We broke 30!

I'm not sure how this is such a surprise, but Samuel has finally broke 30 pounds! Since his last 2 visits he was stuck in the 29 range, I was sort of expecting the same this time. Even though I know he's grown in height. But, anyway... we are celebrating!!!

And, if that wasn't enough, today we closed the study book and turned in the giant bag of empty HTS study vials. After a year of 2 plastic boxes occupying my kitchen counter (1 for full vials, 1 for empties), I can now clear that spot for a little while and enjoy not completing surveys every Tuesday night. Well, at least until the next study.

In spite of the great news, we still talked about a g-tube for Samuel. See, in addition to gaining a little weight, he also grew an inch, not changing his place on the growth chart very much. Actually, I think it dropped a little. Even though he's still "borderline"we are having the same conversations at every clinic visit. At this point, it's still our decision. I'm fearful that one day it won't be our decision anymore. While I don't consider myself as one who keeps her head buried in the sand, I'd rather not think about how a tube will change our lives forever. We will keep doing what we're doing and hope for a miracle!

Yesterday's CF Clinic

Yesterday was a clinic day for Samuel. I'm not quite sure how it had happened, but his last clinic visit was several months ago...maybe 4 or 5? Don't fret, he's been seen at this HTS visits by his usual physician. But yesterday he saw another CF clinic team member, the nurse practitioner. Wait, let me back up.

Since Samuel was little, he's had trouble gaining weight. First sign something was up (if you don't count the time the doctor said "Your son has cystic fibrosis") was his inability to get back to his birth weight at the usual 2 week mark. He takes enzymes and those help but his daily caloric goal is 2,000+. Yes, that's more than I need. I'm not a betting gal, but if I were, I'd put money on this: He's never reached his goal in one day. Ever. In which case, it's pretty impressive he's doing so well maintaining his weight...what with all the running he's doing. every. single. day. Just ask his Papa E. Our vacation was filled with the phrase "Chase me!"

Kevin and I have always joked that we knew how concerned the nutritionist was with Samuel's weight gain (or lack thereof) based on what order they came in the room. If the doctor came in first, not a huge deal. If the RD (registered dietitian) came in first, we knew he didn't meet his goal. I'm pretty sure we've seen the RD before the MD since he was about 10 months old and yesterday was no different.

For those keeping track, our most favorite CF doctor, Dr. O, moved away and Samuel had to get a new one, Dr. R. Dr. R is great, but my oh my, Dr. O set the bar rather high. At our final visit with Dr. O in February, he was the first to mention a g-tube. Of course, at the time, this was something that we did not want for our son. We've still tossed the idea around but we aren't making appointments with surgeon or anything. The team still wants us to consider it, even though Samuel's situation is so variable. Technically, his growth is normal. His weight to height ratio is putting him between the 10th and 25th percentile. Totally normal for a typical child. Unfortunately, Samuel isn't quite typical - with CF and all. We understand this could be just what Samuel needs but have some more research to do to see if it's the best decision for our family.

I'd like to take this chance to say WE STILL BELIEVE. Well, ok, to shout it out.

Of course we still believe. We never gave up believing. And, thankfully, I know a God who can and who does every single day. He's in the miracle performing business. And, furthermore, it is my belief that until God chooses to do something fabulous through Samuel, it's my God-given responsibility and commitment to my son, to make sure he is (and we are) faithfully doing his treatments, taking his meds, and doing the absolute best we can to treat his disease. It is my belief that God has let this (CF) happen to Samuel and our family. It is, after all, something we all deal with, not just Samuel. It is also my belief that God gave someone, scientists...researchers...doctors, the knowledge and ability to come up with drugs and treatments to extend the lives of people with cystic fibrosis. In my opinion, it would be foolish to ignore those drugs and treatments, or even to ignore the diagnosis. Sounds crazy, right? I've heard of it happening.

Until then...

My CF Grocery Store

While in the grocery store the other day, it occurred to me there are time when I have to shop for our family and there are times when I have to shop for Samuel. This isn't anything new but a funny thought hit me in the dairy aisle.

I was looking in the refrigerator trying to find the best deal on the largest container of half-and-half for Super Milk (4 oz. whole milk, 4 oz. half-and-half, and a packet of Carnation Instant Breakfast) and had the thought "Why doesn't the grocery store sell half-and-half in a gallon container like milk?" Then, just as soon as I had the thought it came to me: "Uh, E, most normal people don't go through half-and-half as quickly as milk. Duh!" Then, keeping in stride with the conversation - with myself - I answered and said, "Well, in my grocery store...in my CF grocery store...half-and-half comes in a gallon jug." Up to this point, people around me didn't know about this private conversation going on with myself, thankfully, in my head. I couldn't help but chuckle at what a silly idea a CF grocery store is. As I made my way over to the 12+ foot refrigerated section of yogurt, I was delighted to have 2 choices of whole milk yogurt for Samuel. Just like before, it came to me. "In my CF grocery store, there aren't any low-fat/non-fat yogurts."

It didn't take long to get me on a roll, so I made a list of the things in my CF grocery. Well, I didn't make a written list, but I did give it a little thought. In addition to the items above, here are just a few things that will be in my CF grocery store:

•  Boxes of "Just Yolks" will be on the shelf next to "Just Whites" to allow the chef (HA!) to create their own ratio of yolk to white as needed.
• No part-skim cheese. Only whole milk cheese.
• Frozen vegetables with butter sauce in a 1 lb. to 1 lb. ratio.
• Salted...uh...everything.
• The widest selection of dips like, ranch dressing, peanut butter, Nutella, sour cream, cream cheese...pretty much anything to add some extra flavor. And calories.
• Full fat ice cream. REAL ice cream. In any flavor you could think of.
• There is no such thing as turkey bacon. Or turkey sausage.

These are just a few items. But I'd love to hear what you'd have in your CF grocery store!

Some highlights from vacation

Lacking Inspiration

I've been lacking inspiration to blog recently. I bet you couldn't tell. :)

Actually, what probably happened was that I was so excited and looking forward to our family vacation that I didn't allow much else to occupy my spare time. In total "Elf" fashion, I've been looking forward to vacation so that first we would make sand angels, then build a giant sand castle, then relax on the beach towel for 1 hour, eat a half gallon of ice cream as fast as we could and top it all off with an evening swim. Now that it's over, it's back to reality. Back to running. Back to potty training (which took a fabulous turn for the better while we were away). And back to the grueling ways of the CF mom. The grueling ways are just means to stay up with his disease. Sometimes it seems like we struggle to just keep up, let alone try to make headway.

I love Samuel. Of course I do! Who wouldn't? I love Samuel with CF. (I don't care so much for CF by itself, but it's here and not going anywhere soon.) But all breathing treatments aside, I feel like menu planning and dietary needs are slowly taking over my life. Except it's not as slow as I'd like. If my "job" had a description it would probably be something like this:

• 50% - "normal" mom things like playing cars, cleaning up toys, hygiene
• 20% - breathing treatments, cleaning neb cups, refilling prescriptions
• 32% - obsessing about food. What would he like to eat? How is the best way to prepare it? Will it provide enough calories/fat/protein to meet his needs? 

I know that equals more than 100% because sometimes there is an overlap. I think about his nutrition while I'm doing those other things. Yes, it's safe to say, "Hi, my name is Erica and I'm obsessed with food".

It has been a sort of blessing in disguise as a dear friend is fighting a battle against cancer right now and has a challenge to meet some lofty caloric and protein goals on a daily basis. Like most of us, this is a bit foreign, so it's been really nice to share some tips and tricks I've learned trying to meet Samuel's needs. I'm happy to share and so glad all my silly cooking experimentation is not in vain.

Samuel has a clinic visit in a week. Obviously, to say his weight has been on my mind is quite possibly, the understatement of the year. From March to June (?) or July (?) his weight stayed the same. I'm not sure which month it is. They all run together sometimes. At any rate, his weight was stuck at 28 pounds. Not even an ounce gained (or lost!)...ThankYouJesus.

We will see what our next step in God's plan is next week. Of course, I will update at that time.

Update on Samuel - Not much to update

It was a little over a week ago that my Mac, well, I'm not sure what happened, but it stopped working. Long story short, the hard drive stopping "spinning" as the Genious said. So the bad news: everything on my Mac from the last year was lost. Pictures, work, images, iTunes (I'm not convinced all iTunes purchases are lost I just haven't figured it out yet) all lost. The good news: the Mac wasn't even a year old and all parts were covered under warranty so I got a new hard drive installed at no cost. Thank you Jesus! :)

Update on Samuel- Swim Fwim lessons are over. Thankfully. He did quite well in my opinion, but by comparison, um, he passed. He went underwater, attempted to hold his breath for a split second, and, um, that's about it. Floating went uh, ok, it didn't go well at all. But it's over. We didn't drop out (which would have been OK, but not what I wanted) didn't skip a class or were even late. We stuck it out. It's finished for now. We will try again for Michael Phelps-like swimming abilities later.

And speaking of sticking with it... I'm SO glad we stuck with the Storytime Arts and Crafts class. He loves his class! Even last week he was so sleepy and was snuggled up with me before class. I was a bit unsure of how it would go but when his teacher invited the kids into class, he was very excited. On his way through the door, he said the obligatory "Bye Mommy!" without looking back. I'm happy he's gaining independence but sad at the same time.

He's saying lots of other funny things. Like when he holds up his index finger and says "I GOT it!" like he's just had the best idea. Or my favorite is when he folds his hands in his lap and says "Soooo...." I started responding with "What do you want to talk about?" and now he says both and usually answers his own question too. His usual response is "Let's talk about daddy!" He was really surprised when I told him a secret about his daddy. I said "Daddy is my best friend." He looked at me a bit surprised, and said "Daddy your best friend you?" Well, yes, he is, if that's how you want to say it.

Operation silent auction donation solicitation is in full effect. As of now, we have one donation. Since I've got the computer back I can focus on that a little bit more. And I'd better if we want to have anything worth bidding on! Maybe that will be my focus this week. It's so hot (humid as well) that I don't even want to leave the house. OR maybe I can just mentally summon the donations to come to me.

Another first...one of the last

Yesterday Samuel had another "first". Just off hand, I think it might be his last first. I've been thinking about how I need to get him to the dentist for a long time...like...a year. I read somewhere, probably a parenting magazine, that their first dentist appointment should be when they have about 8 teeth. Samuel didn't cut his first tooth until after his first birthday. Actually, it was after he started walking. But it wasn't long and they all came in rather quickly. So he's had his 8 teeth for over a year. And that's about how long I've been putting off the dentist. Mind you, I'm not like most people and I don't really mind going to the dentist. It's not my favorite thing in the world, but as I've only had 1 cavity and never needed major dental work (except for braces), I don't mind my routine visits.

I was hoping it would be a better experience for Samuel. All in all, it wasn't bad. Our "check-in" time was 8:40 am. It took me about 5 minutes to do the paperwork and at 9:15, we were still in the waiting room. Not a big deal since their were more than enough trains and toys to entertain. Honestly, I think we could have stayed there all day as far as Samuel was concerned. But, around 9:20, things started to go downhill.

First, we met the hygienist, Natalie. She was great! Honestly, I think she was hand-picked for Samuel. Her mom had CF. She was familiar with the clinic doctors at PCH. They moved from Kokomo, IN to Arizona to escape the humidity for her mom's health. During all this small talk, we tried to get 2 x-rays of Samuel's teeth. Funny! We got 2 crooked pictures that actually weren't that bad, considering he was squirming the whole time but not how you'd normally see teeth.

Then, we went into the room were we discussed Samuel's meds, the effect it could have on his mouth health and pacifier usage. And don't forget the conversation about taking juice to bed. Natalie told me our action plan, meaning how I was going to hold Samuel down while she brushed, flossed and fluorided. Then the dentist would come in and we'd do it again.... Repeat conversations and wrestle the screaming boy.

At the end, good news all around! No cavities! I hope he inherited my enamel-of-steel. He's got one more tooth coming in (explain his constant runny nose?) and our brushing method is approved. Our method: 2 toothbrushes, 1 for him, 1 for me. He has his turn brushing, then mommy takes a turn brushing. It works for us. Even though he was NOT a fan of Natalie and the dentist, all was forgiven when we came out of the exam room and he got his token to get a price. He chose the bouncy ball. And he even got a blue balloon that lasted more than 5 minutes! It ended up on the ceiling of our next errand stop but it was OK.

All around, it was a busy day with the dentist, his story-time arts and crafts class, which he now loves, and fwim lessons. Since Samuel has become LOTS more comfortable in the water, we started him in swim (or, as he says, fwim) lessons. By the word "lesson" I mean, play. There is just 2 other boy in his group lesson, which lasts for 25 minutes. The other little boy is the same age and a natural fish. Samuel just wants to play with the toys while I hold him. A bit annoying but what am I going to do, leave him alone in the water? Since it's Monday-Thursday for 2 weeks, I'm hoping it will at least help him get some idea of what to do in the water. I can see, though, that our work is not even close to being over.

I suppose that's all for now. More news to come, I'm sure. More news like, how I'm doing on this C25K thing and eventual 1/2 marathon training. It's fun but not in the heat! And I've been having a hard time getting out of bed that past few days.

Oh, and no pics today. Sorry.

CF + Cold = Sick?

WARNING! I talk about puke. In fact, replace "sick" in the title with "puke" and that's what I mean. If you don't want to read about vomit, turn back NOW!

My son is going to be 3 in a few months. While he's learning to verbally communicate, he's still only 2, so getting him to tell me things like "I'm going to throw up" is not happening right now. That being said, can I get a little help from my older CF pals?

Here's the story. Samuel has been sick for a few days. Mostly a cold. I would guess he has a sore throat because his voice is very raspy. It started with a cough (surprise!) and went on to a runny nose and eye thing. The symptoms are better, except when he starts on his hypertonic saline (which I can only guess it's HTS...we are in a double-blind study). When he is well, he can do 15 minutes of HTS in his sleep. No, for real. When he's not well, not so much. Hoping to get 10 minutes in last night while he was asleep was a pipe dream. He started coughing immediately, which is fine. I like coughing. It clears things out, right? But, after about 5 minutes of HTS, he started gasping for air. He woke up freaked out, as we all were trying to figure out what to do. Then it started. The vomit. Luckily we had a bucket close by but still made a bit of a mess. This, by the way, is the second night in a row this has happened, except the gasping part.

In the midst, dear husband asks "So is this what we have to look forward to?" Based on my limited knowledge* I answer "Yes, I think so". But I thought I'd ask my pals with CF who CAN communicate to give me some insight.

Is this normal?

Do you get sick to your stomach when you are ill?

Is this just happening because his secretion management is nil? 

HA! Those questions rhyme and I wasn't even trying! :)

Thanks for your help. I'm hoping to NOT clean vomit out of a vest tonight.


*I should say, I have somewhat limited knowledge because I choose to focus on what we are dealing with today. If I thought about how bad things are going to get all the time, I'd never get out of bed. For me, it's just easier to sorta think about CF and it's complications on a need to know basis.

Here we go again - And a BONUS rant!

First, I want to offer my condolences to the Jones family. Conner, seven years old with CF, went to his permanent home with Jesus a few days ago. Mere words escape me and seem so frivolous anyway. To say "Conner lost his fight" implies that he didn't fight hard enough or he didn't do enough. Even though Conner was only here for a short time, his life touched many. His spirit, determination and caring ways are an inspiration to many who have been here long enough to have learned the lesson long ago.

I can't imagine loosing my child to such a combination of cystic fibrosis and Prune Belly Syndrome, as Sarah, Conner's mother, has. Again, not even sure how to put my thoughts in words. It's not total sympathy because no doubt Conner is in a better place were he doesn't have to fight to breathe or even worry with having the strength to move. But our selfish, earthly ways can't help but want to keep our little ones with us as long as possible. I simply pray that God would continue to comfort the entire family through this time...that He will give them peace.

As they say on the Today show "On a much lighter note..."

We've started gearing up for the first TeamSamuel silent auction in the fall. Funds raised from the auction will go toward the Cystic Fibrosis Foundation. I'm hoping for some great donations and lots of eager bidders. :)

During lunch with my friend on Friday, Samuel let out a big ... cough. A big, fat, wet, productive cough. While I noticed, I didn't want to hear it. He's not supposed to cough yet. But he did. And he has been. By this evening, he's got a (clear) runny nose that is like a faucet, red, watery eye and a 101.3 fever. After a long nap this evening, he gained his appetite and got back to his normal, 2 year-old ways. Hopefully it's just a quick bug that he'll be able to fight off on his own. That would be ideal. But, as timing would have it, we have a hypertonic saline study visit on Tuesday where he will see his regular CF doctor. She will give us some direction as to how to treat this. And, not that I want him to be sick, but by Tuesday, if it's something to really worry about, it will be obvious. Right now, it's still a cold (as if that's not bad enough).

Last post I asked the question: When did it become OK for moms to judge other moms for the things they do or decisions they make? Either I'm oblivious to it, or just don't care, but it hit me a few weeks ago that some moms out there feel like they are constantly being judged by other moms. The particular situation my friend and I were discussing had to do with nursing in public. She had chosen to not try breastfeeding, preferring to formula feed her two children. Now, after the research I did, I chose to breastfeed (sorry if this is too much info, but I'm getting somewhere). Honestly, it was one of the best decisions I've made, but it was right for me. Other moms think other things are better for them. Good for them. I am not the wellness police and while I do not understand why a mom wouldn't even try it, I'm not going to think less of her or judge her for her decision. Maybe I think others think like me. 

But then a funny thing happened: I started to notice it going on around me. I follow a popular mom blog on occasion and saw a picture she had posted of her 4 children, all under 4 (I think) at the Childrens Museum. Her children seemed clean, fed, dressed and having fun learning at the museum while spending time with their 1 mom. I mention the ration of children to mom because I have 1 of my own and keep one more most weekdays, ages 2 and 9 months. While I'm not ragged, it's a bit of a handful and it takes some planning, not to mention tons of patience, for a trip to the library. So, from my persepctive, you can imagine my awe that she would take 4 children, by herself, to a place where kids run and play and all WITHOUT a stroller. As I saw the picture, something like "SuperMom" crossed my mind (disclaimer: I don't think most mom bloggers are SuperMoms. But some have it together and I admire that. I wouldn't call someone I don't know personally, have never met, a SuperMom. The ONLY SuperMom I know is my very own mother. And you'd say she is SuperMom too, if you know her.) Back to the picture. Another one of her followers was the first to make a comment. Unfortunately her comment was something to the effect of "Please tell me that's not one of those awful kid leashes that only terrible moms use when they can't control their children." Maybe not exactly like that, but that's what I read. I thought, "Here is a mom of 4, taking her kids to a museum. They are having fun. They are under control. The leash is off. It looks like he's wearing a backpack. Give the mom a break." And that was just one instance. It's popping up everywhere and it's driving me nuts. To me, it's not OK to make a mom feel like her best efforts or her decisions are good enough for her children. Not sure about you, but I didn't get the manual from the hospital so I'm still trying to figure it all out. Sometimes I get it wrong (usually on a daily basis) but I learn from those mistakes and move on. You know, we all are learning. All that being said, why can't we just give each other a break every now and then. And if you see my son in one of those terrible backpack kiddie leashes that help keep curious kids from running away on the day I decide to brave the childrens museum with my one (possibly 2) child(ren), you can just smile and say "Looks like you guys are having fun today!" because we probably are.

Better step it up!

It only takes a little act of kindness by someone to remind me I better step it up on the updating of my blog. Apparently, small favors are repaid by posting someone to a blogroll. I had no idea. And because I'm now in another (or maybe this makes one...) blogroll, I should probably update said blog.

So, here's what's happening the land of the CF Mommee:

1. We have held off on transitioning CF Boy to a toddler bed for several reasons. 1, he has no reason to get out of bed in the night as he is not yet potty trained. Yet. We are making headway. And this is good. And 2, um, well, who really wants their 2 year-old trashing the house while the parents are trying to sleep. That's what I thought too. But, potty training is going fairly well. First stop out of bed in the morning is the potty. He's got it. During church yesterday he said he had to go to the potty, and he did! By the way, I take those requests very seriously because I don't want him to think he's got to tell me 50 times before I take him. And I really am getting sick (yes, sick) of changing poopy CF diapers. Not sure how we can cover the entire spectrum of poo consistency in one BM, but... Yeah, enough about poo!

2. Since I've been trying to tackle all toddler issues at once, issues like big-boy bed, potty and ditching the binky, I'm making headway on the other, not mentioned above. Binky at bedtime only. He can sound so pitiful asking for it. Yes, I know. When they ask for it then it's time for it to go. He says "I need a binky! Pleeeeaaase?" I try to remind him, only at naptime. Then say "Are you ready to take a nap?" His response is something like. "I'm sleepy. You sleepy too?"

3. Class. He's got Sunday School down so I thought it would be good for him to be in a toddler class. I signed him up for Storytime Arts & Crafts. One day a week for 45 minutes. NOT a Mommy-And-Me style class. First week, he made it until the last 5 minutes then the teacher came and got me. Not too bad. He just wanted me in there while he colored his picture. Second week he stood at the door and cried. 20 minutes in, the teacher came and got me. Tomorrow is week 3. We will see if they change it to a mommy-and-me class yet!

After prayerful consideration about the needs of CF Boy, and the mental needs of this CF Mommee, we have decided to give homeschooling a whirl. That makes it sound like I decided to do this on a whim. Not so. I think most people consider homeschooling because they want to make sure their children are taught what is honest, true, pure, and keep them from the dangers of school like exposure to drugs, violence, and other potentially harmful moral issues. I realize I'm making some very broad generalizations but just stick with me for a moment. Along with my husband, I am considering homeschooling the boy because I want to keep him from harmful germs (as much as possible) and knowing that, one day, hospitalizations will come and school will still be there, hospital or not. What better way to keep up with school work than if it's already at home! Oh yeah, and there are the other things that "normal" parents consider as well. I think we can all agree we just want what's best for our kids.

Which reminds me... Please leave me your thoughts on the following, uh, thought:

When did it become OK for moms to judge 

other moms for the things they do or decisions they make?

Just to be clear, I don't feel I have been wrongfully judged. Please leave me a comment! I'd love to know your thoughts!

And because the update wouldn't be complete without some photos...

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...

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.