Mommee's Letter to Samuel

Dear Samuel,

You are in the terrific twos! You are such an awesome little boy. So smart and learning more every day. You say the funniest things and are trying to learn knock-knock jokes but don't quite understand. "Knock knock." "Who's there?" "Daddy's home!" You are a kind and loving little boy with a love for others. You are determined yet keep a sweet spirit.

At this point in your life you have a deep interest in trains, big trucks, Hot Wheels cars and bounce houses. I'm still cool and can remove pain with just a simple kiss. You still have your favorite blanket and take a binky. It's OK. I know it will be gone before you go to kindergarten.

You are starting to notice that you are the only one in the house who gets hooked to machines twice a day and have to take pills before you eat but I don't think you care yet. Every once in a while you say "Mommy's turn!" and put the mask to my face, in which I oblige you for a few minutes because I want you to feel like this is normal. Because it is normal. For you. Until we find a cure, you will do this at least twice a day for the rest of your life. Until that day, you'll take a handful of pills several times a day and always look for the highest calorie item on the menu.

One thing you've been saying lately that I wish I could permanently remove from your vocabulary is "I can't do it." Don't ever say you can't do it. Say "I need help." There will be people who mean well but will quickly tell you you can't do something. Don't listen to them. You can do, and will do, whatever you want to (kinda like you do now because you are two!). Whenever that day comes, and it will, please remember this verse: For I can do everything through Christ, who gives me strength (Philippians 4:13).

I love you so very much. You brighten each day and renew my hope for the future. You are such a refreshing face for those around you. I pray for nothing but the best for you every day and will fight for it with everything I have.

You are such a precious gift from God and you always will be.

With all the love in my heart,
Mommy

Great Strides #3

Today was our third year participating in Great Strides, the Cystic Fibrosis Foundation's annual fund-raising walk. Although the location had changed, the sunshine that greets us every year was still present. And our faithful few were, well, a faithful fewer.

I'm really torn with my participation. While I feel like it's the right thing I need to do, even like I should be helping the cause, convincing others is becoming more difficult. Perhaps it's the economy, perhaps I'm not annoying enough, but this year has been the worst for getting people involved. Not just walking with us, but participating by donating to our cause and asking their friends and family to do the same.

Let's be real. Times are tough. Tell me about it. But let me say this: We (the CF community) are so close to a cure. Even improving treatment is coming a long way. Earlier this year, a new inhaled antibiotic, Cayston, was approved for treating infections for those with CF. Cayston is used to treat Pseudomonas aeruginosa, a bacterial infection Samuel has had a few times. To treat this previously, we've administered another inhaled antibiotic, which takes 30-40 minutes to administer. Cayston takes about 5 minutes. You don't have to know Samuel to understanding that keeping a mask on the face of a 2 year old boy, while sitting still, without a binky, twice a day, is about as easy as giving a cat a bath. If you supported TeamSamuel in the past, know that this approval was made possible by your generosity. That's pretty exciting! We thank you!

While I know many followers of CF Mommee have Great Strides teams of their own, there may be a few who don't have a team to donate to. Maybe I've been too quite or you let it slip your mind. No matter the situation, it's not too late to contribute. In fact, we have until the end of the calendar year for it to credit this year's walk. Just click on the link below to be taken to my Great Strides page. And share this link with your friends. If you would like for me to write an invitation to contribute to TeamSamuel, I'll be happy to do so!

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 wore 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.

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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...