Decisions and Faith

With Mother's Day just passed, I've really had one thing on my mind: another child.

Even before Claudy and I started having kids, we agreed that 2ish years in between each child was the optimum space.

My brother and I were around two years apart, and oh how I loved it!  I feel like it took much longer for my sister and I to click because we were six years apart and were always in such different stages in life.  Of course, the opposite can be true as well--but for me that has been my ideal.

Originally the plan had been to start trying for baby Lavin #2 this summer.  Then, Carter was diagnosed with his disease in February. 

And boy, what a derailment this has been.  Not only has it been a struggle to get Carter on track health wise--but I've learned that I have to worry about our next child having EOE as well.

I'm not a statistician to truly understand what this means in real life, and I'm sure that these are still probably guesses, but sources from my support group reported that the annual APFED conference (which is the conference for all eosinophilic diseases) said that, "...the risk for siblings [with eosinophilic diseases] was 60-fold over the general population".  There are many, MANY families that I've met that have multiple kids with EOE. 

Gulp.

Can I ignore that?  I just can't push it away.  Could I really risk putting another child through this?  On Carter's bad days, where's he's vomiting so hard that he can't breathe and it scares him so bad his arms are flailing I think to myself that I certainly cannot risk putting another child through this.  When I have to see Carter want to eat what his friend is offering him, and I have to swipe it away and he throws a fit not understanding why he can't partake--do I want to do that again? Can I do that again?

Part of it would honestly be for me.  The doctors appointments for Carter alone are already like a part-time job.  The task of feeding Carter can be overwhelming.  What if our next child does have EOE, and has a DIFFERENT set of foods he cannot eat?  How will I manage?  How will I keep everything straight?  How will I stay mentally sane?  How will I find the energy and strength?  How will I not endanger one or the other by a simple mistake or forgetting?  It's hard to keep eyes on Carter and make sure he never accidentally puts things in his mouth that he shouldn't.  I can't possibly keep eyes on two busy bodies, can I?

But, the thought of stopping after Carter makes my heart truly ache.

Not that he isn't incredibly wonderful.  Honestly, I think he is blessed to be soo extra fabulous. He is probably so full of joy that he counts for several children.  And, I am so grateful to have him.  I recognize that there are others who can't even have one.

But I don't like the idea of an only child.  I think there are so many important life lessons that come from siblings--not to mention friendships as well.  The thought of having just one child at our Thanksgiving table just seems so empty.

It's hard to let go of visions and plans for your life.  But, I realize I'm not the only one.  There are those who long to be married.  There are those who are waiting for other things.  Life events don't happen just because you want them to.  And, I suppose there is some refining in the waiting process. 


My in-laws, the Lavins, faced a similar situation.  My father-in-law's family was plagued by Huntington's disease.  So, they decided to adopt.  And not just once, but seven times!  Thank goodness they did, because they adopted my husband and gave him so many wonderful things.  (And he was the last to be adopted.)

I believe in adoption.  I've always planned on probably adopting.  I think it's a wonderful thing.  But, after I had several of my own, and they were grown and out of the house. 

Not now. 

The thought of starting the process makes me ill.  Because it means we're giving up on having our own.  So I haven't started it.  I've just stayed in this uncomfortable and undecided no-man's land.  It hasn't been pleasant.  I feel like if we're supposed to adopt, we need to get on it--but I just can't bring myself to.

Then I feel guilty like, if the child is supposed to have EOE I need to accept it and not let it stop me.  People deal with worse.  And, if it's not EOE it can be something else.  With every single pregnancy there is always a risk of something being wrong.

But walking into the situation knowing the odds are stacked against you just feels completely different.  And, knowing that my decision will affect the child just almost seems outrageous.  I don't want to make that big of a decision for someone else. 

I've been sad and stressed for quite a bit knowing all of this.  I've wanted to write about it--but just couldn't find the words.

I still don't know what the answer is.  Except to breathe.  I just need to breathe and let the answer come to me.  All of this stressing and worrying isn't doing me any good.

Also, we've decided to wait until we can get Carter's health under control.  Once we have our next scope and know how he's responding to the treatment can we really make a wise decision.  Because adding another kid until Carter is doing better, whether naturally or not, isn't a smart move.

It saddens me a bit as the weather turns warmer, knowing that this was when I was supposed to be getting pregnant.  It feels a bit empty, knowing that this time was supposed to be special and it's just another summer.  I get upset when I feel like time is slipping away and there will be even more space between Carter and the next--especially if we do end up adopting since it's such a long process.  It's hard when I hear lots of other people becoming pregnant with kiddo number two.

But, despite the melancholy that I feel, recently I've also felt peace.  I feel peace knowing that what is supposed to happen will.  I'm opening my mind and heart to accept that it might be different from what I had planned but that we can still be a happy and complete family.

And for now, I am trying to really cherish the one-on-one time I have with my very special boy.

Allergy Outreach Success!

As I've written before, I'm very blessed that the good ladies at a local non-profit, UFAN, are willing to let me head up their PR and marketing.

Since I knew Food Allergy Awareness Week (FAAW) was coming I wanted to make sure we received some decent exposure.  I mean, if we can't raise awareness during this set-aside week, when could we?  It was a perfect excuse to approach people.

Of course, Carter got croup, and since it's a volunteer organization (meaning I have no office, or scheduled hours--I'm just trying to do it during Carter's naps) it was a bit difficult to pull some of it together.  It was actually my first year even being aware of this week, let alone to try and come up with a few ideas.

We decided to keep it simple.  I came up with daily activities every member of our group could do on their own.  That way, they could take control and have ownership of the week.  I think this was the best way to raise awareness.  All of our members are in different neighborhoods, communities, and social circles.  If each one would take a step towards promoting it--think of how it would spread.  I love grass roots type of things!

Next, we needed some visuals.  Gulp.  I just purchased for some basic editing software and volunteered.  We're all super busy.  I think I'm the one with the least kids.  And, if somebody's gotta do it--it might as well be yourself...right?  It's not like we have a graphic designer just hiding in our back pockets!  The super nice thing about being a part of a small non-profit is that you can wear multiple hats--even if you're not entirely qualified for the job.  It certainly pushes and expands you.  I love it because it helps you learn new areas and try new things that you might not had if you had a certain person for every single task.  So, I set out designing a flyer for the week.  Here is what I came up with.  Pretty basic, but it was something we could use!  The flyer actually made it's way to other food allergy community pages on Facebook.  I was pretty proud something I doodled from my living room couch was being seen across many demographics--not just Utah.

 

Then, I decided to come up with another, similar pic that every member could post as their profile picture on Facebook to help increase awareness in their social circles.  I hope it sparked some conversations.  It made me smile when I saw others using it. 

 

Each day I've been in charge of blasting the ideas, and reminding the group of how they can participate on UFAN's social media channels.

My biggest accomplishments and excitement came from the feedback I garnished.  That's one of my favorite things about PR is getting to see the immediate results when someone accepts your pitch.  It can be scary asking for things, but it's sooo worth it!

Even when I did PR as part of my full-time profession, I don't think I cared as much as I do now.  I know it's because I'm truly passionate about what I'm promoting.  I know what I'm doing can help either save lives, or improve others' quality of life.  So, I pore over the copy I'm preparing.  I'm asking myself things like, "What would this news station/newspaper want to know?  How can I phrase this, or sell that idea to make them want to cover it?"  I know even little things like email subjects can make or break a producer wanting to consider the idea.  Pressure!

Which is why the victory--when they call back--is even sweeter!  Our local ABC 4 has a morning talk show.  The producer got my email and wanted to have us on their show to talk about food allergies.  I didn't go personally, but had the president and founder of UFAN go, since she is much more well versed in food allergies and education.  I was so proud of that interview!  It made me feel good to know it wouldn't have happened if I hadn't approached them.  You can see it here.

I also reached out to some of my contacts in the food blogging business.  And, I was so touched by the positive responses I received.  All but two responded back saying that they would cover the topic.  (The other two didn't necessarily turn me down, but just didn't respond.) That's asking a lot.  Each of these are professional blogs, who work very hard on their branding to get sponsors.  So, for me to ask them to deviate from their typical topic--especially where it might not apply to their entire audience was asking a lot.  And, I asked kind-of last minute, which can also be a big deal, since I'm sure they plan their posts far out in advance.  There are some great people out there!  I had bloggers from all over: Connecticut, Virginia, Utah, the Midwest, and Oregon.  Bloggers all over the US were uniting to support a great cause.  And, it was because I asked them.  It seriously made me so happy.  Even if just one new person from each blog learned something it was all worth my efforts.

Each of them treated the topic very well.  And, one had me be a guest writer which was fun.  In PR, you're usually the face behind the schemes, so that was nice to put a tag line to my contribution.  I loved each and every one of them.  Be sure to check them out, as they definitely deserve the traffic:

Mel's Kitchen Cafe

Something Swanky

My Own Blog Review

The Joyful Pantry

Clarks Condensed

As Food Allergy Awareness Week wraps up, I'm happy with how it went.  Of course, I would have loved for it to be even bigger, but I'll save those plans for next year.  It went well, and we have a nice foundation to build off of for next year.

There are many reasons to feel like a victim with food allergies.  I could worry about a whole list of things (I won't even mention a few examples, because it seriously gets depressing). But instead,  I am so grateful for the chance to feel in control and be acting instead of being acted upon by being involved.  I'm so glad I found this organization that allows me to donate some time and skills to a fabulous cause.  I may not be making a huge difference, but even striving to can do wonders for the soul.

In closing, I want to make sure that all of you have gone to ashottolive.org and taken the five minute Epi-Pen training.  I'm sure most of my readers have, as I've mentioned it before.  But, I couldn't do FAAW justice without closing on this important and life-saving training.

Happy 1st FAAW to me.  Here's to many more--and hopefully someday the celebrating will be because of a cure.  Or, even that Carter has outgrown one or two.

Very Important Things I've Learned

C and I before church on Mother's Day 2013

 Looking back since last Mother's Day, I've learned some very valuable things like:

• a corner of the blanket needs to be touching Carter's face when he falls asleep
• Carter, or I must be holding his sea horse when he is rocked before bed
• vanilla rice milk is the only thing that can be in Carter's blue sippy cup.  If you try to put anything else in it, the cup will be chucked across the room.
• the bathroom door must be shut at all times, unless we want our toilet paper shredded all over the floor
• do not throw Carter in the air, it is not appreciated
• he loves to be chased
• If Carter is whining, but still laying down in his crib we have a chance he might go back to sleep.  If he's sitting up, or standing then it's game over.
• If you grab the back of Carter's thighs giggles will ensue.

Most would probably say that none of these break throughs that I've learned will earn me a Nobel Peace Prize.  However, I've learned each of these things through hard fought trial and error.  No one else has told me.  This has been experiential knowledge only.  My baby and I have learned to communicate and to understand each others' needs.  I think that's pretty special.

My egotistical side would argue that I still haven't gotten my master's.  Or, that I haven't been promoted--at least by some boss.  That same worldly side would say that the things I've learned don't have much value.  I beg to differ though.

Because the trust I see in my little guys' eyes is all I need to remind me that those things can come later.  When I can tell that he feels safe, loved, and knows that when he needs something all he needs to do is come to me--well, those other things are put into perspective.

I'm so very grateful to be a mother.  I'm grateful for the chance to learn these very important lessons.

Thank you Carter for being mine and for allowing me to be your mother.

Happy Mother's Day everyone!

Chicken and Butternut Squash Quinoa Stew

I know, I know!  It's basically summer and I'm posting a stew recipe.

But, I've been wanting to try this and this week we had a cool, rainy day.  I figured this may be one of my last chances and I jumped on it.

Since I'm terrible at keeping my own secrets  (don't worry--yours are safe)  I had to spill the beans now and couldn't wait until winter to post this.

I was skeptical since it's basically a bowl full of veggies, but it was good!  I went a little heavy on the salt and it was just right.  What I really loved about it, was that you could put the uncooked chicken in the stew.  Usually, I only find recipes that call for pre-cooked and diced chicken.  It was nice to skip this step!

It's such a hearty, healthy, filling dinner.  And, it made enough to have it for lunch the next day.

This is also dairy and wheat free!!!

Chicken and Butternut Squash Quinoa Stew

Taken from Mel's Kitchen Cafe

• 1 tablespoon extra-virgin olive oil
• 1 medium yellow onion, finely chopped
• 1 1/2 teaspoon dried oregano
• 4 cloves garlic, finely minced
• 4 cups low-sodium chicken broth
• 1 1/2 pounds boneless, skinless chicken thighs or chicken breasts
• 1 can (14-oz) petite or regular diced tomatoes
• 3 cups chopped butternut squash (about 1 medium squash, peeled and seeded)
• 2/3 cup uncooked quinoa
• 1/2 teaspoon salt (or more to taste)
• 1/2 teaspoon black pepper
• 1-2 cups chopped fresh spinach (I used frozen)

Directions:

1. In a large 4 quart pot heat the olive oil until hot. Add the chopped onions, oregano, and garlic. Saute for 5-7 minutes, stirring often, until the onion is softened. Add the broth and bring to a boil. Add the chicken and boil until the chicken is cooked, 7-9 minutes. Remove the chicken to a plate.
2. Meanwhile, I peeled the butternut squash and tossed it in the microwave since it is so incredibly tough to cut unless it's cooked at least a little bit.  No need to cook it all of the way since it will finish cooking in the stew.
3. Then, add the tomatoes, butternut squash, and quinoa to the stew. Simmer for 15 minutes until the squash is tender and quinoa is cooked. If desired, scoop out some of the squash, mash it and return it to the pot. Shred the cooked chicken and return to the pot. Add the salt and pepper, adding more salt to taste, if needed. Stir in the spinach. Cook 1-2 minutes until the spinach is wilted. Serve warm.

The Pluses and Minuses of Croup

Arg.  Here we are in 70 degree, spring weather with sickness.  I thought we had made it through the winter, only to get jumped from behind. 

Carter came down with croup Sunday night. Which really stinks, because he was supposed to have his second scope Monday morning and we had to cancel it.  We ended up taking him to the pediatrician in the morning.  I figured it was something because of the unusual cough.  We almost even took him to the ER in the wee Monday morning hours because he was having retractions and having difficulty breathing.  I even slept on his floor for a bit, because I was so worried about monitoring his breathing.

At the doctor she said it sounded like croup, with some in the bronchials as well.  She gave him a steroid shot, a steroid breathing treatment, and even a steroid oral prescription.  

Then, we had to talk her into a suctioning clinic order.  I can tell the doctors always wonder if it's necessary, but I know my son!  And, every time we go in the respiratory therapists make some kind of "Wow, I've seen a lot but your son XXX..." type of comment.  He always impresses them, and not in a good way.  So, it's always needed and I'm glad she conceded.  If you haven't been, it's part of the hospital's cardio-pulmonary section.  They have a high-powered suction that they put up your nose and it pulls everything out from deep, down below.  It terrifies Carter and he thrashes pretty bad--it usually takes like 3 people to hold him, but it cleans him out so well.  He can go from not being able to even eat because he's mouth breathing so bad to sounding so much better.

His runny nose started Saturday, and it's Tuesday night and we still seem to be in the thick of it. 

I have never had croup.  My siblings never had croup.  Claudy has never had croup.  The medical things this child is teaching me!

There have been some definite pluses and minuses of this whole croup ordeal.  Here they are, laid out for you in all of their bulleted glory:

• MINUSES:
• torrential downpour of snot--which gets all over him, me and everything!
• fever
• poor sleeping
• incredibly loud snoring
• retractions/wheezing/scary moments were he can't breath
• having to hold him down while they suction him and he thrashes like we're torturing him
• driving back and forth from the hospital each day for suctioning
• not eating much--which I'm terrified means that he's going to lose the weight he FINALLY gained.  (He went up to the 5th percentile just last week, when he had been at the 1st percentile in January.) All that hard work down the drain!
• crankiness
• being trapped inside and cancelling plans
• having to put his scope off for five weeks (MAJOR BUMMER!  Such a waste of time to continue on our progress with his disease.)
• having to bulb him (It's like a WWF wrestling match to hold him still to try and do it!)
• once you get croup, you're more likely to get it again (add that to his likelihood of getting bronchilitis again too)
• croup season is fall/spring.  Add that to RSV season which is winter.  Basically, it will never be safe!!
• vomiting because he's gagging on the snot.  Again--that's lost calories (so hard for him to make them up) and it irritates his esophagus.

• PLUSES
• Snuggling
• Did I mention snuggling?
• And of course, snuggling

 

Thank goodness snuggling is so darn awesome to help make up for the negatives!

It's no fun having a sick baby, but I adore when he will just lay on me.  We've watched tons of Yo Gabba Gabba and when I couldn't stand it anymore we watched Nacho Libre several times.  It's about the only child show that I can stand and it still keeps his attention.  So, I guess I could add to the pluses list the fact that I've grown my list of "memorized Nacho Libre phrases".  Like, "Chancho, I need to borrow some sweats."  These photos were taken while he laid in my lap and we enjoyed another round of Nacho.  I was loving it so much I had to try and capture it.  In case you couldn't tell, that tuft of hair in the corner is him.  I love my sickly, crazy-haired little boy. 

 

Here's hoping I don't get it! :)

Kindness

 I'm certainly not perfect at always finding the silver lining, or the good in bad situations.  But, I know they're there--even if I'm not willing to do some digging to find them.  I'm trying to get better. One way I find that helps me is by recording the ones that make it past my negativity.  That way, when I'm looking back these memories are prominent and don't fade away. These good memories remind me that not all was bad during these difficult months.  Not every moment is awful, not every day is dreadful.  I don't want to look back on the beginning of his diagnosis and just see a black hole full of misery.  I must do my part to acknowledge the small things.  So here goes...

While I've hated Carter's never ending allergy appointments, I am sure grateful for the kind people who work there.

You've heard I don't love the doctor--but I've grown to appreciate him the more I get to know him.  And thankfully, his staff sure make up for his lack of charisma.  There is a receptionist there that brings toys just for Carter.  She says he's her favorite, and has even played with him so I could make a bathroom run (those five hour appointments are bladder killers!).  

Then, there's the medical assistants.  They try to be as quick as possible when poking him, and are always so friendly to their "little buddy" as they call him.  They never complain or seem upset when he's a bit cranky.  And, we're kind-of a special case, as in, I have to literally bring in groceries bags of food to test him with since they don't have extracts for everything.  I know it's gotta be a pain to prepare every test from scratch, and they never hint it's a bother.  

Since we usually have two appointments a week, I was teasing the staff at how frequent of customers we are.  They jested back, "Yeah, we should just call this room the Carter room,"  since we usually get put in the same room.

Well, imagine my surprise when the very next visit this sign was on the door welcoming us.

It may have only taken them a second to make the sign, but there was a much longer lasting impression.  

I'm so very grateful for good and kind people, who help make not very fun situations much more bearable.  Along every step of the way we've had kind people to help us along and it means a whole heck of a lot!

The Call of the Toilet

I guess he's truly a boy because he likes the toilet!

It's like the toilet is a siren, always tantalizing him and calling his name.  Because, whenever we accidentally leave the door open he makes a beeline.

Of course he leaves bits and bits of shredded toilet paper in his wake so there's no hiding it.

I have tried to tell him "no, no" and the toilet lid even shut on his fingers once and he still persists!  He cried pretty hard, but he must be forgiving because he hasn't slowed down.

As you can see, we have to have the plunger, brush, and garbage up above so he doesn't get into that so I guess at least there's that, right?

We'll keep leaving the door shut, but it gets pretty hard when he screams and screams outside the door when I'm getting ready--or heaven forbid when I want a moment to use the bathroom by myself. :)

Hopefully this will be a stage he'll grow out of...SOON!  Until then, I'll have lots of hand sanitizer handy.