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.