you got your preferred flavor of tea last week, so let’s give those soda drinkers and chance to get what they want. Oh, that’s right, this machine doesn’t serve soda. Well, it’s still their turn to decide. You ran out of votes last week.

5. Oh, the options. Before the fancy coffee maker, I used to see those white cups with green logos nearly every day. Sometimes, two or three a day. But now, I go about a month before seeing a lonely green circle logo. I feel for the people who work at the store of the green logo because we are taking money out of their pockets. But are we? We still have the OPTION to go to the gourmet coffee shop with the green logo. In fact, it’s less than a mile away from the office. But why stop there and pay for coffee when I can get it for free at the office? I’m not personally paying for the coffee in the office. It’s the COMPANY coffee! Then I think: What if everyone got on of these fancy coffee makers in their homes and offices? What if it was required to drink some sort of brewed beverage every day and you could either get it with the coffee maker, or get it at the gourmet store? I know, for my budget, I’d choose the coffee maker. I can’t afford to go get a white cup with a green logo every day. How long before the option of going to the gourmet store wasn’t an option? They can’t operate if everyone chooses the fancy coffee maker. They have no income.

So how is this like health-care reform? Well, the quality of health care just won’t be the same. People won’t value it because they have no direct financial responsibility for it. They want a cup of coffee, I mean, they want to see a doctor, they just show up, stand in line, and get what they want. Say someone has a caffeine-deprivation related headache because they had to wait to long at the fancy coffee machine. They could demand to see a specialist for that headache because it COULD be a tumor.

The wait time would be extraordinary. There won’t be enough doctors to go around. Is that a good reason for no health-care reform, no. But it will happen. By some estimates, the time it takes to choose a primary care physician would go from three months to six months. That is not acceptable. What if the first choice doesn’t work out? Can you really wait six months to a YEAR to see a doctor?

With an impending government monopoly on health-care, it won’t take long until the check-writer, the government, dictates what we get. Just like me being the lone orderer of the coffee, some fat politicking slob will be telling me what they will and will not pay for my care. Next, they will be telling me what tests I have to have done and what choices I have to make to be fiscally responsible. Um, no. Unacceptable. I can see it now. Mandatory genetic testing on the unborn to see if they deserve life. If all is clear, great. They won’t be a drain on society. If there is a problem, then mom must have an abortion because no doctor will treat the baby. Talk about not treating a preexisting condition!

Having another option won’t be possible. Just like if everyone got a fancy coffee maker, gourmet shops will be put out of business, that’s exactly what will happen to private insurance. If we all chose the cheaper option, a logical decision, how long before that is the ONLY option? Not long, I promise you. And if you think the fancy shop was founded by a greedy old man, so be it. This is America. He had a dream. He saw an opportunity. He took a chance and he made money. Lots of money. Good for him! Go capitalism!

So, stick with me. When the gourmet shop goes out of business and we are all ordering our fancy coffee-maker cups, we’ve just given the maker of the cups the market share. They can now dictate what coffee cups are available and which are not. AND they can set their own price on the fancy coffee cups because they are the only place in town (or the internet) to get the fancy coffee cups. Should my favorite, Daybreak Blend, become very popular, what do you think will happen? Of course, the price will go up! Suddenly, I’m presented with two choices. I can either pay whatever price they demand for Daybreak Blend, or stop drinking Daybreak Blend. When I stop drinking Daybreak Blend because I don’t want to or can’t pay, then what happens? The maker will either lower the price, or say there is no demand for that particular flavor and no longer offer Daybreak Blend, further dictating what I can or can not drink. My choices just went down. It won’t take long for the other less popular flavors to fall off of the offerings menu and the cycle continues.

But enough about coffee. We all need to drink more water anyway. THIS is something no one can control the rationing of. Oh, wait, yes they can.

*SPECIAL NOTE: I love the company I work for and I'm grateful they would even offer the gourmet coffee once a week or the fancy coffee maker and supplies any time I choose. Any points made here are just for illustration and are not to be misread as disgrace, disgust (at the coffee situation) or any other negative thoughts or feelings toward the current coffee situation at my place of employment. THANKS!

Vegetables? FINALLY!

2009-08-25T22:26:00.004-07:00

It's finally happened. Samuel wanted to eat veggies! After months and months of putting the on his plate/tray and watching them end up in Lucy's mouth (Lucy is our dog), he was shoveling them in like it was going out of style. Of course, they were smothered in butter. How do you eat YOUR veggies?

Some other quick tricks I've learned recently: Grating carrots into mac N cheese is a good way to sneak in some veggies, which, apparently, I don't have to do anymore! We really like Easy Mac because it's a great portion size for Samuel. Husband and I don't need to be eating mac N cheese as much as Samuel does. The cool trick, though, is to add a little heavy cream to the cheese mix. It makes the cheese sauce creamy, obviously, but not watered down. It's a great way to add extra fat and calories. I'll share more tips as I come across them.

The past few days, Samuel has been learning something new. Seems like it's been faster the past few days. Friday, he came home saying "You're BAD!" and pointing his little finger. I'm pretty sure he's seen his father say that to Lucy a time or two because we DO NOT say that to him. Miss Amy does not say that to him. Her words for unacceptable behavior are "That's naughty" My choice: "That's not nice" or "We don't do that." It makes sense because he's mostly telling the DOGS they are bad.

By Sunday, "You're BAD!" turned into "You! You're BAD! Alright?" This of course, was met with, "No, that's not alright. I'm good!" But, like I've heard, you can't reason with a toddler. This is still true, in case you were wondering.

Did I mention Samuel received a gift this past week? He brought home a Mr. Potato Head and was delighted to play with it. I could hardly believe my eyes when he was still sitting in the floor playing after about 10 minutes. And it was at that moment Mr. Potato Head went flying across the room. It does sorta look like a football...

In my last post, I mentioned my guest blog and compared to time when I had to give a speech. Now, for those who have asked, it was NOT a coincidence that I did NOT mention the topic of my speech. Those who know me and my family may know it already. But those who don't, well, you've already got enough information about my perspectives. There's no need to discuss anything else controversial.

You are in the right place

2009-08-21T09:15:00.005-07:00

Recently I was taking a critical look at the blog and it was starting to bother me that everything was so, how do I say it, so...Uhhggg. It was brown. Very brown. Not really the right color for the mood of this blog.

A few weeks ago I declared I was taking a stand. While it may appear I haven't been doing much by the looks of the blog, I assure you, things have been brewing.

I was asked to guest blog for my friend Ronnie at RunSickboyRun. He recently updated his format to include a Sound Off Saturday and is showcasing some different perspectives on the issue of health care reform. You should pop over and take a look. And leave a nice comment for me! :)

Honestly, this has been a HUGE step for me. I normally don't get involved in any issue that is a bit controversial because I hate confrontation. In fact, during my public speaking class in college, one assignment was to take one side of a contentious topic and explain why we held those opinions. I really didn't want to participate in this assignment. This wasn't debate class, for goodness sake! Of course, it was required so I did, but it required taking some risk which I wasn't comfortable with. I just like to keep my opinions to myself than have confrontation. BUT, in this case, Samuel can't speak for himself; he relies on me to speak up for him and keep his best interests in mind.

What else is happening? Oh yeah, I'm going to D.C. I feel like the real life version of Legally Blonde 2. Somehow or another, I managed to get invited to participate in a press conference on this very topic. I'll be sure to post more details as I get them. Details such as time and place.

If you are coming here to check on Samuel, well, this is a bit of an update. Wednesday I got the call that I have been able to avoid for the past 21 months. Samuel's last throat swab at clinic grew a scant amount of pseudomonas. Today (since it's 1:45 AM and I'm still up with Samuel) we start Cipro and TOBI and he will be on those for the next two and four weeks, respectively. We've been very spoiled by our MDI with spacer instead of neb treatments. The new drugs have me bummed, for sure, but strangely enough, I'm more concerned about the mask/neb treatments on Samuel's mental well-being.

Thanks for checking in. I know I don't have pictures but that is because I'm on a new computer and have NO pictures of Samuel here. Sorry. Maybe by my next post I'll have it together. Maybe.

When it really comes down to it

2009-08-17T22:11:00.004-07:00

...we are so blessed. I've been thinking lately about what a miracle Samuel is. He is truly a gift from God. There is no other way around it, he's a miracle. It's just another benefit that he has CF.

A benefit? What, you say? Surely, Mrs. Samuel's Mommy, you can mean that. Well, I do. See, we have the opportunity to teach others about all kinds of things like, faith and trust, being obedient, and mostly, being thankful for what we have. On Samuel's last clinic visit, I was out of town. But every time we go, I'm reminded of how fortunate we are. We usually have to talk about poop and get new instructions on how to help Samuel get those cherished thigh rolls. We might get a new prescription for a new drug Samuel hasn't been on before or information about a hypertonic saline study.

Whatever it is, it can sometimes be overwhelming.

BUT, when we leave, I ALWAYS see another little boy or girl at Phoenix Children's Hospital who doesn't get to go home that day. Sometimes they have a feeding tube and are in a wheelchair. Sometimes they've endured chemo and have lost every strand of hair. It always touches my heart because on THAT day, I get to take my baby back home. We are only there for a visit that day. What a blessing.

Thank you, God , for trusting me and Kevin with this opportunity to be a light for others who don't know you. While admitting we are far from perfect, help us to be a good example. Thank you for this little boy you have given us because he truly is a miracle and a gift from you. Samuel is yours. And thanks for letting me hold him for just a little while.

still working...

2009-08-06T22:24:00.002-07:00

Just wanted to let you know, I'm working on this healthcare thing. I'm a bit busy right now but things are cooking.

I've been invited to participate in a press conference in DC next month on behalf of families just like mine. It's an honor to take a stand for what is good and right for my family and I'm not ashamed to be counted.

I'm taking a stand. Join me?

2009-07-28T17:16:00.000-07:00

I decided today that it's time for me to take a stand. I am not going to sit here, with my little man, and wait for this health-care reform to happen without putting up a fight.

While I collect my material and do a bit more research, please read this and think about how it will change the way you use the system you have today.

If you would like to share information with me, please feel free to leave a comment.

Thanks. There WILL be more on this...

The results are in

2009-07-27T12:28:00.000-07:00

and, to quote my doctor, "There is no cancer here." I don't need to see him again and I don't need to do anything else that requires a smooshing-type action for another 10 years.

The best "get lost" I've ever heard.

Samuel is getting ready to grow. He has been eating a LOT, even breakfast which usually doesn't interest him. He slept for 13 hours last night - straight through. I better start shopping for some new clothes for his skinny little rumpus.

And! HUGE NEWS!!!

Samuel peed on the potty today! We haven't officially started potty-training but Miss A is helping him. I think I will spend most of the day Friday and Saturday training us to go every 30 minutes. Fun fun!

How the Kelleys are falling apart

2009-07-21T16:35:00.001-07:00

It all started last Wednesday night.

Samuel's room was just painted a beautiful blue. I (his mommy) was rearranging the furniture. Since things were a little out of order (typical in our home), Samuel found a bar from his pack-n-play and was playing with it, putting it in his mouth (again, typical). It's about 18 inches long, or so. Unfortunately, Samuel got bumped and the bar got jammed in the roof of his mouth/back of the throat. He bled for a while, we prayed really hard for a little while, called 9-1-1. He had a big gash so we ended up taking the ambulance to Banner Pediatric ER. He didn't get stitches but they did tell me to keep it extra clean. And to do that, have him gargle with some water/hydrogen peroxide, but DON'T LET HIM SWALLOW IT. And how do they suggest I do that? "Just dab some of the mixture on there with a Q-Tip." Riiiiight. OK. I should have asked them to show me. That would have been funny.

This is how it ended...finally: (just not quite so, uh, side-ways)

After a few days, his mouth has healed to almost as good as new. However, he since developed a cough, possibly unrelated to the gash, possibly because we didn't keep it clean enough. But that too, however, is just about gone. He's back to himself, as evidenced below: (sorry they are so dark)

Playing the pot:

Playing the pot Part 2:

Couch Diving:

Meanwhile, my procedures have gone off without incident. The needle biopsy revealed nothing we didn't know already: I have fatty tissue in my breast. It's a shocker, I know. To get to the bottom of it, we just decided to take the lump out, no matter what it was. That was done on Friday morning and now I get to wait yet another week for them to tell me something else. Friday was a nice day of rest with me sleeping off a demerol-induced haze. Demerol makes me not even know I have a breast, let alone that it was cut into earlier in the day. As the demerol wore off, I down-graded to Vicodin. I thought it was somewhat sad that Samuel and I were on Vicodin at just about the same time. He got some for his bar-in-the-mouth incident. Recovery has been pretty quick and seems to be going fairly well.

This is completely off the subject, but I was just thinking... I passed a place today that was called Valerie's Hair Creations. I wonder what Valerie creates out of hair? What kind of hair does she use? Sounds pretty gross.

A few weeks ago we had to have a plan B while Miss Amy was out of town. Our summer Plan B means Miss Amy's sister, Miss DJ, comes over. She frequently helps so is familiar with Samuel and his special needs. While at our house, she also took some amazing photos of Samuel. She is very talented!

Blowing on french fries with daddy:

Saying "cheese" with his first ice cream cone!

A long weekend

2009-07-07T15:47:00.003-07:00

It's been a long weekend. Not just for the holiday, but other reasons too.

Let me be honest and say, I wasn't going to talk about this, but there is probably someone else who is or will be doing this at some point in their lives. At any rate, here goes with the true confessions:

I'm 30. (Whew, that wasn't THAT bad!)

A few weeks ago, I found "a lump". The kind of lump women don't like to find. I didn't think it was really bad, but I just wanted to hear someone, who is closer to an expert than I, tell me it was nothing. So I scheduled a doctor's appointment.

I went in for some screening tests and mammogram. Let's just say, this isn't something I would enjoy doing regularly. Again, I'm just waiting for them to look at the results and say "this isn't anything you should worry about."

Instead I hear "This is abnormal and we highly recommend a biospy."

Me: not prepared.

So what made the weekend so long was having a biospy scheduled for Monday, yesterday. And let me just say one thing: 30 is too young for someone to have TWO mammograms within a month!

I'm still waiting for the latest expert in my life to tell me this isn't something to worry about. I'm just remembering, however, I know the Ultimate Expert and He has reminded me that "He was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was upon Him, and by His wounds we are healed." It will all be OK.

Let's talk about Samuel.

He is doing great. I can't believe I let him play in McDonald's Playland (a.k.a. GermLand) yesterday for longer than 30 seconds. I CAN believe, however, than I pretty much hosed him down with hand sanitizer every time he came out and before we left. It was a friend's birthday, so this special occasion will probably be the ONLY time we will be in there. I was very impressed with his fearless ability to climb and stand up to the bigger kids there playing with him.

This is the ONLY hat he will wear for longer than 3 seconds. It's so cute!

A few weeks ago I had decided to give up trying to keep him from getting the pots and pans out every time we were in the kitchen. He gets them out, I put them away, it's this fun cycle we have going. I decided I don't care that I have to wash them when I want to use them. But Samuel surprised me. He took them all out play while I was working on other things. A few minutes later, I looked down to make sure not to step on a pan and, to my surprise, there weren't any in the floor. Figuring he had taken them all to the other room, I went around the corner to find his trying to close the cabinet door. He had put all of the pots and pans BACK in the cabinet where he found them, he just couldn't get the door completely closed because there were just a few handles sticking out, as you can see below. I'm so glad my requests to "put it back where you found it" haven't COMPLETELY fallen on deaf ears.
Speaking of the little munchkin, I better go take care of him. My evenings are getting shorter and shorter, it seems, since he's napping less and less at Miss Amy's.

The coolest kid in church

2009-06-24T17:32:00.002-07:00

Playing games with girls. Oh, they do learn young, don't they?

whoever said little boys are like old men...

2009-06-23T15:52:00.005-07:00

...had it right. Here is my little old man, crying because he can't reach the fruit and yogurt parfait. What's that on his feet? Why, it's white socks and blue crocs!

These crocs were purchased for Samuel's friend, Hudson, about 2 years ago. Hudson wore them and wore them and wore them some more and when he finally grew out of them, they were passed on to Samuel.

We discovered them in the closet this morning and since Samuel has been obsessed with shoes lately (he wants to wear them with his P.J.s to bed!) I put them on him. They, of course, were too big, but he insisted on wearing them. I put the socks on thinking, "I'll just put his sneakers on when we get downstairs" then the crocs went back on his feet. He was so proud of them, he would NOT take them off and I just figured is wasn't a battle I wanted to fight. He won.

White-socks-with-sandal-wearing old men of the world, please welcome the newest member to your club: Samuel Kelley.

thankful

2009-06-12T10:25:00.003-07:00

Just discovered a saved draft from last week. Thought I'd pass it along. It's still true, so why not? Just a little bit of old news...

I'm am so thankful it's Friday. This has been a busy week! Up early for boot camp, which has been a great release for me lately, then up late with VBS at church. And we haven't even been every night; only 2. But it's made those 2 days very long!

Kevin (DH), has been to VBS more than I have but we all went on Wednesday night. It was great! The team who has organized has really outdone themselves again this year!

That being said, Samuel is too young for VBS :( . He just doesn't understand the games, or even staying with the group he is supposed to be with. I guess there is a reason the youngest kids they register are 5. hmmm...

Without going into too many details, our Wednesday night trip to VBS was cut short. Little guy was very sleepy and had about 3 head bonks too many (again, touching on the point, he's too little - people didn't see him behind doors and plowed him down). So we left. On the way home, while he was resting/recovering, I was thinking about how it will be in a few years when he IS old enough to enjoy VBS along with all the other crumb-cruncher, germ slathered kids there. How will it work when snack time comes around and he has to take enzymes before snack? Am I going to have to provide applesauce and a tutorial on administering meds to my child just before snack time? Maybe he'll have a buddy to help him every night.

All of this reminds me of the book we were given on diagnosis day, talking about experiencing "acute grief" from time to time, like when seeing a chubby baby in the grocery store and grieving that your child has a difficult time getting those chubby thighs. Now, every chubby-thighed child I see, everywhere, brings on those thoughts of "Samuel had chubby thighs for a day or two." I guess VBS brought on some acute grief the other night.

Anyone else ever experience this? I'm sure other CF Mommees do from time to time. How do you get through it?

A big weekend

2009-06-08T16:25:00.006-07:00

What a great weekend to follow Samuel's test on Friday!

First, Samuel's test on Friday went very well. There have been improvements since our last IPL 10 months ago. Everything is "normal" and we couldn't be happier. Well, we couldn't be happier with the results. All celebrating ended with the ice bath Samuel got when we were trying to wake him up after the test. When he doesn't want to wake up, just leave him alone! :)

Also last week, Samuel's 18 month check-up (a month late) complete with pokes. 3 pokes and he cried longer this time than ever before. Not just crying from the pain but from a broken heart and hurt feelings. I felt bad for him.

Samuel hamming it up at the doc's office while we were waiting:

This past weekend we had a first. Samuel's first hair cut. We've been getting lots of grief over his mullet but, really, I don't care what others think of his hair. Clearly, since we haven't cut it for the last 19 months. But it was getting very long in the back...so long it was getting tangled up all the time. It looked like he had bed-head all the time. And I will say, if it had been a little curlier, there is no way a pair of scissors would have touched his head. All in all, he did great! He wasn't too hip on the idea of being buckled into the fire truck he was sitting in, but he got over it pretty fast. He was very comfortable in the place, playing video games and all the other toys they had there.

Admiring himself in the mirror.

In the fire truck. Complete with a cape.

In: a baby.

Out: a little boy.

This weekend he also got a hold of a pen. Nothing new, but he has never used it before either. I wouldn't let Kevin wipe his leg off until I could take a picture.

Samuel has been learning all kinds of new stuff lately! Seems like I say that every time. But it's true. At his well-baby check, they were asking how many words can he say and does he make any animal noises yet. At the time he didn't but that changed in about a day. By the end of the week he was barking like a dog. "Samuel, what kind of noise does a dog make?" "Woof Woof Woof!" So cute. At a friend's house, he was chasing their little dogs around, barking at them. By the end of the night, he was barking at their cat too. Fine by me, I don't care for cats so much. If a barking toddler keeps them away, bark on!

As for the words he says, well, it's not too many. However, he is learning how to communicate in other ways. I will whole-heartedly encourage new parents to teach your baby sign language. Samuel is a signing sponge! He signs all kinds of words: more, eat, drink (while saying "juice"), candy, please, thank you, cheese, airplane, ball, bird, and his latest, shoes! (Definitely his mother's son).

Eating grilled cheese. Well, eating the cheese out of the middle...while standing up in the high chair. A good shot of his crazy hair.
My brother, Andy, his lovely wife, Morgan and baby Will. And cousin Samuel.

Not sure whose kid this is that fell asleep at Olive Garden.

Thanks for checking!

It just hit me

2009-05-26T10:38:00.004-07:00

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!

2009-05-06T16:44:00.005-07:00

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

2009-04-22T08:33:00.001-07:00

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

2009-04-19T16:35:00.003-07:00

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?

2009-04-07T21:45:00.011-07:00

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

2009-02-25T14:00:00.003-07:00

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!

2009-02-16T21:17:00.007-07:00

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

2009-01-31T12:32:00.008-07:00

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?

2009-01-24T21:59:00.004-07:00

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

2009-01-10T13:34:00.013-07:00

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.

All I want for Christmas...

2008-12-23T22:42:00.012-07:00

I know it's been a while since I've posted anything. We've been busy with Christmas coming (tomorrow!) not to mention chasing the little man around. And cleaning everything up.

The other day we had Spaghettios for lunch. He insists on eating his food with a utensil in hand. He might not use it, but he has to have it. Most of the time, he has to have 2 or 3.

A week ago he woke up and we were at Miss Amy's house when I noticed his eye. It was goopy and crusty but not pink. He'd had a runny nose for a little over a week but I thought it was closely related to the 2 front teeth he has coming in, just in time for Christmas. But the eye thing had me a little concerned. The Dr. wanted to see him so later that morning we went to visit the pediatrician. Turns out Samuel has an ear infection in both ears! Yuck! For 13 months we have avoided any ear infection that Kevin and I seemed to get so frequently when we were his age. But we can avoid it no longer. One lesson I have learned from this latest round of antibiotics: The strawberry flavoring is Samuel's favorite so far. He's not into the bubble gum flavor.

This evening we decided to take Samuel to see Santa and have his picture taken with the man in red. As it turns out, Bass Pro Shop was hosting the big guy and giving away free pictures with him. I was a bit fearful of the potential disaster this was going to be, seeing so many photos recently of children Samuel's age crying through the whole experience. But, as stated so many times before, we have a trooper on our hands. He was a great little guy, smiling and even waving goodbye!
While we were at the store, we thought we could play a little...

A little random, but this is video of Samuel eating lemons for the first time.

Last week we were blessed with some early Christmas blessings when my dad came for a week. While he was here he offered to help make my house more of a home (thank you!) and he had some help in the process. What a good helper! And what a fabulous red wall! Thanks so much grand-dad!

Laughing and playing with Grand-dad. There are some of the sweetest sounds in this video! And it's cute how he tries to copy what he sees.

And, the most requested video of late: a longer video of Samuel walking.

Have a very Merry Christmas!

Christmas Casualties

2008-12-17T21:22:00.002-07:00

As of Tuesday, December 17, there have been casualties of the Christmas variety in our house:

1 Baby's 1st Christmas hand-painted glass ornament

1 Christmas Tree

I have to go buy some super glue to try to repair the ornament. And our Christmas tree will probably be leaning against the wall until after Christmas when trees are marked down. Imagine, Christmas morning with a leaning Christmas tree!

Note: Invest in a gate to protect the Christmas tree and its shiny ornaments. And, even if you do put the "touchable" ornaments on the bottom for little hands to play with, those same little hands like to pull and will pull a tree down. This pulling down of the big Christmas tree makes all breakable ornaments up higher on the tree just further from the floor and quite unsteady.

What you've been waiting for

2008-12-12T23:16:00.004-07:00

Buckle your seat belts. It's going to be a wild ride.

Another, just for fun. Down the stairs!

It's a Boy!

2008-12-03T17:29:00.003-07:00

Samuel is expecting a cousin in mid-April and we are delighted it's going to be a boy! Samuel can't wait to perfect his new tricks like spitting and throwing food so he can teach to his cousin. Congrats Morgan and Andy. We are all excited and know you are too.

We (sans Kevin) had the pleasure to go to Maryland for Thanksgiving. Some things just aren't right and Thanksgiving isn't "Thanksgiving" unless it's at my parent's home. It was nice to get to visit with my brother, sister-in-law, and my grandparents for a few days. Samuel was spoiled, it doesn't take long for these things to happen. It was very cold (to me). I knew it was chilly when stepping off the plane, I could see my breath.

The trip there was bearable since the flight was barely half-full. The worst thing that happened: Samuel knocked his applesauce onto the floor, including enzymes, which splattered up and onto the bag belonging to the guy sitting next to us. And on his pants too. So embarrassing. The flight back, Samuel fell asleep in the airport and stayed knocked out for MOST of the flight. The last 45 minutes he woke up and realized he needed to make up for lost time. He wanted to crawl down the aisle, which was not acceptable. When that couldn't happen, he screamed, became a noodle, and tried to get down. By COMPARISON, he was excellent. By my standards, he's had better days.

..and he's off!

2008-11-23T15:05:00.006-07:00

Samuel is getting brave! He's walking with one hand on the couch or the other day he was walking while holding on to my hand. Some people are encouraging Samuel to just get up and walk. These are not people who live in this house or would otherwise have to chase Samuel around the house/church/grocery store/neighborhood..whatever place would apply. But he has been standing up while leaning against the couch, face out, and it really won't be too much longer.

Last week I accidentally erased the video of him walking with his tractor. I was able to get new video of that yesterday and am posting it before I erase it this time! This is 2 minutes of him going back and forth with his tractor. He will do this for a lot longer than 2 minutes. He goes and when he can't go straight anymore, he walks to the other side and goes backward. Back and forth, back and forth.

Last time I wrote about when I dropped Samuel at Miss Amy's, I said he couldn't have cared less that I was leaving. This past Friday I dropped him off and he actually waved to me as I was walking out the door. Next week I am expecting him to get out of the car and carry his own stuff in and say, "Please mom, you don't have to come in." And then the week after that he will be driving himself there.

He's mad because I won't let him have the camera. I should just give it to him and let him finish destroying it. The buttons have somehow gotten sticky and now I have a rough time turning the silly thing on. Thankfully, Costco has some on sale now...

Still mad...If you read lips, you may be able to tell he is saying something like "nooooooo" or whining something similar.

We are getting ready to go to Maryland for Thanksgiving! Samuel and I are very excited to see all the family that will be there. I'll be sure to take lots of pictures of Samuel bundled up for the cold. That will be fun!

I just realized that he's wearing the same thing in all these pictures. It's not because he doesn't have clothes to wear, but they were all taken Saturday morning, just before breakfast. We really do change his clothes.

Signing out...

Year in review-Thanksgiving

2008-11-18T17:33:00.006-07:00

It's hard to believe it's been a year. For over a year now, Samuel has had enzymes with every meal. That's a lot of pills! He's had vitamins everyday. He's had breathing treatments most of those days. He's such a trooper, but to him, he doesn't know that other kids don't do that. He's been really getting into his breathing treatments. He knows he can't win the fight anymore so he enjoys the silly songs we sing for him. When he sees the mask, he actually puts it up to his face for a few seconds. How fabulous!

In the past year, Samuel has had it pretty easy, considering what we are up against. He's only struggled with pneumonia once and the constant battle hasn't been anything more than keeping his weight up. He hasn't had one hospital visit or long stay at the emergency room or clinic. All in all, we've been very blessed. He is a very happy boy who loves just that: being a boy. He likes to get dirty, be in control and not sleep. He really enjoys getting into news things (i.e. trouble) and climbing the stairs to go back down them. When I look at him sleeping in his bed, it's amazing how big he is getting! I am so blessed and have so much to be thankful for.

So, what's Samuel been up to? Well, some people would like you to think he was the one who coordinated the jail break yesterday, but he told me he was trying to stop it. Miss Amy had the windows open and turned the corner to see one and a half kids out the window with Samuel holding on to the legs of the one who was on his way out. Like I said, he told me he was trying to pull him back in, but you can believe who you would like.

The high chair must be a comfortable place. When he can't even stay awake for some chicken nuggets then he must be extremely worn out.

The other day I had some great video of Samuel scooting around with his tractor. Then I went to a baby shower and was deleting old pictures and deleted the video without uploading it first! So, I have to record him doing that again soon and get it up. He looks like a little old man walking along. It's great!

We had Samuel's first year portraits taken. They turned out great! Here are just a few:

He likes high hair, just like his mommy! :)

The first pose in this collection (above)...can you see the mischief in his eyes?

We love Samuel!

A Year Ago, Today...

2008-11-13T10:28:00.002-07:00

On this day, one year ago, Samuel had his sweat test. I was a nervous new mom and Samuel was a sweet little, itty-bitty, baby.

He's a little boy

2008-11-11T20:40:00.008-07:00

Wow! It seems like since Samuel's birthday his personality is developing so fast! In addition to walking, with the help of his John Deere tractor, he is really starting to test the waters.

While I've been working with him to learn the sign for "finished", he will only sign that he is finished when I ask him. And I can usually tell when he is finished because he starts throwing his food in the floor. Cute at home because Lucy is eager to be on the clean-up crew, but obnoxious at a restaurant or friend's house. That being said, Sunday morning he was eating pancakes for breakfast. While he was eating, I was making a pot of coffee for myself. (Yes, a pot). I looked over to see him throw a piece of pancake overboard and then watch Lucy gobble it up. Just as he was reaching for another piece, I said to him, "Samuel, don't throw your food on the floor." He looked at me, and while making eye contact, dropped another piece over the other side. He is such a stinker!

This is his latest discovery:

He is also doing just great at Miss Amy's house. Kevin has been dropping him off more frequently that I have but I had a turn last Friday. He was so eager to play, he couldn't have cared less when it was time for me to leave. On my way to work, I called Kevin and said "He's supposed to cry when I leave! It's supposed to be harder than this!" We both knew he would adjust well, just not THIS well! :)

He has so much fun at Miss Amy's, playing and doing a daily project. I have Samuel's project on the wall in my kitchen. Soon, we won't need to paint or buy any expensive art to hang on the walls since they will be covered with Samuel's handprint turkeys, trees, pumpkins, or whatever else he is working on that day. He is so busy there, he only has time for 1 nap. Sometimes, it comes a little early. Poor guy... Kevin and I don't know whose kid this is as neither of us ever remember falling asleep while being served a meal. ;)

Kevin and I are bracing ourselves for a big growth spurt. Samuel has had a cold for the past few days and didn't sleep well Sunday night. THEN, he only had a short nap on Monday. Knowing this, we let him take a little nap that evening, starting around 6:30 or so. By 8:30 we were wondering if we should wake him up. We took our chances (after I said I would be the one to get up with him if he woke up fully rested at 2:00 am) and let him sleep on. He woke up at 3:00 am, looking for a binky. Once that was recovered, he went right back to sleep. At 7:45 Tuesday morning he finally was ready to get out of bed. Both Kevin and I were shocked that he slept that long but know when that happens, he's getting ready to grow.

Not sure if I mentioned it before, but Samuel is on a new milk now, Nutren Jr. An 8 oz. can is 250 calories. And he's supposed to have 3 cans a day. Is it any wonder he's starting to get that second chin back? It's great! Maybe we can get his weight up in the same percentile as his head (the 90th)!

Thanks for checking in. More updates soon, I promise.

Samuel is 1!

2008-10-31T14:00:00.009-07:00

My little boy is growing up. Yesterday was his birthday and all day I kept remembering what I was doing at that moment a year ago. Samuel's grandparents (Erica's mom and dad) were able to come visit for his birthday so he got extra spoiled and didn't have to go to Miss Amy's house for a few days. For his birthday we had some friends and family over for some cake and ice cream. We watched him play in/eat his cake and attempt to play with the gifts he received. He was so sleepy by that time, there were about 2 that he was fascinated with. All in all, it was a great time. Thanks to all who could make it or otherwise shared in the celebration.

On his big day, Samuel figured out a new way to get to things he's not supposed to have. We have a lamp and some glass coasters on a table in the living room. He's not allowed to play with these things. Yesterday, Samuel figured out how to get to them in a new and exciting way: go the back way. This is him leaving the scene of the crime.

Today I saw the funniest thing. I saw a Hawaiian surfer on a John Deere tractor being attacked by a bear! Who would have ever thought?

I have finally uploaded some pictures from recent trips or local adventures. Tennessee was great and the photo ops were plenty. Some of my favorites: our golf trip.

There is a local farm, Schnepf Farms, where we took our youth group a few weeks ago. If you are looking for some great entertainment for your family or group, I highly recommend it. There are so many things to do there for all ages: rides, corn maze, train rides, hay rides, food, pig races, petting zoo...so much to do. We got started a little late but still enjoyed ourselves. Just get your tickets at Fry's Food first and save $2....always important.

Samuel has been doing great at Miss Amy's. No more tears all morning like the first few days. He's got some great friends over there in Delaney and Timmy. The other day Timmy even got up from Dora to welcome Samuel there for the day. I can already tell a difference in how he interacts with other kids, even though those 2 are older than he is. He's doing very good and I'm very proud of him.

It's Monday

2008-10-20T21:29:00.002-07:00

My first day back to work. It was a good day for me. I started working again. I am officially a "working mother". Not to say I wasn't before...aren't ALL mothers working? At any rate, back to the office I go. Not such a great day for Samuel. He stayed with his friend Delaney and her mommy, Miss Amy. Poor Miss Amy. Samuel cried for most of the day, wouldn't eat, refused to sleep, and from what I understand, made the other kids cry too. Is it possible Samuel will be asked to not return? Never. Delaney loves "her Samuel" too much. :)

Just an update on Samuel's health:

Last week he had a fever (see previous post). He had a chest x-ray. On Saturday evening I got a phone call that I wasn't prepared for. The technician and doctor had found something in the upper right lobe of Samuel's lung and they couldn't explain what it was. Something was there, whether a mass of tissue, fluid, or pneumonia. After worrying a little and praying a lot, we met with his pediatrician today. Doctor says his chest sounds great! And he suspects, even though he hasn't seen the x-ray, that the mass/haziness in his lung is just pneumonia. He was treated for pneumonia last week so we are already half-way through that treatment and Samuel seems to be doing OK. He still has a cough, which I am expecting him to have that for a while. Thank you Jesus! Silly as it may sound, I'll take a diagnosis of pneumonia over a "mass of tissue" any day!

I realize I've not posted new pics lately. It's not that I don't have them...We got wonderful pictures in Tennessee! Just, the camera is downstairs and the computer is upstairs and, I think you can see where I'm going with this. Maybe tomorrow.

Thanks for checking in and praying for Samuel!

Week in review

2008-10-16T23:27:00.004-07:00

As I write this, I can hear Kevin saying "You need to go to bed!" but he isn't here tonight so I stay up and blog. :) I'll pay for this later...

I'll pay, mainly because sleep has been elusive this week. Monday and Tuesday mornings, Samuel woke up early and the only consoling he would accept was to lay in the family bed, between us. OK, fine. We just got back from a trip, I thought. He should be over this soon. Right.

Tuesday afternoon I was playing with him in the floor and when I picked him up, I immediately noticed his back felt very warm. I took his temperature and he had a low fever. I figured it was because he is getting a new tooth (#2). Being like most other moms, I gave him some Tylenol and took him to the grocery store. Later that evening, after the pediatricians office closed (it always happen like that!) his fever was higher, like in the 102's. He was really not himself and just miserable. Kevin and I struggled with the decision: do we wait until the morning and call his doctor or do we take him to urgent care? I waited until Kevin was in bed to decide that we needed to go to the clinic. Really, I didn't but it just worked out that way. Sorry, Kevin.

We got there around midnight and after 2 pukey shirts, 1 chest x-ray, 1 throat culture, 1 mid-night call to the PCH pulmonologist and a prescription for antibiotics, we got to go home. It was about 3 am. Wednesday was miserable as I struggled to give him enough fluids, clean up those fluids when they came back, then try to feed him and keep him comfortable. It's heartbreaking when he looks at me, crying and says, "ma-ma-ma-ma".

BUT, his fever broke last night, thanks to many prayers of our friends and family! And today, he's back to his old self: digging through the cabinets and climbing the stairs. In fact, today he made it all the way to the top and half-way to the office when I caught up with him. When he sees me coming, he crawls as fast as he can like he's running away. As funny as it is to watch, we are really trying to discourage that behavior for when he starts walking. I can hear you all saying "good luck" with a sly grin on your face. Thanks. Thanks a lot.

Special Release: The time has come

2008-10-13T08:57:00.000-07:00

Make an on-line slideshow at www.OneTrueMedia.com

Support Team Samuel here

What's new with Samuel

2008-10-06T21:44:00.015-07:00

Someday soon, too soon for me, Samuel will figured out he doesn't need to hold on to the couch to get around. He's already mastered crawling and is quite comfortable climbing the stairs. Scary. (I'm sorry this is sideways - I can't figure out how to fix it. It's not long so you shouldn't get too bad of a neck cramp.)

We'll call this one "Not too big for his britches". I had put him in a new pair of jeans the other day and I went to see what he was doing...his britches were falling down! He ended up getting down and crawling right out of them! I have a nudest. He crawls away mid-diaper change as well. He's such a stinker!

Lately, Samuel has been making this funny noise with his mouth, smacking his lips sorta. The other day after lunch I thought I'd take a minute to record him doing it. He did for a little while but he got distracted and had other tasks to do. It begins at about 1 minute and I'll let you guess what it is. :)

Usually Samuel enjoys bothering Lucy and she usually leaves him alone. Sometimes they play together and it's so cute. And USUALLY, Lucy doesn't like Samuel to get in her food and bones. However, she is learning that he is very generous when handing out bones (1 for you, 1 for me) and sometimes they share food (YUCK!). But Samuel has recently started reaching for things higher in the pantry. The other day I had the door closed but not all the way. It didn't take too long...

And then...

One last thing. I finished "The Book"! It's not the best work I've ever done, but it's finished and Samuel likes it. He drags it around on the dirty floor! But I'm so glad it's finished. I'm so proud. I'll have to take a picture of it and post it.

Thanks for checking in. I'll update later in the week as we have Samuel's "CF Annual Visit" tomorrow.

It's Potty Time!

2008-09-29T10:55:00.002-07:00

A few weeks ago I was telling about collecting a sample from Samuel and mentioned it would be easier to start potty training. The more I thought about it, the more I liked the idea so last week we started. Well, I started. I was working with him every day. Friday was the day. On Friday, Samuel peed in the potty. He did on Saturday too! The first time it happened, I was so surprised! He was so slick about it and I hadn't even noticed until it was time to get him up and I almost spilled it in the floor. But by Saturday, he knew what he was doing. Then Saturday evening we tried again, just before bathtime. Not so much luck then. He peed in the bathtub. Close...it's in the same room, right? I'm so happy that we are getting a head start on this.

Not only is it Potty time, but it's Party time too! I've been working on Samuel's first birthday bash. It's not really a bash, just some friends coming over for cake and ice cream but it will be a bash to him.

That's about all that's going on around here right now. Will keep updating as things change.

A new find - This is BIG!

2008-09-19T17:44:00.006-07:00

This is so cool and I am so excited to be able to share with you.

I'm working on something big. BIG big. Well, it's big to me. I've found this site, onetruemedia.com and I think it's fabulous. If you know about it already, just keep those comments to yourself. I want to think I was the one that discovered this on my own.

Samuel's first birthday is just around the corner and it seems like that should be about the time I should start fund-raising for Team Samuel's participation in Great Strides 2009. For a while I've been thinking about a video for Samuel and this site allows me to do it...for free. Yes, free. I love free stuff! And this allows me to put my photos, home videos and choice of music together just as I want it done.

While I'm not finished this latest project, you can be assured it will be posted here to be the next big viral video. First I need to finish "the book" (see post titled 9 months), a sweater while I'm still excited about it and this silly diaper kit I purchased a while ago. Oh who am I kidding, I'll stay up all night editing, tweaking, and rethinking my choice of music and it should be complete by 2 am. But first, for real first, I need to go make dinner. Hungry husbands aren't very sympathetic to those of us who are too creative to make dinner! :)

Stay tuned!

Erica

P.S. No, they didn't pay me to say any of this stuff about their fabulous site, but they should!

And all the medical stuff

2008-09-16T00:57:00.004-07:00

While we were out of town we got a letter from PCH wanting to schedule a "CF Annual Visit". This is a time to meet with all members of the CF team to discuss Samuel's past year and set goals for the coming year. We should plan on being at the CF center for 2-3 hours. That appointment is set for October 7.

However, prior to the appointment, Samuel needs several tests. He needs lots of bloodwork, a urinalysis, TB skin test and a chest x-ray. I figured these things weren't going to take care of themselves so last week I started making appointments. This morning he had all his bloodwork and TB skin test taken care of. I felt bad doing this in one day, in one morning, but it's all done and we don't have to get more pokes. Samuel did GREAT with the pokes. I honestly believe he hates being held down more than he hates the sticks. As for the urine and x-rays. Well, the x-rays can be done later this week. We don't need an appointment for them. And the urine...

This afternoon we tried for the urine test but boys don't aim very well and he's even worse at peeing on que. To help this process, the lab gave me 2 collection bags. The idea is to give him a drink, lay him down for a nap with the bag strategically placed to collect what he releases during his nap. When he wakes, you empty the bag into the cup and all is done. I had the right idea, I guess. Drink? check. Lots to drink? check. Nap? check. Bag placement correct? I didn't have a diagram to follow but I'm confident that's a check. Bag 'O Pee after a nap? Not so much. See, the diaper and the bag were competely dry after the nap so I left it in place thinking "He has to go sometime!" About 1/2 hour to 45 minutes later I could smell that he had indeed peed and thought this process could be over. I laid him down to carefully remove the bag and the sample and change the diaper that had caught what was left when the bag was filled to the brim (yeah right). I was a little disappointed to find the diaper was soaked and the little plastic bag had worked it's way from the designated location. Not only that, but it was wet on the wrong side. Dry on the inside, wet on the outside. Fabulous. Thankfully, the nice lady gave me 2 bags. Now that I think about it, she probably gave me one "practice" bag and one "real" bag. If I mess up the real bag though, I'm going to have to go back to saying, "Here Samuel, just aim for the cup." I might as well start potty training.

We are still here

2008-09-16T00:13:00.009-07:00

I know I have been very lax in my posts recently. I'll blame it on catching up after "vacation". But we are still here and there is so much to add. It might get done in several posts. I'll put all his medical news in another post.

So Samuel is now getting into everything and gets mad when I put the gate up to keep him out of our front room. Tonight he climbed an entire staircase (supervised) at Bishop Hudson's house. At our house, he's done the first 3 steps to the landing, then stopped. And, what's great is he knows how to back down them to get down. He hasn't tried (yet) to go down head-first. But he is training for the speed-crawling event for the 2010 Olympics. I'm sure he'll qualify. Last week, when he started the stair climbing, I left him for a second to get his juice and when I came back he had crawled from about 3 feet away and was sitting on the bottom step of the stairs facing the second step. I was gone for about 5 seconds I'm sure.
He's also starting to copy what he hears. Such as, I cleared my throat the other day...he did too. He was making noises, I made the same noise, he did it again. He's even trying to say uh-oh when I do. The lesson: I need to stop calling people idiots when I'm driving.

The last post I said he's got a tooth. Well, he's getting another one right next to it. He's been smacking his lips for over a week trying to suck it through. It's cute when he makes a fish face for sucking so hard!

I also told about his silly face. Well, I have multiple pictures of the silly face, or toothy grin, as I like to call it. He's such a silly!

We keep Lucy's dog food and bones on the floor in the pantry. Under normal circumstances Lucy would NOT take kindly to Samuel messing with her stuff. But there is always an exception to the rule and today was it:

While we were in Virginia, we had the opportunity to take Samuel to the beach for the first time. It was dusk but it looks like we were there in the middle of the night. Maybe Kevin couldn't see the waves coming in and that's how he got his pants soaked. Yeah, I'm sure that's what happened. :) Samuel liked the water once he was used to it. This pic is the first wave touching his feet and the second after this was captured, he started to cry. But only for a second and he was ready for more. He really wanted to sit in the sand...
Also while on "vacation" we started to have some issues with going to sleep. Thank heaven for swings! I don't know what I would have done to get him to sleep that night. I remember I put him in the swing then went in the other room with my mom. Kevin and my dad were in the same room with Samuel. I heard him stop crying and the silence turned into 5 minutes. I said to my mom, "Samuel is asleep." I turned the corner and he surely was soundly asleep.

Speaking of sleeping in funny positions... Today I went in to check on him and he had fallen asleep in some yoga-type pose. His legs were crossed and he was bent at the waist on top of them. On the way down he caught the crib bumper pad and squished it for a little pillow. I felt so bad for him being all twisted up but then remembered how much I enjoyed being in that position when I was pregnant with him. He gets it honest I'd say.

Some other fun stuff:

So much to say and nobody understands:

And this is a baby chair similar to a Bumbo. It's great because babies can't get out of it so you don't have to worry about them crawling all over the place...they just stay put!

Checking in from the east coast...

2008-09-02T18:18:00.006-07:00

Samuel has one tooth and another making it's way in. I noticed the first one at the airport a week ago while we were waiting for our flight. Since it was delayed 3 hours and we didn't have anything else to do in the Phoenix airport, I was trying to keep him entertained and as tired as possible so he would sleep on the flight. A few days before, I thought I had heard a tooth scrape across a spoon but I could never see anything. He was also just not himself. He wasn't grouchy, just there. But at the airport, I could feel it and was so excited! I wanted to go over to the microphone at the gate and announce to my fellow passengers "My son has his first tooth! Finally!" but I just turned to another mom making conversation and shared the news with her. Thankfully, she didn't think I was crazy. Since we have been here he has started showing signs of having another break through. By the time we get back home to Arizona he should have 2 teeth.

He is also an avid crawler. He is really getting around quite well. You know your son crawls too much when the tops of his shoes and/or socks are dirty from dragging on the floor!

While we are away, I've been fortunate to have access to my e-mail while away. I get weekly e-mails regarding the growth and development of Samuel based on his age. Well, this week I got e-mails from 2 different sources regarding communication. Both sources encouraged parents to curb the baby talk. Do you hear the angels singing Hallalujah!? I believe teaching baby talk is confusing for a little one learning so much. I think of it like this: Imagine you were told the color red was actually blue and blue was orange and orange was really yellow and yellow was brown and brown was green and green was blue. You would have to relearn your colors. Well, if we always referred to a "bottle" as a "baba" then he would have to relearn this thing that gives him milk is really a bottle, not a baba. When giving him his bottles, I try to call it milk, not bottle, since milk comes from a bottle and juice from a cup. All this to say, I don't want Samuel thinking "So what else am I going to have to relearn?" I read about the importance of teaching children the difference between a cut, bruise, or scratch and not referring to all as "boo-boos". What a great idea! These sources also emphasize the importance of setting good examples of speaking properly. This doesn't mean I walk around the house saying, "Good day, kind sir" to Kevin, but, rather, just try to make sure what I say is something I want Samuel to say. At 10 months old, he is learning something new every second of the day. I really am trying to make it easier on myself to not have to re-teach him these important things later. While I'm on the subject, let me throw this out there: I'm not the best English speaker, but I'm determined to do my best.

Sorry no pictures this time. I can't get them loaded on this computer. I'll have plenty of pictures when we all get home. Thanks for checking in!

Be inspired!

2008-08-22T16:44:00.011-07:00

Samuel has been a real character lately. He has a really cheesy grin that he likes to give and it is so funny and cute. I haven't been able to snap a photo of it yet because he won't hold that pose but I'm sure I'll get it sometime soon.

Lately we've been having to put at least 2 binkies in his crib with him. Somehow he throws one overboard and needs the other for backup. But sometimes he will have both. And when he does the show begins. He will lay in his bed, binky #1 in mouth, and hold the other one in front of him. He sees binky #2 in hand, spit binky #1 out and insert binky #2. Then he'll pick up binky #1, spit out #2, and insert #1. The process repeats until he gets bored and falls asleep or we laugh too hard and he gets distracted.

The other evening he was having a snack in the floor and finally decided to share with Lucy. He is such a good sharer but Lucy needs help with her sharing. When he realized he wasn't getting his snack back he wasn't happy at all. He has since shared his stuff with her from the comfort of his high chair (I think he likes to see her jump up and get it from his hand) but hasn't been too upset by it.

While Kevin was gone to Show Low one evening, he missed some of Samuel entertaining himself. Luckily, I was able to capture THAT on video and share with him and all of you. The hard part is deciding which video to post as he did this for quite a while.

Has anyone else been inspired by the Olympics? I have. Seeing people set a goal and work every day to achieve that goal is inspiring to me. What have I been inspired to do? Besides stay up late watching, well, gee, I can't quite say. I've done some extra crunches lately and made an extra effort to trim some money on groceries. Now that I think about it, I think that last one is more of a necessity than anything else. I guess the thought that people who raise their kids and go to school and work just like you and me can achieve some level of superhumaness (that is a word created in our junior high class and I think it is appropriate here). They can live right down the street from us and for 2 weeks every 4 years their name is on our lips like they are super stars. And they are, I don't want to take anything from them. But thinking about it, greatness isn't difficult to achieve. Whatever you wish to achieve, just set your mind and never never never give up and you will be a superhuman champion in your own right. Good luck and God speed!

Samuel's IPL

2008-08-15T19:26:00.003-07:00

Happy Friday! Today was Samuel's IPL (Infant Pulmonary Lab) and it finally happened! It wasn't as bad as I had expected. I had told my mom "the beatings will commence at 1:00". But there were no beatings. I woke Samuel up at 7 this morning and gave him a bottle before he couldn't have any more milk. We played until about 10:20, when we went to the grocery store. I figured getting him out of the house and doing something would be less painful. He fell asleep on the way to and from the grocery store, which, luckily, is only about 2 miles away. He TRIED to go to sleep on the way to PCH, which is about 20 miles away, but Kevin and I did everything we could think of to keep him awake: rolled the windows up and down, honked the horn, sang action songs, and even did the cold wet washcloth to the face, neck, arms and legs.

If you have ever said to your child something like "One day you will WANT to go to sleep and I won't let you!" well, today was that day for me. Samuel has been fighting sleep for the past few days and today the roles were reversed. While it was funny some of the time, it wasn't a party. In the end, I felt cruel. I felt like a terrible mommy.

While at the store, he was really starting to get sleepy. I've never seen him act the way he did there. He actually laid his head down on the shopping cart and closed his eyes! Every fellow shopper commented on how sleepy he looked. However, the store employee must have thought I was crazy when I was crying in the baby food aisle. She said to me, "Boy, somebody looks sleepy!" and I replied, through my tears, "I know and I'm having a real problem with it." Surely she was thinking "sheesh, lady! just let him go to sleep!" but thankfully kept her crazy mom comments to herself.

After the morning, Samuel finally got to get some rest at 1:30. To make sure he was sleeping soundly, the doctor gave him some medicine to make him relaxed and sleepy. He was out cold at 1:35 and the test started at 1:40. It lasted for about an hour and we got results soon after it was complete.

For the results to make sense, you should know there are 4 parts to the test. The first 2 are done under "normal" circumstances i.e. no meds. The last 2 parts are after some albuterol is administered. The bad news is that his lung capacity is a little below normal. The good news is that after meds, it's excellent. While compiling the results the doctor asked if there was a history of asthma in our family. It turns out, Samuel's test results, according to this physician, are more consistant with someone who has asthma, not cystic fibrosis. I thought that was interesting and a blessing of sorts.

We left PCH with a very sleepy boy, who hasn't fought sleep once yet today, and a prescription for some med I can't remember. It's a steriod. We made sure to ask if it would get Samuel kicked out of the Olympics for doping. The nurse said it wouldn't. You can never be too careful about those things!

Thanks for checking in. Have a wonderful weekend!

Vote for US!

2008-08-14T18:27:00.006-07:00

No, I'm not running for office. But my mom and I made* some great grab bags for a contest. The more votes we get, the better our chances for some fantastic prizes! So vote early, vote often.

Pictures are below. Vote here.

Thanks!

*I may have helped my mom a little. Not that she isn't capable of doing something so wonderfully fantastic, I was just trying to be a good daughter since she has other things going on in her life. I love you mom!

Too many doctors!

2008-08-14T17:47:00.008-07:00

It's Thursday at the time of this posting and Samuel is scheduled for his 2nd attempt for a pulmonary function test tomorrow. If you are a faithful follower, you may remember we attempted this back in the spring with no luck. Samuel wouldn't fall into a deep enough sleep for us to begin the test. We have a few tricks up our sleeve for tomorrow, such as awake at 5:30 and no naps. BUT for a fun-loving boy who doesn't like naps anyway, this could perhaps be the best day of his life. This test is to provide us with a starting point. It will give us some baseline results for comparison in a few months and years.

We know Samuel likes paper at the doctors office. Well, he likes just about any paper. This is just a cute video taken at the pediatrician's office...before the 2 pokes.

I got an e-mail yesterday. The subject was "culture results". It might as well have said "We need to talk". You know the feeling. You know you are supposed to read it and eventually face the music but are a little scared of what it might say. Well, after reading a few other e-mails, I worked up the nerve to open and read this:

Hi Erica and Kevin,

Just wanted to let you know that Samuel’s culture just grew a “scant” amount of Staph aureus. It is the normal staph that is on our skin, etc. Not the resistant kind. He has grown this in the past. No change in treatment.

That wasn't so bad. I was relieved to say the least. One more culture that we don't have to worry about! Thank you Jesus!

Now on to the fun stuff. Look what Samuel can do now! Just who is teaching him all these moves? Once he is standing up, and while Lucy is barking you can hear Samuel purr. He rolls his tongue all the time. Even when screaming, he rolls his tongue. I'm glad I got it on camera.

I've also been asked to give more more more pictures. So here we go:

Samuel, nosy Samuel, as his fate walks through the door: the girls who gives the "pokes".

Posing, I promise. Big muscles!

Update on Samuel

2008-08-07T18:58:00.007-07:00

We took Samuel to PCH today for a follow up visit. He is 28.25 inches long and weighs in at 19 pounds, 9 ounces, just at the 50th percentile. This is a slight problem as the CF team would like to keep his weight up around the 75th percentile. To help pack the pounds back on, we are going to increase his calorie intake by making his milk more concentrate. It's usually 20 calories per ounce; we will make it 24 calories per ounce. Part of the issue is Samuel is sometimes too busy playing to eat so I am going to try to feed him more frequently throughout the day.

Samuel has also been having a problem sitting still long enough for a breathing treatment. It wasn't a problem when he slept most of the time because we could hold a mask to his face for 10 minutes with no problem. Those days are no longer. We are going to use a MDI, or inhaler, along with a spacer to give him the inhaled medicines. This will take much less time than before. He just needs to have the mask to his face for about 1 minute total and should be much more "doable" than before.

Like the last visit, he enjoyed playing with the paper on the table, but was really interested in the cords on the wall. He was too little to understand he was sitting on the back of a hippo but we all agreed one day he will think that is so cool.

The hypertonic saline study has been put on the back burner again for reasons I am not sure of. We were going to wait until Samuel began participating in the study to try to complete his pulmonary function test (PFT a.k.a. IPL) again. However, since we don't know when that will be, we need to do the PFT soon. We will attempt to do this again in about a month, I would guess. We have to go visit everyone in Maryland and Virginia first!

Samuel will go back to PCH in 2 months, which I am sure will feel like 2 weeks. Just think, in 2 months, we will be preparing for his 1 year birthday! But before birthdays and PCH, we go visit his pediatrition on Monday for a well-baby check. Well-baby = shots. Throat cultures at one place, shots at the other...poor little guy. :(

Thanks for checking in. Stay tuned for more updates later.

It's been 2 months

2008-08-06T22:36:00.003-07:00

Already! It seems like we were just at PCH yesterday. But we are going again tomorrow, Thursday. Samuel is doing OK and this is just a follow up visit as we have to check in every 2 months. I'm not anticipating any problems except for his throat culture. I'm sure he's going to have some bugs in there. We'll see what he grows this time.

I will post again tomorrow with a summary of the visit. And hopefully something newsworthy will happen between now and then.

Have a wonderful day!

9 months

2008-07-30T14:00:00.005-07:00

Samuel is 9 months old today! So what are we doing to celebrate? Well, we went to Stroller Strides for the first time this morning. It was fun and Samuel enjoyed it. I have a week of free classes to decide what I'd like to do and I'm going to take advantage of it! The class starts at 8:45 which is just about the time Samuel is starting his morning nap. He wasn't too upset by that this morning. He just slept longer when we got home.

Samuel has been up to lots, lately. I'm not sure if I have mentioned it before, but he says da-da, ma-ma, he frequently sucks his thumb when there isn't a binky around. He can pull himself up with minimal help, he can feed himself small pieces of food like fruit, cereal pieces, Baby Mum-mums (yummy!). When in his bed, he enjoys playing peek-a-boo with the bumper pad. His latest act:

Yesterday we went to SanTan Village with the hope that Samuel could play in the water area they have for kids. It was a good idea but too many other people had the same one. It wasn't a problem that there were lots of kids there but the breakdown started when the kids that were there could walk, talk, scream, shove, push and generally be bratty, selfish kids...not very good share-ers. I am taking him back tomorrow when I have a little bit more people power. We are planning a play date for our kids.

It may surprise you to know I enjoy a good story about poo just about any time. Now, I have pictures to share, so be warned. Just poo, no booties. :) Samuel loves the jumparoo. It's nice to put him in there while I'm in the shower because I can see him enjoying it while I'm in the shower. This is usually how it works in our house, if I don't shower while he's sleeping. So when I got out of the shower the other day, I had to get the camera, for this is what I saw:

Yes, it ran down the back of his leg and dropped on the floor where he stepped in it while jumping, pushing it down into the carpet. When I wanted to share with Kevin he said only me and Kate (Kate Gosselin, of Jon & Kate plus 8, who takes pictures of her children with their first poo-poo in the potty) enjoyed poo so much.

In the crafting world, I have finished the bag and need to get the pictures taken and loaded so voting can begin. And now I am working on "the book". It is an activity book for kids with several pages for them to learn things like zipping a zipper, tying a shoelace, jingling bells, fastening buttons, you get the idea. I figured a book like this at the store would probably cost about $15 or so. At last check I have spent way more than $15 on supplies for this book. I had better get busy working on it or I'll be in big trouble!

I had better get back to life. I need to shower while Samuel is sleeping for fear I'll have another incident as described above.

I was just thinking

2008-07-24T09:58:00.004-07:00

The other evening I was on my way to church. I was driving and Samuel was with me. We were late, as we most always are. For some reason, when exiting the freeway here, a driver isn't supposed to turn right on red at the end of the ramp. (I must admit, I didn't notice the sign until we had lived here for a few months...oops!) But as I was waiting at this silly light for cars to come by that weren't even there, I was forced to just stop for a minute and notice the world around me. This particular evening there was the most beautiful sunset and it was just begging my attention as we waited at this red light. It was like I was smacked in the face with the idea that God created such a beautiful place for us to live. I quickly tried to remember the last time I had noticed such a sunset and am disappointed to admit, I couldn't. Can you remember the last time you enjoyed one of God's beautiful creations with your loved ones? I hope you relive that experience soon and not have to be jolted into the realization like I was. Paper and work will always be there but the moment to share God's blessings pass all too quickly.

Crafty Saturdays

2008-07-21T09:33:00.005-07:00

Happy Monday morning!

As I'm sitting here, Samuel is in the floor playing with some Nerf darts and wanting Lucy to join him. A minute ago she was sitting in front of him and with the dart, he reached out and whacked her on the head. The next few minutes Samuel waved the dart around and Lucy tried to catch it. It was very cute.

We have also been working with Samuel on sign language. We've been introducing him to ASL with signs for milk, eat/food, more, mommy, and, daddy. This has been going on for a few months with no indication he gets it. Until this morning. We walked into the master bedroom to check on Kevin and Samuel smiled and signed daddy. Go Samuel! Needless to say, we were very excited!

Samuel has been busy this weekend. He is just about to crawl and will scoot around the floor using whatever means he can, rolling over, scooting on his bottom, or laying on his belly and rocking back and forth, hoping the momentum will carry him. As we were relaxing around the house this weekend, Samuel would use me or Kevin as his personal jungle-gym and pull himself up using our legs. We are bracing ourselves for when he becomes comfortable with getting around. Lucy better find a good spot now!

On Saturday I was using my "me" time to search out some quilting information and came across this:

Now, I have to tell you about it because it may help ME win it. But if YOU enter and win, then I except you to remember where you got your info!

When I wasn't drooling over my new quilt, I was working on another contest. I am making a grab bag with felted flowers on the front. It has been fun getting to merge 2 crafting/sewing techniques together in 1 project. When the bag is finished, I will take pictures and post them here.

And because it wouldn't be fair for me to keep all the cute pictures to myself:

Have a blessed day!

Pictures

2008-07-18T10:04:00.009-07:00

Thought I'd add some pictures of our recent trip to Maryland. Enjoy!

This is just the cutest kid around!

Samuel with his Grammy and Papa Kelley.

Four generations: my grandparents (grandma and grandpa Phillips), my mom, me and Samuel. This and the next 2 pictures were taken just after breakfast the morning after we arrived. It was about 4 am to me and I was NOT prepared for picture taking. BUT, it was a beautiful morning on the deck at my parents house. We had to get our picture taking opportunities in before my grandpa, uncle Ron and aunt Lisa had to get on the road. They were taking grandpa and Stray (the dog) back to Indiana after several weeks visiting in Maryland.

My grandma and grandpa Phillips and Samuel.

My uncle Ron and aunt Lisa with Samuel.

This was a rocking bear my mom has at her house. At first, Samuel didn't know what to do in it but after about 10 minutes he was rocking himself.

Samuel and his grandad at dinner one night. Notice how everything is WAY out of reach! Samuel has elastic arms. :)

As I was packing up our stuff to come back home, Samuel was playing in the pack-n-play. He started laughing and I looked up to see he had pulled himself up onto 1 knee and 1 foot. He was so proud of himself.

Hope you enjoy!

Home Again, Home Again, Jiggety Jig

2008-07-13T14:30:00.007-07:00

We are home from our trip to Maryland! It was a nice visit but it's always nice to be home. I have some pictures but haven't loaded them onto the computer yet so they will have to be posted later.

Samuel was spoiled by all his grandparents and I'm still trying to get him straightened out. One night in particular, Samuel was in his pack-n-play and his grandad came in to say goodnight. Samuel whined until he got picked up and carted down the hall to say goodnight to gagaw (grandma). He had been a little fussy until then but that all changed when he made it out the door. The expression on his face as he left the room was priceless like "I won! HA!"

Samuel and I were in Maryland on Kevin's birthday but daddy got a very sweet gift, even over so many miles. Samuel started saying DA-DA on his birthday! I was so surprised to hear him babbling in the back of the car and almost ran off the road to hear him saying dada. As for other milestones: he is pulling himself up to stand up. Although he doesn't crawl, he does get around. He scoots on his bottom and can s t r e t c h himself out to get things placed out of his reach. And even though he still has no teeth, he is eating all kinds of food and is pinching things to bring to his mouth. Although, when presented with a new food, he rolls it around in his mouth, furrows his brow and turns up his nose, like, "You guys think this is good? I don't know about THAT, but I'll eat it anyway."

Several months ago we responded to an invitation by one of AZ's Finest to participate in a video to help her raise money for the CF Foundation. Of course, since we have the cutest kid around, we volunteered him to participate. You can see the video on YouTube by clicking here. It is very well done and we are proud to be a part of it! This is the first of Samuel's acting/modeling career. He recently had pictures taken to be included in a book, The Faces Of CF. I'm not sure when the book will be ready for distribution but it will be later this year.

July is Excellence at NLBC. We are constantly (at least I am constantly) striving to be a better person and better Christian. Saturday we had a ladies meeting and our speaker talked about being a virtuous woman. I'm still working on that one :) and praying God to help me be what He wants me to be. Lord, help me submit myself to your will and your way and be the woman, wife and mother you have called me to be... more like you. Help me excel in those ways.

Hypertonic Saline Study

2008-06-30T02:14:00.002-07:00

Forgot to mention it: The hypertonic saline study will be up and running by August, probably sooner. Samuel will be participating and will have his IPL (Infant Pulmonary Laboratory) or pulmonary function test at that time.

Click on the words to learn more about the hypertonic saline study or infant PFTs.

New house rules, bananas, and true confessions

2008-06-30T01:22:00.011-07:00

We have a new rule in our house: if you use the last diaper in the basket, it's your job to replace them. Think like toilet paper. I should have known better than to risk it BUT we haven't experienced the "fountain of youth" in a while...like, many moons ago! ha-ha-ha :) So when I was changing Samuel's diaper and a reached in the basket to find it empty, I SHOULD have covered him with something...anything... before running into his closet for another package of Kirkland diapers (insert shameless plug for Costco diapers. Why haven't I trusted the Kirkland brand sooner? They are the only way to go!). BUT, alas, I didn't cover him up and when I turned around he was shooting right into the laundry basket full of clean clothes! Clean AND folded clothes. What didn't make it in the laundry basket of clean clothes went down the side of the changing table and onto the carpet. I promise, he's working on his aim already. We need to keep working on that.

It was really quiet in the house a few nights ago. Upon investigating, this is what I found.

We have been getting ready for a group birthday party which was tonight. We hosted a birthday party for Kevin, and 2 other friends of ours. All of them have a birthday within a week of each other. It was so nice to get my house cleaned up (yes, I guess I needed a really good reason), my new blinds hung, and cook for a large group. The party was great and I highly recommend the American Idol game for Wii. SO entertaining! Eli and Pastor Tim, be glad I don't have my camera to upload the video. But remember I have it and I'm not afraid to use it. :)

The other day I was sitting in the floor with Samuel, eating a banana, and Samuel seemed very interested. Kevin was home and was able to get some video of Samuel sharing my banana. Looks like Lucy wants to share too!

And look who's trying to get around! Of course, he only face plants for the things he isn't supposed to have...like mom's phone and banana peels.

Today's confession: I'm addicted to Jon & Kate Plus 8. TLC has been playing this frequently. In fact, I believe there was a J & K + 8 marathon this weekend. What's so great about it? Here is where the confession comes in. It is a bit scary to admit that I think, if I were in her shoes (2 sets of multiples under age 7, or however old they are now) I would be very much like her. She is, how do we say this, she maintains control of her home. I have been having my own Jon & Kate Plus 8 marathon lately thanks to DVR. Samuel and I both enjoy this show. The times when I think my life is crazy and how do we get everything done I think, "Kate can take care of her family, make breakfast lunch and dinner for 10 people every day, sweep and MOP her kitchen floor 3 times a day (yes, DAY) do however many loads of laundry, get 9 people bathed, brushed, and dressed, etc." And what did I do today? Well, I've gotten us up and dressed and we are going to the grocery store and dinner may be a little late. Then I realize Kate doesn't have to watch 3 episodes of her own show to get her "fix". In fact, who knows when she got to sit in front of the TV and watch anything with her kids? There is some argument over the tone Kate takes with her husband, but I have my own opinion. I remember this is a reality TV show and these are real people, humans, in fact. And TLC, as honorable as they are, have a job to create a TV show people like me will want to watch. So they probably record this family for, we'll say, 12 hours a day, sometimes dividing themselves as the family separates. And then they edit what they have for a 1/2 hour show. I'm am pretty sure they take the worst of Kate and edit it to make it addicting for people like me to chuckle, shake our heads, and thank God we don't have 8 young kids.

So now that the blinds are hung, the party is over and the Jon & Kate Plus 8 marathon is over, we can start packing for our cross-country trip! Samuel is going to Grandma and Grandpa's! And he is going to see great-Grams and great-Gramps! We can't wait, although we can wait for the 4+ hour plane ride. Samuel doesn't like to sit still, especially on my lap, for that long. And he is so good he only likes to fall asleep in his crib, not my arms. yippy fun yay-rah. This plane ride is gonna be a blast.

By the way: Don't be afraid to leave me a comment. I'd love to know who is reading this.

Just breathe

2008-06-20T21:48:00.005-07:00

Samuel is starting to get used to his breathing treatments. We like to do them after he goes to sleep so he won't fight as much but this time he even held the mask to help! There actually is a smile under all that.

It's been so hot here lately but we still try to get out early in the morning for a walk around the neighborhood. That will be so much easier now that we have a new (to us) Jeep jogging stroller! It has a steering wheel complete with gear shift, music button and horn that Samuel was incessantly beeping during our walk this morning. I guess I wasn't going fast enough. Or Lucy wasn't getting out of the way fast enough. One or the other.

We are also getting the house ready for a birthday party for Kevin and some other friends of ours. What am I doing blogging when there are blinds to hang and walls to paint and rooms to clean? I better get busy! I have one week to get ready.

THEN right after that it's East Coast time! Samuel's grandparents need their grandson "fix" so he and his very personal assistant/handler (that would be me, his mother) will be heading out there for a visit. We can't wait!

Update on Samuel

2008-06-13T00:56:00.007-07:00

Samuel had a follow-up visit at Phoenix Children's Hospital today and is doing quite well. He is 27.5 inches long, right at the 50th percentile, and 18.5 pounds, around the 50th percentile as well. Dr. O'Hagan, his pulmonologist, said everything is great. His lungs were clear and growth is fine. Like every other visit, he had to have a throat swab. While he didn't cry, he's not sure about it and thinks he might not like it so much the next time.

We are increasing his enzymes to 3 per feeding and increasing salt to 1/8th teaspoon twice a day. And we get to go back in 2 months.

We still don't know much about the hypertonic saline study Samuel is supposed to participate in. It's not up and running yet. We were waiting to retry his infant pulmonary function test (PFT) to be part of the study since he would have to get one before the study begins. But if it doesn't start soon then we will just have to take the chance of having to do it twice. Poor little guy! We didn't have any success the last time because he kept waking up before the test could begin. Turns out he doesn't really like people putting stuff on his face while he tries to sleep.

The best part of the visit? The paper, of course!

After the visit, we came home and had to have an emergency bath. He enjoys playing in the water. And sitting in the kitchen sink.

Thanks for checking in.

We're having fun, fun, fun!

2008-06-09T21:28:00.009-07:00

There is finally rest for the weary! Samuel has slept the past 4 nights completely through the night. No getting up for middle of the night feedings. He goes to bed around 9:30 after a meal of milk and jar of baby food, some CPT, a breathing treatment and story. He wakes up between 6 and 6:30. Kevin and I love to hear him wake up because he will just lay in bed for about 10 minutes and jabber away. He is truly discovering his voice as well. Samuel is so much fun!

As of today, Monday the 9th, we have been at church every day, except one, for 10 days. VBS is this week and we have been helping transform the sanctuary into a space ship. Tonight was Samuel's first VBS service and he didn't know what to think. Kids were all over the place acting out songs. There is a laser light show on the ceiling and some spinning colored lights on the floor...he didn't know where to look first! But it was fun and he was very entertained even if he doesn't have a clue what it's all about.

On Saturday we were having a car wash and it was H-O-T hot. Poor Samuel was sweating so bad, his sweat had poured down his cheek by his ear. Even though I had tried to keep him cool and clean by wiping him with baby wipes, I knew he was going to be super-salty. (People with CF release more salt in their sweat than those without CF). By the time we got into some air conditioning, I could tell where the sweat had dried because there was so much salt on his skin. Time for some more wiping. About an hour later, one of his many girlfriends, Tia, gave him a kiss on his cheek. I told her to lick her lips and she thought I was crazy but finally did it. The look on her face was priceless. She turned up her nose and said "What IS that?" I explained about the salt thing and we all had a good laugh. And Samuel got more salt that day to try to make up for what he lost in his sweat. He also got a nice bath later that night. We had an impromtu photo shoot after that and came up with one of my most favorite pictures of him ever! Yes, that is his thumb.

We have also been having fun playing in Delaney's Jumparoo. Thanks Delaney for sharing your toys! This is a video from Friday afternoon. I'm just making funny noises with my mouth and Samuel is just hanging out. Samuel can get some air when he gets going on this thing!

June is Family

2008-06-02T01:36:00.005-07:00

Yes, June is "family" month at NLBC (New Life Bible Church). Another reminder that I'm a mother and responsible for someone other than myself. Goodness! And what a responsibility it is! We were reminded this morning of what an honor and responsibility it is to raise our children as God would have us. Who knew teaching this little boy would be so much work? Undeniably, a 24-hour, 7-day a week job. But it's SO worth it!

I'm not exactly sure where the month of May went but I realized the other day that Samuel is now 7 months old! He's growing so fast and will be driving before too long. OK, maybe not driving, but I feel like I should start planning his first birthday party now in case it sneaks up on me, which is happening frequently.

In an effort to extend our family, Kevin and I have agreed to help with the junior high class at NLBC. We are extremely excited as we both have always had a special calling toward this group of young people. Call us crazy but we enjoy spending our spare time with some crazy teenagers. I guess you could say we just "adopted" about 15 more kids. We can't wait to get the ball rolling and get class started. So much to do!

Summer is here!

2008-05-30T00:08:00.001-07:00

We are just about settled in to our new home! It has been a busy month moving and then a week later breaking in the house with Samuel's Gagaw and grand-dad Engle, Uncle Andy and Aunt Morgan and great-grandma and grandpa Engle coming to visit. We certainly had a houseful! It was very nice to spend time with everyone and share such a nice time on Mother's Day.

While everyone was visiting, Samuel got to go swimming for the first time. Even though the water was very cold, he seemed to enjoy getting his feet wet. Mommy didn't have the heart to get him totally wet and cold. Since then, I was able to find a big floaty crab for a boy his size and I think we will take advantage of that tomorrow. After that first "swim", my mom took me and Morgan to get pedicures. Of course, since the big boys were golfing Samuel had to come with the girls. He had the best time entertaining the ladies at the nail salon. I'm not sure who was having more fun there but I would almost guess it was the ladies. He would make his purring noises, rolling his Rs, and they would all do it back.

Samuel has also had his 6-month well-baby check up. His weight was 18 pounds (50% percentile), which has slowed down a bit since he was sick last month. He is 28 inches long (87% percentile) with a head circumference of 19 inches (97% percentile). A few months ago he was a short fat kid with a big head. Now he is the long skinny kid with a big head! He got some more shots, which he handles like a trooper. He cries for just a few seconds then is over it. This particular time was more fun than before because he was able to sit up better than ever and play with the tissue paper on the exam table. We kept having to move him up further on the table to the part that was covered with paper. By the time we left, there was no paper left for him to play with! He was having a blast.

He has also started developing his tastes. Samuel isn't too fond of vegetables, but will eat them. He prefers the sweeter foods like fruit. And as far as the prepared dinners go, he enjoys them for the most part. He does NOT like macaroni and cheese, surprisingly. I always thought every kid liked that! He still doesn't have any teeth although there are a few white specs where teeth should be coming in. I've given up looking for them and just know they will be there too soon.

It's been so fun getting to spend time with him. Everyday with him is a gift. He is really developing a personality and it is so much fun!

I'm a bad mother and other events

2008-05-01T00:00:00.000-07:00

Happy Cystic Fibrosis Awareness Month!

So much for my efforts to keep this updated! We HAVE had a lot going on. We just signed for a new house, some friends got married, packing to move, Great Strides...April flew by! And Samuel just turned 6 months old.

Before you call child protective services, Samuel is fine and I've been assured these things happen all the time. Samuel was on the couch in his car seat and Kevin and I had wondered upstairs. About 2 seconds after I realized Samuel was downstairs by himself, I heard him screaming. On my way down the stairs, which seemed to be in slow motion, I realized Samuel wasn't where I had left him. He was laying on his tummy on the floor. He had fallen out of his seat and onto the floor. By the time I got him calmed down, I was a mess. Needless to say, we buckle him in all the time now, no matter what.

We also had an impromptu visit to Phoenix Children's urgent care clinic on Tuesday night. It's a great facility and I wish it didn't take a 102.9 fever to get us there. Samuel's fever spiked rather quickly the other day and unfortunately his pediatrician's office was closed when it happened. At this point, the doctor thinks it's a viral infection. The good news is his lungs and ears were clear and seemed fine. The bad news is, well, I know for sure that a 6 month old boy doesn't like to have a catheter and isn't too fond of getting blood drawn either. On the other hand, I know what it takes to get Kevin off the golf course before the round is finished. Sorry Kevin!

Samuel still doesn't have any teeth. I keep expecting him to open his mouth and show me two, but he will probably let me know about any teeth he has by biting me.

Great Strides was great on Saturday. Team Samuel exceeded its goal. At the time of this post, we have raised $5,415 for the CF Foundation. This far exceeded our goal of $3,000. If I had to, I think I could do that walk every weekend. It didn't take too long and was lots of fun. I wasn't expecting it to be as emotional as it was.

Never did I ever think I would participate in a walk like that for my son. Later that afternoon I had a few minutes to reflect on the morning and began to, well, honestly worry about Samuel and all he will face. As his mom, I want to protect him and keep him from harm and pain but now, looking ahead, I am not prepared to do that and I'm fearful of all he will face that just isn't fair for a boy like him! From time to time it's been easy to check back into a little pity party for him. So, last night, it was all too timely to be reminded of the peace God has for us. While we were having a Bible study at church, our friend leading it started with the scripture from John 14:27 (New International Version) "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." He could have read that and dismissed us because, even though I know in my heart I'm supposed to have His peace, who doesn't need to be reminded from time to time? It was at least the second time this week I just wanted to look to the heavens and say "OK, God. I get it." So, again, I'm doing this the hard way and worrying for things I can not change. And while we can't choose our lots, we can choose how we respond to what's been given to us. Hopefully I can make this easier on myself and listen the first time.

Samuel's YouTube debut

2008-04-22T22:57:00.000-07:00

Welcome to our new blog page! I decided to try this out since I can easily post pictures here. First things first: Samuel. He is such a character! He is rolling over (no more laying him on the couch or the bed!) and trying so hard to move around. He is just getting ready to figure out how to push his legs but he still doesn't get anywhere. This, however, does not stop him from getting into things. Even when we are holding him he is so squirmy and looks for things to get into.

Today I had him on the kitchen counter in his Bumbo chair. I was standing in front of him and he managed to get to the canister of tea bags. Big deal, they are just tea bags, right? He took the lid off, pulled about 1/2 out and decided to see what was so great about tea and sucked on two of the bags. Like I said, I was watching all of this but he is still so inquisitive.

He is working on some teeth. None coming through yet, thankfully, but they are right there. Samuel is also starting to notice when he is left alone. The other morning I woke to him playing in his bed. He was just talking and being so nice. I decided to go brush my teeth before getting him up. Bad idea to him. He saw me walk by and quickly went from a happy baby to an angry baby. He does this when he is playing in his saucer too! I walked by him the other day and didn't pick him up or really even acknowledge him on the way by. This really hurt his feelings.

A few days ago he was laying on the guest bed and Kevin and I were just hanging out in the office. I decided it was a good time to try to get some video of Samuel. Good thing! In 4 minutes, he did just about all the cute things he's doing now: playing with his feet, sucking his thumb (so bad, I know!), sucking his toes, rolling his "R"s, just being a cute baby! You can check it out for yourself on YouTube. Just search "Samuel's Talents".

The Great Strides walk is in just a few days! I've been trying to get ready by walking more lately, which Samuel absolutely loves! What a treat he is in for when he walks with 500+ people on Saturday at Kiwanis park. I'm so pleased to say Team Samuel made it's goal! Thanks to ALL who donated so generously to support such a great cause. I am confident the CF Foundation spends all it's money frugally. They frequently remind us they operate on a dime, literally. Of every dollar donated, 90 cents goes toward research for a cure and drug development for treatment plans. If you haven't had the opportunity to donate and would like to, it's NOT too late! Go to cff.org/great_strides/ericakelley and you can do everything there.

Thanks again for checking in!

Happy Easter!

2008-03-24T00:00:00.000-07:00

Happy Easter Monday! It is spring and the weather is so nice here! We had a fabulous Easter Sunday, Samuel's first. One day last week I was holding Samuel and we were talking, as we often do. It was the perfect time to tell him about this special time of year and how we celebrate Easter and what it means to us: Our Savior is NOT dead! Samuel was just as excited as I was, laughing and enjoying my story. It's such an honor to share such good news with him. I'm happy to have that responsibility.

Even though Easter was like a spring-time story, Kevin and my spirits were a bit dampened when noticed Samuel was not his usual self. He fell asleep during song service and was very lethargic all day; not normal for him. In the evening he started getting fussy and I noticed he felt warm. After I took his temperature, I was shocked to see it was 101.5! We had a doctor's visit scheduled for this morning so I decided to give him some Tylenol and wait until the morning. Samuel is so smart! He learned that if you go to the doctor with a fever, you can't get any shots. I told him not to get any ideas, he still has to get them eventually. But there is some concern as Samuel does have a cough and his throat is irritated. So instead of getting his Synagis shot (vaccine for RSV), he got some antibiotics and increased breathing treatments. And lots of TLC from his momma! Even though we know he isn't 100%, as long as his fever is under control, he is in very good spirits. I told Kevin if this is his "I'm grumpy and sick" mood, then I can handle it. Other news from the doc: weight is up still (even more) and that impressed the P.A.

Every time we go out, I am reminded of how a baby changes EVERYTHING! I'm happy to do it but there is no such thing as "running out" for a minute any more. This weekend Samuel and I attended a bridal shower for a friend from church. I was a little frustrated because we were late but that is the story of our lives now. Late to everything. But this shower was exciting as I got to share a little about Samuel and his story with some ladies I met there. Each time I tell it, I'm reminded of how awesome the hand of God is in his young life. And although it can bring back painful memories of the day we got the news, sharing his story, I believe, is just the beginning of the miracles he will witness in his life. I'm so excited that even though Samuel is so young, he is still a tool to uplift the faith of those he meets. I pray he continues to be fully used in this way until God's plan for him enters the next chapter.

Thanks for checking in. And, of course, we STILL believe!

We've been busy!

2008-03-18T00:00:00.000-07:00

Thanks for checking in at SamIAm. As usual, Samuel is doing just wonderful. Tuesday, Mar 11, Samuel had his four-month appointment with the pediatrician. He had to get 4 shots! Luckily, his doctor has one of the best nurses when it comes to giving shots and Samuel didn't realize he was supposed to be crying until the third poke. He cried for about 20 seconds then decided it wasn't worth it any longer. I was so impressed. He is getting so big! He weighs 16 pounds, 6 ounces, in the 75th percentile. He is 25.5 inches long, also in the 75th percentile. His head is 17.75 inches around, and that is off the charts, in the 100+ percentile range. The doctor says it's all those brains!

Samuel has been growing and changing so much! He can sit with some support so he has been spending a good amount of his play time in his exer-saucer. About 2 weeks ago I realized that he was sitting so well and thought I'd give it a try. At first he was overwhelmed by all the toys and colors but quickly jumped in and now loves to play. He has also learned to pull on the toys that hang from his car seat handle. When pulled, one of the toys vibrates as it goes back up, shaking the rattles in it. On the way to church the other day he looked at the toy, pulled it and put the foot of it right in his mouth. Thankfully, he doesn't have teeth yet or it would have pulled them out! Speaking of teeth, none yet, but it won't be long. He is a regular drool making machine.

On Friday, March 14, Samuel was supposed to have an infant pulmonary function test (PFT). His pulmonologist has been wanting to get this done for a little while. This is to gather some baseline results to monitor his disease and evaluate his response to treatment. Alas, Samuel did not want this test done on Friday and because I'm constantly amazed at how frequently Samuel gets his way, we are going to wait. He was hungry and tired, but not tired enough. Just when he was hooked up to the machines, he would wake up in distress and the doctor, nurse, and respiratory therapist would have to back-track to get him back to sleep and calmed down enough to try the whole process again. While the day was stress filled, it wasn't an entirely wasted trip. We were able to spend some time with another pulmonologist at Phoenix Children's Hospital and discuss a study they are going to start in the next few month. When we meet with Samuel's regular CF doctor on Thursday, March 20, we will talk about his possible participation in the study.

Thank you all for your continued support of Team Samuel and the Cystic Fibrosis Foundation. I am happy to report that I have met my personal goal for our Great Strides walk. This is all because you all made it happen! While this is exciting for me, we still have a little further to go before our team meets it's goal. Thanks to all who participated in the "Dough Raiser" at NYPD Pizza on March 17. With our determination and creativity, I'm certain that we will exceed our team goal. In the mean time, let me just say thank you to those who have generously supported this cause. It may surprise you how little government funding CF research receives. I promise to do all I can so that "lack of funding" is never a reason a cure can't be found! And, of course, until then, funding will continue to improve treatments for Samuel and all those whose lives are changed by this disease.

We STILL believe!

Great Strides with Great Strides

2008-02-07T01:00:00.000-07:00

Hello, Samuel's uncle here! This is my first time posting to this web site! We hope you're enjoying keeping up with the big guy!

As you may have seen from Erica's post the other day, she has formed Team Samuel to walk in the Great Strides walk on Saturday, April 26, 2008. The Great Strides walk will raise money for the Cystic Fibrosis Foundation, which will go towards research and development of a cure for CF, and to improve treatment methods for CF patients.

As of the time of this posting, Team Samuel is at 70% of the $1,500 goal! We would love to be able to not only reach that goal, but to exceed that goal in a HUGE way. You can make that happen! Please donate to Team Samuel! It's quick, easy, and above all, will help Samuel and others like him!

Click Here to Donate to Team Samuel
Also, ask others to consider making a donation as well. There are lots of good folks out there who would love to give to a great charity, they just need to know what to do. Tell them about Samuel, and how they can directly impact the treatment of the big guy. I'm sure they'll do it, all you have to do is ask!

Great Strides and sleeping

2008-01-29T01:00:00.000-07:00

Thanks for checking in at SamIAm. Samuel is doing just wonderful. We have a follow up appointment on Wednesday the 30th at Phoenix Children's so we will get an official weight then, but our best guess is about 13 pounds, 8 ounces. His face is so round and he has more chins than I can count. It's really bad when he gets milk stuck in the folds of his chins. It's so hard to get dry so it stinks before too long. BUT he still smells like a new baby. I love to hold him and just sniff his head. He is so easy to love! Unless it's 3:00-6:00 am!

While Samuel has been sleeping mostly through the night, the other night he was awake about every 20 minutes. Kevin was sleeping soundly, I was not as I was up and down all night tending to Samuel. Apparently, one time Kevin did wake up and was laughing at me the next morning for my comment. I didn't say anything mean to him, although I often want to wake him to tell him it's his turn. He thought it was funny that of all the things he thought I should have been saying, like "I'm so sleepy", I said "I just got warm!" The evenings here have been very chilly (for Arizona) and I hadn't been able to get warm that night. When my feet finally thawed, Samuel needed my attention. And I DID still want to sleep (who wouldn't?) but I knew that getting out of bed would mean getting cold again. No fun!

I admit it, I'm so proud of Samuel. He will be 3 months old on Wednesday and is really filling out his clothes. He is so alert, laughing, and holding his head up on his own. Just yesterday he was laying on the couch, watching me fold laundry and rolled over to his side. I'm not sure if it's because it was slightly downhill, but I was very surprised! He also enjoys watching sports with his dad. Friday, while I was finishing my housecleaning, he sat in his swing and watched some Baby Einstein. Samuel is also really enjoying "Old Blue". Old Blue is a cross between a blankie and a stuffed animal. He likes playing with it because it rattles and the edges are satin. Also, he has taken a deep interest in his thumbs. Sucking his thumbs. Usually, one at a time, but he has been known to stick them both in his mouth. The pediatrician said to replace his thumb(s) with a pacifier because, in a year, we can take that away. I'll have to ask the doctor what to do when he spits the binky out and puts the thumb, or thumbs, in.

Before I sign off, please let me appeal to you to support our Great Strides team, Team Samuel. I have formed a team to walk on April 26th in Tempe, AZ, and set our team goal at $3,000. I KNOW there are so many people that support Samuel. With your help, I would love to be able to exceed my goal this first year we are walking. To learn more about Great Strides, donate to the team, or sign up to walk with us that day, visit www.cff.org/great_strides/ericakelley. This is not just for Samuel but for every child and family just like ours who has to deal with CF every day. This supports research to not only find a cure, but, until then, improve treatments. Thanks for your support of Team Samuel and the CF Foundation.

Check back next week for an official weight update!

Believe

2008-01-24T01:00:00.000-07:00

Before I get onto all the sappy stuff, here is a quick status on Samuel: He has grown 2 inches and gained so much weight! He has rolls now! As of December 26, he weighs 11 pounds, 3.9 ounces. The doctor at PCH said his weight gain is "phenomenal". We are doing breathing treatments once or twice a day along with some chest physical therapy, also called CPT. He doesn't mind the treatments so much right now, which is the purpose. While he doesn't NEED them, it won't hurt anything and will get us all in the routine if he ever does need them. Aside from the CF concerns, Samuel is doing excellent! He's starting to sleep longer hours, a welcome relief for me and Kevin. We aren't looking forward to next week as he is getting shots on Monday and Friday. First, his general immunizations and then his second RSV vaccine. 5 pokes total. Again, I'm not excited about it.

During this Christmas season, it has been refreshing to remember how good God has been to us this past year. We have been so blessed, it seems like something else is working in our favor every time we turn around. While I have never had to worry so much about where my next meal is coming from, I'm experiencing how God is a provider on a different level. Since that first day at Phoenix Children's when it seemed the world was crumbling out from under me, God was providing. It seems that this condition can cause a financial strain, as most can, and I have decided to stay home to take care of Samuel instead of exposing him to all the grime that is inevitable with most day care operations. We are enrolled in a program called CareFirst, offered by the drug company that gives us Samuel's digestive enzymes through his second birthday. These are essential for him. We've also received a hospital grade air purifier, and his air compressor was for a nominal fee. There are countless ways we have been blessed through the generosity of others and for that, I will forever be thankful.

I don't know how many there are, but there are people all over that have been praying for Samuel and our family. Even if I didn't know because we were told, I would still know because there has been some unexplainable peace and strength I've been experiencing. There is absolutely no way I could get through the day on my own. Thank you for your prayers for our family. And thanks be to God for His grace and mercy that is truly new with each morning.

This year at church and in our family we have a theme: Believe. We've never had a family theme before but this year it was called for. Mark 9:23 says "If thou canst believe, all things are possible to him that believeth." Since the day we received Samuel's diagnosis, we have believed that God is capable of a complete healing. I know He is able. And I DO believe. But in the very next verse, Mark 9:24, the father of the sick child responds to Jesus saying, "Lord, I believe; help my unbelief." Just his statement tells me there was still a shred of doubt. Oh, how I can relate to that man! I would love nothing more than for Samuel to be healed and not be plagued by the problems of cystic fibrosis. That being said, if God should choose NOT to heal Samuel, that is OK. It's OK with me because I know, no matter what, Samuel will be used to God's glory. He is a miracle ANYWAY! And he's not named Samuel (meaning "asked of God") by accident. I don't think God would have given him to us if there wasn't a divine plan for his life. Just him being here, he is a miracle. I don't know how and I don't know when but someday, somehow, Samuel will be used by God and to His glory. I just can't wait to see how it's going to happen!

Awesome video from Samuel's dedication

2008-01-04T01:00:00.000-07:00

Adam Olson at StationOne Productions is the man. He made a really cool video from Samuel's baby dedication, then was nice enough to send it over so we can include it here on Samuel's web site! If you would like to watch it, simply click on the link below:

Thanks so much, Adam! Great work!
***************************

Wow, our friend Adam Olson at StationOne Productions doesn't quit! He made a top-quality screensaver, consisting of photos from Samuel's baby dedication, which you can download and use on your computer.

I'm guessing this is for Windows computers only. To install this screensaver, first download the following Zip file (click to download):

Next, unzip the downloaded file, which will contain two files. Save those two files to your Windows directory. In the control panel, under display properties, update the screen saver to this one, which will be named something like "SamuelKelleyScreensaver".

Again, thanks Adam for a job well done.

Screen Saver

Welcome to Samuel's website!

2007-12-20T01:00:00.000-07:00

Thanks for visiting samiam.info! We trust you will find some helpful information about cystic fibrosis (CF) while you are here and learn more about this disease. Of course, we will try to keep updates about Samuel current so that you can know what's going on in his young life.

To date, this is what we know: Samuel has cystic fibrosis because both Kevin and I are carriers of the gene. The CF gene is recessive and, just like passing on blue eyes, it takes both recessive genes to manifest itself. Thankfully, and almost miraculously, the state of Arizona began requiring newborn screening for CF and other genetic illnesses on November 1, 2007. Because of a minor issue discovered during my pregnancy, we had to stay in the hospital for 48 hours after he was born, instead of the usual 24. This put us leaving the hospital on November 1, therefore requiring the screening.

When Samuel was 2 weeks old, we took him to Phoenix Children's Hospital (PCH) for a sweat test. The next day we met with Dr. Adrian O'Hagan and the CF team at PCH and received the news confirming he did, indeed, have CF. We were there for a while learning just a little about the disease and what it meant for us right now. They gave us some medication for Samuel to help him digest his food and gain weight. We also got some orders to test his pancreatic enzyme production. This revealed that Samuel does not excrete the necessary level of pancreatic enzyme necessary for proper food digestion. To treat that, he takes pancreatic enzymes before each meal, which, right now, is every couple hours. We also do breathing treatments twice daily with a nebulizer and some chest physical therapy. Samuel is responding wonderfully to the treatments he receives.

Until his miracle comes, we will continue to follow the treatment planned for him by Dr. O'Hagan and the team at PCH.

More updates soon!