It’s Kind Of Weird That This is GOOD News…

 
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Mr. Happy says “Thank You” for worrying about him.

After the last post, I was inundated with so many messages expressing concern, and offering prayers and advice…I can’t thank you all enough!  Times like these I’m reminded that while we often feel very ‘alone’ in dealing with our sons illness, we really are lifted up in prayer and kept in the minds of many people who love us.  That makes it easier, somehow.

So I thought I would take a moment to do a small post this evening to tell you how much I appreciate your kindness, and also tell you that we’re 95% sure that there is nothing to worry about.

Mr. Happy was already scheduled to have his 4 month well-baby exam today, and at the appointment the doctor examined his rectum (after hearing about the bloody diaper).  She found not one, but TWO anal fissures!  One was actually quite deep.  Poor baby!

So, in light of the fact that he has had no other FPIES/intolerance symptoms, and his other dirty diapers were negative for blood today, we’re going to run with the theory that the fissures caused the blood, and that nothing else is wrong.

Of course we will monitor him and be aware, but now we can do it a little bit more relaxed than we were!

So, it’s a little weird to say, but, Good news!  My babies butt is ripped and bleeding!  (Betcha never thought THAT would be something to be happy about!  FPIES makes you think strange things sometimes…)

So thank you everyone for the prayers and well-wishes.  We can all relax now…I think!

The Sweetest Child on Earth

 
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Yesterday was an icky day.  Mr. Happy was cutting his first tooth, so of course he wanted to be held CONSTANTLY.  Mr. Charm was whiny in the morning.  I gave up on getting anything done besides staying alive.

After their naps, both boys were in better spirits, though Mr. Happy still wanted to be held a lot.  I noticed that he strained quite a bit when he pooped once, but everything looked normal so I didn’t think much of it.

Just before dinner time, I took Mr. Happy in to change another diaper, and this time I saw BLOOD.  Not a lot, but not a little, either.  Even though it was visible blood, I still tested it and yes, it was definitely positive for blood.

(insert stomach dropping here)

I instantly fell into a deep funk and general listlessness.  How could he have blood in his diaper NOW?   6 weeks of nursing, 10 weeks of an elimination diet…why now?

Did he get some rice or chicken contamination?  Mr. Charm loves to share with his brother – did he feed him something when I wasn’t looking?

Could it be the teething?  Maybe that straining to poop thing earlier gave him an anal tear and that is what caused the blood?

Please, God, say it isn’t an FPIES reaction!

While I stumbled around the house in this depressed fog, I managed to re-heat last nights dinner for Mr. Charm to eat, and he was running around the table occasionally taking a bite.

He had knocked over some boxes that were stacked in the dining room (please say that someday all the boxes will be gone from my house!) and all the mail off the breakfast bar.  Mr. Happy wouldn’t let me put him down without screaming bloody murder, so I bent over, holding my 4 month old, picked up the boxes, and turned around to pick up the mail.  Just as I had the mail nicely stacked and ready to put back on the counter, I heard a noise.

I turned around and Mr. Charm had knocked over the boxes I had JUST stacked up!  In the process of chastising him, I managed to not put the mail all the way on the counter and it slipped off the edge…right back on the floor.

Suddenly I lost it.  I laid Mr. Happy down on the floor and yelled at Mr. Charm.  ”Why does everything have to be knocked over?  Why can NOTHING ever stay on the counters?”

Suddenly I realized, I wasn’t really mad at him.  I was mad at life.  Food.  FPIES.  FructMal.  I was mad at doing the best I could, doing BETTER than my best, and it still not being enough to keep my children healthy.  I was just MAD.

So I turned away from Mr. Charm and screamed at the Heavens “WHY?  WHY?  WHY???” and laid my head on top of the breakfast bar, slamming my hands onto the counter.  And I began to cry.

Before a tear could even fall, I felt a little hand gently touch my arm.

I turned, and there was Mr. Charm, looking at me with concern on his face.

“Ow?” he asked.

I picked him up and hugged him tight.  Then I looked him right in the eyes and said, “Yes, sweetie.  Mommy owies on the inside.”

He immediately leaned forward and gave me three kisses on my face.

It didn’t fix me; I’m still mad and devastated and scared.  But it took the brunt of the edge off my agony.

I have the sweetest child on earth.  The sweetest CHILDREN on earth.  How could that not soften your heart and lessen your pain?

(And for the record, I’m usually much more calm and composed around my children.  As I said, it was an icky day and the blood totally knocked me down. I debated about sharing this story, as it’s not one of my finer moments.  But this is one of those ‘real’ moments parents have, and I’m extending grace to myself and hoping you’ll do the same.)

I still don’t know what caused the blood; if this is the start of a problem or a random occurrence will only be proven with time.  Whatever it is, though, I’ll get up, put on my big girl panties, and deal with it.  My sweet boys are worth better than my best.

Be Prepared: First Aid Kit

 
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photo courtesy of m_bartosh at http://freedigitalphoto.net

Based on the evidence so far, I’d venture a wager that I will see LOTS of bumps, scrapes, sprains, bruises, and other assorted boo-boo’s over the coming years.  Mr. Charm’s other nickname is “Captain Destruction: The Kamikaze Kid”, after all!

I’d also be willing to bet that he’s not alone in that.

So, for Mama’s in general, it’s important to have a good first aid kit around.  

Where you live might make a difference in how comprehensive you make your first aid kit; if you’re miles from help, you’ll want a more extensive array of tools on hand than if an ambulance can get to your house in under 5 minutes.  So, decide for yourself, and start assembling!

*(disclaimer)   Now, I’m not a doctor or first aid specialist, but I’m a Mama and a Flight Attendant, and I’m using my knowledge from those experiences to come up with my advice here.  Please evaluate for yourself what you should put in your first aid kit, and what you should have on hand in an emergency.  I only intend to give you a good starting point and a nudge to actually do it (if you haven’t already)!

Good things for Mama’s to put in a first aid kit:

  • alcohol
  • peroxide
  • neosporin
  • assorted band-aids
  • sterile gauze (such as 4 inch squares)
  • medical adhesive tape
  • tweezers
  • ACE-style bandages
  • bandage scissors
  • Calamine Lotion
  • Triangular bandages
  • Rolls of gauze bandage
  • latex gloves (or non-latex, if allergic)
  • ice bag
  • pain relief spray
  • activated charcoal
  • ibuprofen
  • thermometer
  • inspect repellant
  • moleskin (for blisters)
  • aloe vera
  • splint
  • maxi-pads (they’re great for absorbing large amounts of blood)

For the FAM, you’ll want to also include:

  • electrolyte drink
  • benadryl
  • need I say it? Epi-pens!

Depending on how severe your child’s allergies are, you may need to get certain medications, like benadryl (dipenhydramine) and ibuprofen compounded to be safe.  These have a shorter life span, so be sure to update your kit regularly!

This series is on how to be prepared for winter, so additional items you’ll want to make sure to have handy are:

  • emergency blanket (those thin silver ones)
  • flashlight
  • instant heat packs
  • hot water bottle
  • regular blankets

Most importantly, though, is to educate yourself on first aid and know what to do.  Look into buying a small first aid manual that you can keep handy, and for winter, know the signs of hypothermia.

Hypothermia can set in even if indoors, and often is so slow and gradual the victim is unaware that they are in danger.  Look for bright red skin (in infants and children), slurred speech, slow breathing, loss of coordination, fatigue, confusion, and shivering.  If you see these signs, act immediately!

Begin warming the torso, take off any wet clothes, wrap them in blankets, monitor pulse, administer warm beverages if possible.  Do not warm the extremities first, as this can bring on shock.

If you’re stuck at home in a winter storm, it might also be useful to have the following items in your home:

  • emergency radio (hand crank or have extra batteries)
  • fire extinguisher (chemical, or A-B-C style)
  • rock salt/sand/kitty litter
  • snow shovel

There wasn’t as much as I thought there would be in assembling a first aid kit that is specific to FAM’s, other than always ensuring you have the correct, safe medications on hand.  But, I still felt it important to include this post in the series because it is so important to be able to take care of what you can in an emergency.

I’d strongly encourage anyone to take a basic first aid course, a CPR course, and to have the tools and confidence to use them.

In bad weather, when emergency services are already taxed to the extreme, it becomes even more important that you can be somewhat self-sufficient.  No one wants to drive through a blizzard and sit in the ER for HOURS when it was something you could have fixed yourself.

Stay tuned for the final part of “Be Prepared for Winter (With Food Allergies): The Car Kit”!
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See the rest of the series:
Part I – Be Prepared: Power Outage
Part II – Be Prepared: Food Provisions
Part III – Be Prepared: Food Preparation
Part V – Be Prepared: The Car Kit 

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Do you have anything you would suggest for a Mama’s first aid kit?

This post has been shared with Allergy Free Wednesdays and Frugal Days, Sustainable Ways.

Be Prepared: Food Preparation

 
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photo courtesy of kratuanoiy at http://freedigitalphoto.net

So you’ve lost power, but have plenty of food on hand.  Now what?

If you’re leaving your house, you should already have a handy-dandy list of what to pack in the event you need to leave (see Part I), so pack up your food, utensils, formula, bottles, and all the other life necessities and hit the road.

If you’re staying put, you need to figure out how to cook all that food!

photo courtesy of graur codrin at http://freedigitalphoto.net

At this point, you may not need to read any more of this post.  If you have a gas kitchen, consider yourself lucky! (And…I hate you.  Sorta.  OK, not really.  But I AM jealous!)  With a gas kitchen, even in a power outage you can cook and bake with style and ease…even if you ARE wearing a parka while you do it!

For the rest of us unfortunate souls who live with all-electric kitchens, well, it’s time to get creative!

If you have a food allergic kiddo and an all-electric kitchen, I’d strongly urge you to look into buying a generator.  We didn’t have one for the first power outage we lived through, and trying to cook outside in ice and snow on a BBQ grill is pure misery!

photo courtesy of graur razvan ionut at http://freedigitalphoto.net

However, it is a viable option.  If you don’t have the funds for a generator, and don’t currently have a BBQ grill, you might look into getting one.  I’ve seen them at big box stores for as low as $35 before, and if you have no other method of cooking food, it will work.  (And just so you know, BBQ-ing ALWAYS is considered ‘the man’s’ job.  <wink>)

There are some excellent alternative options for cooking out there that I haven’t had a chance to try but am looking forward to attempting: solar ovens and portable butane cook stoves.  

Solar ovens are brilliant!  You can bake a full lasagna in the middle of a snow bank in just a few hours!  I don’t have one – yet – but it is totally on my ‘wishlist’ of things to get.

photo courtesy of John Kasawa at http://freedigitalphotos.net

The butane cook stove, aka Korean cookstove, is very simple: it looks just like a single gas burner that runs on a can of butane (kinda like a camp stove, but safer to use indoors).  It’s fairly compact and storable, and with just a few cans of butane you can easily cook up food for your family without electricity.

Of course, you could always go REALLY old school and cook in an actual fire…

photo courtesy of Danilo Rizzuti at http://freedigitalphoto.net

Or over a fire (think cauldron!)…

photo courtesy of Simon Howden at http://freedigitalphoto.net

But those may not be the best choices with kids around!

Of course, whichever method you choose for emergency backup during a winter power outage – MAKE SURE YOU BUY THE FUEL FOR IT BEFORE THE STORM COMES!  (Ask me how I know this!)

photo courtesy of vudhikrai at http://freedigitalphoto.net

If you get a generator, buy at least 2 large gas cans and fill them at the start of winter.  You can buy preservatives to help the fuel stay viable for longer, but honestly, you can just rotate the fuel out every so often and you’ll be fine.  (Also, if you buy a generator?  Pick up a $20 electric skillet at a big box store.  They’ll use less power than your stove and you can cook almost anything on them.)

If you go with the BBQ, buy up some extra charcoal, lighter fluid and matches.  Solar oven?  Well, you actually don’t need anything but a sunny day!  Korean cookstove?  Buy a few cans of butane to have on hand.  (Check to see how long each can is supposed to last, and decide how much fuel you think you’ll need.)

The reason I’m going into such detail about methods of cooking is that for many food allergic kiddos, slapping together a sandwich just isn’t going to cut it.  MOST of what my kids eat has to be cooked or made from scratch, and I’m guessing the same is true for most other FAM’s out there.

All of this is moot if you don’t have any foods to cook on your BBQ/cook stove/electric skillet.  So, as I detailed in Part II, stock up at least 2-3 weeks worth of extra food, just in case.  But if there are any foods or meals that you can provide for your food allergic kiddo that do NOT require cooking, focus on stocking up on those ingredients first!

If your child has any medications that require refrigeration, be sure to check the acceptable temperature range on those.  This is another moment when having a generator could come in handy.

Stay tuned for Part IV of Preparing for Winter (With Food Allergies): First Aid Kit!
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See the whole series:
Part I – Be Prepared: Power Outage
Part II – Be Prepared: Food Provisions
Part IV – Be Prepared: The First Aid Kit
Part V – Be Prepared: The Car Kit

___________

Do you have any suggestions for cooking when your kitchen is in-op?

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This post has been shared with Allergy Free Wednesdays and Frugal Days, Sustainable Ways.

I Will Not Hate Doctors, I Will Not Hate Doctors…

 
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photo courtesy of Stuart Miles at http://freedigitalphotos.net

(I’m going to apologize in advance…this post is rather long and disjointed, but for all my editing efforts I can’t seem to improve it.  I’m still exhausted from Monday and seriously irritated and confused, and this is the best I can do.  Thanks for sticking with me!)

Riddle me this: what do you get when you put 1 toddler, 1 baby and 1 Mama in 1 car for 9 hours in 1 day?

Two really ticked off kids and one very tired Mama.

How about this one: what do you get when you combine the previous riddle with a 3 hour appointment with the GI?

One starving, exhausted toddler and one Mama SO IRRITATED SHE’S ABOUT TO SPIT NAILS!

OK, so, backing up a bit…

Monday was Mr. Charm’s scheduled appointment with the GI at the Children’s Hospital about 3 1/2 hours away (the one I jumped through hoops to get), where we were hoping that Mr. Charm would be given the hydrogen breath test to answer the question of whether he has fructose malabsorption.

I had researched, and to be prepared for that test you must eat very bland foods (white potato, white rice, white bread, chicken, turkey, water and salt) the day before the test and then you must fast completely for 12 hours before the test.

So Sunday I cooked up some plain chicken breasts and a cup or so of rice (that I had to ‘borrow’ from my mother-in-law, since I have an FPIES-friendly kitchen) and fed Mr. Charm that all day.  Then planned to give him nothing at all until after his doctor appointment. (Do you know how awful it is to listen to your toddler moan “EAT!” constantly for hours and be unable to explain why he can’t yet?  Ugh.)

I also considered that the doctor may want Mr. Charm to have the test, but they would be unable to test him on Monday and so we may have to stay the night at a hotel and be ready to test the next day.

Consequently, I packed an ice chest FULL of pre-cooked meals for both myself and Mr. Charm, along with plastic pitchers of decaf tea to drink and a bag full of ‘safe’ snacks.

Plus a suitcase with a few changes of clothes for both kiddos and one change for me, our toiletries, a few toys, and tons of diapers.

For crying out loud, my car looked like we were leaving home permanently!

Hey, as you know from my series, I like to ‘be prepared’!

So at 3:00 a.m. I was up and showering, nursing Mr. Happy, loading the ice chest, the car, getting the car warmed up, and finally dragging both kiddos to their carseats in their pajamas.

At an ungodly early hour of the morning, we were on the road.  If I needed evidence that I have a guardian angel, I got it that morning…2 hours of sleep, driving on winding, steep mountain roads in pea-soup fog, well, I’m glad I have good brakes, is all I’m going to say!

So we got to our appointment on time (I stopped and changed the kids into real clothes before we got there) and were ushered back for all the ‘weighing, history, why are you here’ stuff.  Then we were shown to an exam room.

A few minutes later a doctor came in.  Not OUR doctor, just A doctor.  She was very nice and asked me to explain what we were there for.

So I told her the whole, long story.

She said “OK”, and that she would go get our doctor now.

A few minutes later, Dr. G came in to see us.  I got to tell him the whole story, too!  Yay!  I love repeating myself!!

Here’s where the frustration started to kick in.  He agreed that there did seem to be some sort of malabsorption issue with Mr. Charm.  He even thinks it is possible that it IS fructose malabsorption.

But he’s not going to test for that just yet.

This isn’t me, but I felt like this!
photo courtesy of David Castillo Dominici at http://freedigitalphotos.net

No, he wants to rule out other things first, because, you see, it’s “difficult to administer the hydrogen breath test to little one’s”.

So he took blood to check for Celiac Disease, ordered a sweat chloride test to rule out cystic fibrosis (though I told him that I’m not a carrier and therefore my children cannot have cystic fibrosis – his response? Sometimes kids can have a rare genetic mutation that causes spontaneous cystic fibrosis!), and gave me tubes to collect stool in so we can test for parasites.

Because the odds that my child, who is presenting with many symptoms of fructose malabsorption and NONE of the symptoms of cystic fibrosis has a RARE GENETIC MUTATION instead of a disorder that affects 30% of the population IS SO MUCH GREATER, DONCHA KNOW?!

And you just KNOW that a sudden drop in weight gain that stayed constant for almost two years is brought on by parasites.  Especially since we haven’t been out of the country, my child has no friends to play with, and does not attend daycare.  (Yes, I know it’s still possible, but just not as likely.)

OK, so I actually agree with testing for Celiac, although we’ve been gluten-free for 9 weeks and he has actually gotten WORSE, so shouldn’t he be improving – or at least staying stable – if it is Celiac?

Yes, I said Mr. Charm is getting worse.  His behavior is still the same, and his diapers are still full of undigested food and very loose stool, but that’s been constant.  However, he has LOST almost 3 pounds in the nine weeks we’ve been on this diet.

One might have concerns that he’s just not eating enough food (you know, that I’m “starving that boy to death”) except that I’ve tallied up his caloric intake for a few weeks now and the child is eating between 1100-1500 calories a day!  Toddlers his age (depending on the source) need between 1000-1300 calories a day.  He’s eating enough food – he’s just not getting the nutrition from it that he should.  Something is wrong.

After reading more about foods to eat and foods to avoid if you have fructose malabsorption, I’ve discovered – much to my chagrin – that I’ve been basically feeding Mr. Charm a full-on fructose feast for the last 9 weeks…onion, garlic, tomatos, bell pepper, dates, bananas, watermelon, cantaloupe, honeydew, honey, orange and coconut are ALL on the list of “foods to avoid”!

Add in some beef, carrots and potatos, and that’s basically all he eats these days!

Furthermore, after eating the bland diet all day on Sunday, and eating nothing on Monday morning, I quickly provided him with lunch as soon as the appointment was over.  He ate some more chicken and rice, but I also filled his sippy cup with straight OJ (instead of cutting it with water like I usually do) and let him snack on however much dried cantaloupe he wanted.

About an hour after lunch, he started screaming, crying, whining, acting out, his stomach was rock hard, and he soon had one of the most disgusting, smelly diapers I’ve ever had the displeasure of changing.

Tell me this child doesn’t have fructose malabsorption.  Come on!!

So we’ll await the results of the sweat chlorine test, the parasite stool tests, and the Celiac blood work, and when that all comes back negative (which I’m pretty sure it will) the doctor will surely have another game plan.

He suggested that if this is all negative we may consider doing a biopsy on Mr. Charm to check for all the different malabsorption conditions at once, which really sounds awful…but logical.  Rather than enduring who knows how many more tests, we could be done all at once.

But, still.  A biopsy?  Ugh.

WHY the doctor would not perform the breath test when he KNEW that’s what I wanted and KNEW Mr. Charm was prepped and ready for it…I mean, no, I am not a doctor, but he AGREED with me to a certain extent – what harm would it do to go on and do the test then?  Worst case scenario, it would satisfy my concerns and shut me up so we could continue to dig to find out what is actually wrong.  Best case scenario, I’m right and it answers the question right then and there.

Is it that important for a doctor to prove a Mama wrong?  Is it so horrible for a doctor to listen to the gut instinct of a Mama?

Oh, and I just loved  this part: next he spent some time telling me that I should make sure not to get “paranoid” about everything the kids eat, that he knows (because he has food allergies) how easy it is to go “overboard” about food, etc.

While he said that in a kind-hearted way, and I understand that he was attempting to comfort me and make me relax a bit, I had – and still have – a strong urge to slap the snot out of him for that!

Excuse me?  I just had the displeasure of watching my youngest son fall critically ill, spend almost a week in the hospital, only to be mis-diagnosed upon release, given a new diagnosis a week later, and then forked out over FOUR THOUSAND DOLLARS for the privilege!  I also have gotten to watch my oldest son stagnate in growth, have diarrhea for two straight years of life, and have also forked out many thousands of dollars for his medical care.

Paranoid?  HELL, YES.  Overboard?  NOT ON YOUR LIFE.

Back off, Bucko – you’re poking Mama Bear with a stick and she does NOT LIKE IT.

Oh!  And FPIES Mama’s will LOVE this one: Mr. Charm was getting antsy after spending so much time in the exam room, so the nurse brought him a pack of crayons and a coloring book.  So sweet, right?  And they let him keep them!  I was touched, actually.

On Tuesday, Mr. Charm gave Mr. Happy one of his new crayons (he loves to share with his brother) when I wasn’t looking, and when I finally noticed, Mr. Happy had been TEETHING ON THE CRAYON!  So I called the manufacturer, and yes, those crayons DO have a soy-based ingredient in them.

So the doctor who diagnosed food allergies (non-specific) and FPIES specifically in my child hands out POISON CRAYONS to his patients.

And he wants me to be less paranoid. (cue the head-slap and INCREASE in paranoia)

Now we wait to see if Mr. Happy ingested enough crayon to have a reaction, if, in fact, soy is one of his trigger foods.  There goes my happy baseline!

So, I could wait to see what the test results say, and then wait for a biopsy (or the breath test I originally asked for) and for those results, or I could do what any Mama who cares about her child would do when faced with such ridiculousness: implement a fructose-free diet for Mr. Charm and see what happens.

I’m in the process, now, of figuring out what he can safely eat, and let me tell you, it’s almost as confusing as FPIES!  I’ve found four lists, so far, that outline ‘safe’, ‘eat in moderation/try’, and ‘avoid at all cost’ foods based on fructose content, and they are not the same!  

One will say bananas are ‘safe’, another says ‘moderation/try’.  One will say beans are okay, others will point out that they may be too gas-forming to eat.

So, I’m compiling the lists, and plan to start with only the foods that show up as safe on all four lists.

Fortunately, this won’t be as tenuous a process as Mr. Happy’s FPIES trials.  Fructose malabsorption seems to show up – and disappear – rather quickly, so hopefully 2-3 weeks of being on this restrictive diet for Mr. Charm and we can start trialing foods at a rapid pace.

If his reaction after lunch on Monday was any indication, there’s no way to miss when he is reacting to fructose!

So my next biggest fear has come to pass:  I will now have to start preparing TWO meals at every mealtime.  One FPIES safe meal for me, and one FructMal (fructose malabsorption) meal for Mr. Charm.  The Geek can decide which meal he wants to eat that night!

(And have any of you Mama’s noticed that whenever you have something you dread about your kiddo’s medical issues, THAT is the very next thing you have to deal with?  I need to stop dreading/fearing things…it seems to make them come to pass!)

I still admit that I may be wrong; Mr. Charm may NOT actually have fructose malabsorption.  But I can’t stomach the thought of suspecting this as strongly as I do, and doing nothing to help him while watching him lose weight at an astonishing pace.

If I’m wrong, well, I’m wrong.   We move on.

But if I’m right?  I’ll have started helping him get healthy MONTHS faster than the GI would have made possible.

Bring it on, baby.  Mama’s got some cooking to do!

(And I feel like I should write lines…”I will not hate doctors, I will not hate doctors” until I get over this feeling of “Isn’t there anyone with an MD that will actually HELP US??  Nah.  I don’t have time for that!)

Anyone else dealing with fructose malabsorption (or any other malabsorption) that can help?  Pretty please?  With a (safe) sugar on top?

 

Be Prepared: Food Provisions

 
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photo courtesy of Victor Habbick at http://freedigitalphoto.net

So you’ve lost power.  You’ve decided whether you’re jumping ship or staying put.  Either way, you have to feed your food allergic kiddo!

Each of us has our own food specifics that we deal with, so I can’t make blanket recommendations like “stock up on canned soup” or “always keep sandwich fixings around”.  You know best what your family can eat, so take my advice and tweak it to suit your needs.

To start with, I recommend meal planning.

Say what?

Yes.  If you start meal planning now, aside from all the economic and sanity saving benefits you’ll reap at the present, you’ll also have a very good idea of what your family consumes, in what quantities, for how long.  That will be invaluable information for deciding how much “extra” you should have in your pantry.

I meal plan.  Our FPIES diagnosis this summer has seriously thrown me off my game, but I’m getting back in the swing of things.  I hope to share with you how I do it later on (once I’m better at it again) but for now, just start with a week at a time.  Jot down what you’ll eat at each  meal for a week.  After the meal, make any notes you need to remember.  Like ‘can use half as much meat if I add more quinoa’ or ‘was not a huge hit – had a ton of leftovers’.  This will help you make better meal plans as you go along.

photo courtesy of Ambro at http://freedigitalphoto.net

Once you know what you will need to sustain your food allergy kiddo for 2-3 weeks (I’m picking that time frame in the hopes that anything any of us go through only lasts that long – feel free to extend this if you like!) start buying a little extra every time you shop.

If you’re in my boat and only able to use certain items that you can only get through Amazon, just buy one extra box every time you make a purchase.  If you can get things through your local health food store, pick up an extra pound of millet/amaranth/alternative flour every time you buy.

The trick to that is to continue buying on your normal schedule!  In short order, you’ll have enough extra that you won’t have to worry that your shipment or grocery shopping trip has to be delayed because the roads are too dangerous.

If there are any foods your kiddo can eat that do NOT require preparation or cooking, emphasize those to start with.  For one, it will make it easier to ensure your kiddo can keep eating regardless of the circumstances you are in, and for another reason, those foods tend to be ‘snack’ foods – and that means comfort food!  In a power outage and heavy winter storm, stress might be a factor in your house. Comfort foods will help make things feel more normal to your kids.

If you’re able to, try to pre-make several meals worth of food for your allergic kiddo that can be dehydrated, frozen, or canned so that the first few days of acclimation in your new digs or in a frozen house will be a little less stressful.  It’s far easier to dump a can of ‘safe’ food into a pan and heat it up than to clean, prep, and cook from scratch an entire meal while exhausted from packing, evacuating, driving and being in a new place, or trying to keep the family warm when the power goes out!

For those FAM (Food Allergy Mama)’s that have kiddos still on formula or breastmilk, don’t forget about that, either!  If you can, try to buy an extra can of formula a couple times a month so you’ll have a decent stockpile of it in case.  When emergencies hit, staples tend to fly off the shelves; it would be terrible to have to drive all over town in inclement weather trying to find sustenance for your baby!

Keep in mind what fuel/cooking options you will have when deciding what meals to plan for your food allergic kiddo in a power outage.  Some things will take quite a bit of cooking time; those are not well-suited to this scenario!  Think of the foods you make your kiddo that cook up quickly and easily, and require little clean-up.  Those are your go-to foods for an emergency stockpile.

photo courtesy of winnond at http://freedigitalphoto.net

So far I’ve only discussed losing power, as that is the most common problem to face in a winter storm.  But keep in mind that you could lose water, too.  So try to buy a few extra cases of water when you can, just in case.  The general rule of thumb is to have AT LEAST 1 gallon of water per person, per day.  So plan accordingly.

I mentioned it in Part I, but please don’t forget your diapering needs.  Grab an extra pack or two when you have coupons or find a good deal on Amazon.  Don’t give up on the idea of cloth diapering, if that is what you currently do.  I posted a link to a fantastic plunger that can at least keep you in diapers through a crisis in Part I.  Of course, if you’re planning to keep cloth diapering, you’ll want to store extra water for washing diapers.

Next I’ll discuss Food Preparation.  Stay tuned for Part III!
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See the whole series:
Part I – Be Prepared: Power Outage
Part III – Be Prepared: Food Preparation
Part IV – Be Prepared: The First Aid Kit
Part V – Be Prepared: The Car Kit

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Do you have any tips on how to provision the specific foods your food allergic kiddo needs in case of an emergency?

This post has been shared with Allergy-Free Wednesdays, and Real Food Wednesdays.

Tears for Pizza

 
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It’s such a normal sight: the family gathered around the table sharing a big ‘ol pizza.  Pizza is a fabulous finger food for a toddler, just like grilled cheese sandwiches, cheese sticks, chicken fingers and string cheese.

I’ve never once seen my son eat any of those.  (Except homemade chicken fingers I made for him with homemade bread crumb coating.  Oh, and he nibbled at a grilled cheese sandwich when we once did a dairy trial that he didn’t tolerate.)

Such basic, universal childhood experiences are verboten for a dairy and egg allergic child; I mourn their loss for Mr. Charm.

So is it surprising that I actually teared up when witnessing this scene?

His first ever pizza!

I found a recipe for quinoa pizza dough, winged it on making a pizza sauce, and topped his pizza with ground beef, red bell peppers and spinach.  No cheese, but still…he finally got to experience pizza!

And he really liked it!  He ate about half of a 9 inch pizza all by himself.

I cannot possibly express how thrilled I am about this discovery!  (Don’t worry – recipe to follow!)

He REALLY liked it!

Have any of you experienced tearful joy witnessing your children eating ‘normal’ childhood foods?

Be Prepared: Power Outage

 
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photo courtesy of Michal Marcol at http://freedigitalphotos.net

This is the kick-off of my series Be Prepared for Winter (With Food Allergies), which will run this week.  It never hurts to be prepared in general, but with special needs involved, some planning is prudent.

There are all sorts of blogs, books and articles out there on preparedness; you can decide for yourself how prepared you would like to be in your life  – I’m only talking here about preparing to get through a blizzard!  

You may not think your circumstances warrant preparation.  Perhaps you live on a beach in Florida, or downtown in a major city.  I’ve lived and visited a lot of places in my life, and I can verify that every location has its own pitfalls.  Hurricanes, tornados, earthquakes, mudslides, blizzards…we all get to deal with something!

But because I live in a place with a hearty winter, where I’ve already survived two “snowed in” scenarios – one with  no electricity – I am focusing on preparing for winter conditions.  Those of you who have short, mild winters might take what you can from this and use it for the conditions you live with.

Also, I will be primarily focusing on the specific things a Food Allergy Mama needs to consider.  There are tons of brilliant articles and blogs on general preparation; my aim is to highlight the issues that may arise due to specific food needs.  Please do not take my advice as the be-all, end-all of your winter preparation plans!  

So here we go!  Part I: Power Outage.

The first step in preparing for a power outage in winter conditions is to determine what your general plan will be: will you be able to leave your home and go somewhere with electricity (hotel, family, friends) or will you be forced – due to road conditions – to stay at home?

If you can leave safely, that will almost certainly be the best action to take…but then you’ll have the consideration of packing.  As a food allergy Mama, you know that finding the proper ingredients to feed your kiddos can be a challenge!  So make sure to pack your car as full as you can to survive 2-3 weeks worth of cooking in someone else’s kitchen.  (Of course, that means you’ll need to have 2-3 weeks worth of ingredients already on hand in your kitchen!  See Part II of this series for more details!)

If your child is highly allergic sensitive, you may consider also packing any cooking utensils you may need to avoid cross-contamination issues.  Think through what your needs are in this respect, and jot down a “abandon the house packing list” for your kitchen needs to have on hand in case you’re suddenly faced with hitting the road.

For those FAM’s (Food Allergy Mama’s) that have children still on formula, don’t forget to pack the formula and extra bottles and nipples.

Nursing FAM’s often stockpile milk in their freezer.  If you’re leaving your home, you have to decide if your milk will stay frozen in the freezer or if you want to bring it with you.  Check the stats on your personal freezer; most companies will tell you how long to expect it to retain temperature in power outage situations.  Then you have to decide whether it is worth the risk or not.  (Personally, I’m taking it with me.  Liquid gold, baby!)

If you’re going to a family or friends house, they’ll probably be more than happy to toss your milk into their freezer for your stay.  If you’re going to a hotel, you’ll need to call ahead and make sure they have a freezer/refrigerator for you to use.

Don’t forget to pack any ER forms, medical records or treatment plans for your kiddos, such as what most FPIES Mama’s have around!  The last thing you need is to be out of your home for the duration and have to endure an ER visit over a reaction without the documentation needed to make the hospital stay bearable!

photo courtesy of adamr at http://freedigitalphotos.net

If the roads are too dangerous and you must stay at home, you have a whole new set of issues to deal with.  The primary considerations in a power outage in winter weather are heat, food, and lighting.

So make a plan for how to keep warm and how to light your house in the evenings (and sometimes in the grey, overcast daytime).  For the FAM, though, you need to think ahead to how you will 1.) feed your food allergic kiddo and 2.) save any milk or medicines you have stored in the fridge and freezer.  

I’ll be going into greater detail about food preparation in Part III of this series, but for now I’ll simply plant the idea of thinking through how you could keep your medicines and pumped milk safely within temperature range in the event you lost power.

It might sound like a silly thing to mention when talking about losing power in a winter storm, but I have lived through two winter storms that knocked everything in our area out, and then promptly had lovely weather in the ’50’s for days following the storm!  That is certainly not cold enough to keep your medicines and milk safe, so you’ll want to have a plan for how to do so.

In my case, our upright freezer is on the porch.  Odds are that if I didn’t open it at all, it would stay pretty close to freezing temperatures inside during a power outage in winter.

We also invested in a small generator a few years back.  It isn’t large enough to run much of the house, but it will allow us to plug in a few things for a few hours per day so we can avoid losing all the food in our fridge and freezer, run a couple of space heaters on occasion, and cook some food on an electric skillet.

One more thing FAM’s need to consider, whether leaving or staying put, is diapering.  Many food allergic kiddos have sensitive heinies and consequently, many FAM’s cloth diaper their babies.

It’s a little hard to wash and dry your cloth diapers if your electricity is out!  Not impossible, just hard.  So if you’re leaving your house, you may consider making sure you have enough disposables to get through an extended stay outside of your home, or making sure you bring enough cloth diapers and the special soaps they require to stand up to a hotel washer/dryer.

If you stay at home, you’ll either need to plan on having disposables to get you through the power outage, or investing in a manual washer and a line dryer.  This is an excellent plunger washer; you simply put your clothes and soap into a large bucket and agitate repeatedly with the plunger.  Rinse and hang to dry!

Just don’t leave yourself – and your babies bottom – hanging out to dry!

Though I’m trying to primarily cover food allergic specific issues here, I’d be remiss if I didn’t remind you that no electricity means NO TV/Computer Games/Electronic playthings!  So dust off your board games, decks of cards, stock up on batteries and make sure you have plenty of crayons and paper…bored kiddos are a stress you don’t want to have when huddling around a space heater and cooking in the snow!

Again, please think about all your other needs in the event of a power outage; this is by no means a comprehensive list!

Stay tuned for Part II of Being Prepared for Winter with Food Allergies: Food Provisions.

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See the whole series:
Part II – Be Prepared: Food Provisions
Part III – Be Prepared: Food Preparation
Part IV – Be Prepared: The First Aid Kit
Part V – Be Prepared: The Car Kit 

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Do you have any suggestions you might add for a FAM to consider in the event of a power outage?  Please share!!

This post has been shared with Allergy-Free Wednesdays, and Real Food Wednesdays.

Mr. Happy’s First Month on My Elimination Diet

 
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Hiya!

It’s been a whole month of nursing Mr. Happy on my elimination diet.  I’m torn between cautiously acknowledging success, and jumping up and down with ecstatic joy at the success.  (Sometimes pessimism creeps in and keeps me from getting my hopes up too high!)

Seriously, though, he seems to be doing great!  

The problem with trying to run trials like this, I’ve found, is that my house and my baby are not a scientific laboratory.  There is no ‘control’ to measure progress against, and there are many other things that happen in the growth and life of a baby that can confuse the data.

Things like teething.  And weather changes.  And heinie sensitivity to disposable diapers.

All of which can create symptoms that can mimic his build symptoms, but which are, in effect, harmless.

So, I have certainly been eagle-eyeing every little thing that happens to and by Mr. Charm, but frankly, so far everything that has been slightly ‘off’ has seemed to have a harmless explanation.

So, I think we were blessed to have randomly picked twelve things for me to eat that are safe for Mr. Happy!

Hooray!  Woot!  (Go ahead; do a little dance for me.  I’m still a little scared to!)

In fact, though we haven’t been to the doctor for an official weigh-in, I did the “weigh myself holding Mr. Happy and then weigh myself without him” scale check and it appears that he has gained a whopping 3 pounds this month!

Yowza!  Guess breast  milk does a baby good!

So, with a month of successful nursing under our belts, a happy baby FINALLY doing well and healing, where to next?

There are a few options:

– I can just keep on keepin’ on, and not change a thing.  This way I can continue to pump and save milk for emergencies/when I return to work, and know it is safe.  A stockpile would be VERY good right now!

– We can call the doctor to schedule an appointment for Mr. Happy’s vaccinations.  I would be comforted to know he was inoculated, however, there are problems with this.  I would need to look into the inactive ingredients in the shots he’s about to get to make sure they’re safe, and I’ll want to check with my genius Mama’s on the message boards to find out if they know of any dangers associated with the shots for FPIES kids.  Still, it’s an option.

– We can start Mr. Happy on a probiotic.  There’s been some research indicating that a healthy gut flora helps heal FPIES kiddos and encourages more frequent ‘pass’ foods, and I’m sure that with the antibiotics I was on at his birth and the MANY antibiotics he received in his hospital stay his gut flora could use a little boosting.  Again, research into the ingredients would be vital, and asking what strains were most successful on the boards wouldn’t be a bad idea, either.  (Yes, I know I said I started him on a probiotic a while ago, but decided not to because I wanted him to have time to heal before messing with his body any more.)

– I can go hog-wild crazy and add ONE WHOLE NEW FOOD ITEM to my elimination diet. I’m thinking quinoa; it would open up a lot of options for me to eat!

Honestly, I don’t know which is the best choice for Mr. Happy right now, so the Geek and I will continue to discuss our next step.

I know we need to take a step forward in some way or other, but I’m a little scared to rock this boat…this steady, safe, healthy, non-reactive boat.  It’s nice and comfy here, and taking a step puts us straight into the path of ‘unknown possibilities’, which could be very good…or very bad.

Very bad is very bad.

So, I’ll just sit back for now, pleased and satisfied that all is well with my sweet, happy boy.

For however long it takes us to decide our next move.
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I just have to ask: What would YOU do in my shoes?

She Said, He Said

 
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photo courtesy of sscreations at http://freedigitalphotos.net

It’s an irrefutable fact: men are different from women.

We think differently, act differently, and just plain function differently.

Here is a prime example, straight from my marriage.

OK, so, I’ve been losing a ton of weight.  (Down 38 pounds as of now!)  I feel great.  I look great.  I’m rediscovering my cheekbones, and that clothes can be fun again.

As might be expected, the Geek is LOVING this, too!

Here’s where the difference in men and women starts to come in…a man in the Geek’s position might heartily praise his wife for losing so much weight and looking so hot.  He might start hugging her more, being more physical, more complimentary, all the time thinking he’s being a supportive, loving husband.

BEEP! BEEP! BEEP! DANGER, HUSBANDS!

Because your wife, while happy she’s getting skinnier, and happy that her husband is responding so well, will ALSO think “Gee, if he’s this excited that I’m skinny, then he was just LYING all those years that I was fat when I asked him if he thought I was beautiful and if he was happy with my body!”

See the problem?  (Men, I know you’re rolling your eyes.  Get over it.)

Now, me?  I’m aware of the fact that I will think such an unfair thought (because face it, ladies, that really is an unfair thought) so I stated it matter-of-factly to the Geek one night.  “I’m happy you’re happy about the weight loss.  I’m just trying to keep in mind that it doesn’t mean you weren’t happy about my looks when I was heavier.”

So, the Geek went and mulled that over for a bit, and I worked at keeping myself from feeling insecure about how he felt about me through two pregnancies and the last 4 years, and a few nights ago he came back with a comment for me.

“You know how you said you were worried I wasn’t happy with you all those years because I’m so happy with your body now?” he said.  “Well, I think most married men would agree with what I finally figured out tonight, and here it is:  sure I’m happy you look this good.  It’s cool to have a hot wife!  But it’s not like I wasn’t happy with your body before.”

Then he went on, and here’s the ‘men are different thing’ popping up.

“To use a car analogy, it’s not like I went from having a safe, comfy 4-door sedan to having a sports car.  I had a sports car all along – it’s just that now, it got a new coat of paint and the upholstery has been redone.  So it’s a little exciting just because of that.”

Now, I ask you, who could possibly feel insecure after hearing THAT little romantic tidbit? (feel free to laugh – I did!)

Seriously, though, it’s just the way men and women think differently.  It would never occur to a man to have that particular concern, and it would never occur to a woman to make that particular analogy.

But, to tell the truth?  It was exactly what I needed to hear.

Have any of your marriages resulted in a hilarious “she said, he said” moment?