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The non-CF related trip to the ER

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.

1. a piece of cinnamon candy I shared with Samuel before his nap.
2. 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

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

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

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

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

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

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.

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

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

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

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!

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

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

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

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

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

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.

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

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.