The Bits of Advice I Have Left to Give: Mermaid Soap

Before I had kids I had the very common problem of knowing all there was to know about raising children.  

Once I had two, when they were still both very small, but big enough to be easier than they were when they were tiny, I knew even more and had enough advice to fill this blog with posts every day of the week.  

Now we have five and I have very few set in stone parenting opinions that haven't been smashed to bits by one child or another.  There are things that have worked better than others, but across the board success is rare even when talking about things that seem like they should be simple like sleeping and eating.

But there are still two areas where I find myself giving out advice, usually after being asked, and I thought I'd share those here.  

The first is simple.  There are many, many products on the market for eczema.  Some are very expensive.  We've had a number of kids with allergies, and often the allergies start with eczema, which means we've tried just about every product out there.  We slathered him with coconut oil.  We bought the expensive Aveeno baths and lotions.  And for Patch none of them worked until the day his allergist gave me advice.  

Patch was basically born allergic to dairy.  By one month it was
very clear that something wasn't right, but even while we were still in the hospital
the problems with his skin had begun.

To be honest I thought that the man was crazy.  He said to remove the allergens, which made sense.  But then he said to make up a mixture that was one part Crisco and one part Vaseline.  Around here we call it Mermaid Soap.  He told me to slather it on Patch twice a day (at the time he was a six month old covered in painful eczema) and that it was the best thing he had to offer.  When things were really bad he said to put cortisone under it.  

I followed his instructions and became a believer in the simple, cheap mixture.  And since then I've used it on all of our kids when their skin is dry.  

I imagine, if you didn't have really dry skin, it might be oily.  When you do have eczema your skin basically absorbs it very quickly and that isn't a problem.  

When we returned to his allergist for the first follow up appointment he marveled at Patch's flawless skin.  "You used the mixture?"  He said, surprise evident in his tone.  "No one ever uses it!"  I said that indeed we had because what was the point of going to a doctor and getting his advice with a problem we couldn't solve on our own, if we weren't going to listen to what he said.  

And from then on our eczema problem was solved:

The second question is a bit more in depth and deserves it's own post.  

Because the answers to "How do you know?" And "Where did you start?" when talking about developmental delays are slightly more in depth and I don't want them to be buried in the second half of a post.  

Mermaid Soap: The Greatest Invention Known to Mermaids

"If something were to ever happen to me, you need to know this."  I say the words and Paul shakes his head, but I continue anyways.  This happens a couple of times a year, when a daily ritual becomes such a big deal to Maggie that it becomes set in stone, a part of our day that simply can't be replaced.

 Every morning Maggie takes a bath filled to the brim with mermaid dolls.  I get the other kids dressed and ready in the bedroom and then she sprints in, half wrapped in a towel and excitedly proclaims "Mermaid Soap!  Mermaid Soap!" to the assembly of children searching for shoes and sweaters and that other sock that was in my hand three minutes ago.

"Dry off!"  I say and she repeats the words as she scrubs at her arms and legs with a towel.  "I can't put on Mermaid Soap if you're still wet!"

Then I turn and very carefully slip the jar of Vaseline and Crisco off of the window sill. I keep it hidden behind the curtain. The recipe was given to me by Patch's allergist when he was small and is simple.  It is 1 part Vaseline to 1 part Crisco.  He told us about it after we'd tried every over the counter eczema treatment available.

I'd slathered Patch in coconut oil and every natural remedy I'd heard of when he was tiny, but nothing worked until the doctor gave us that suggestion and I skeptically went to the store and picked up the supplies and mixed them together in the kitchen.

Suddenly he had the softest baby skin I'd ever seen.

So every year when winter arrives and dry skin comes with it, I put together the concoction again and begin to apply it liberally to try legs and elbows.

I have to keep it hidden though, to keep Maggie from covering herself in it from the top of her head to the tips of her toes (Vaseline and Crisco do not wash out of hair easily, if you've never tried it and were wondering).

"Mermaid Soap!"  I announce each morning as I put a generous ball of the moisturizer into the palm of my hand.  Now for the important part.

"Mermaid Soap for mermaid lips.  For mermaid words.  For mermaid songs."

After that it's time for the story.

"It isn't easy for mermaids to speak when they're on land.  It's not easy at all.  And so we have mermaid soap which makes it easier to mermaids to have words and sing their songs when they aren't in the water.  Mermaid Soap for mermaid words and mermaid songs."

I started doing this when her lips were dry and cracking about a month ago and we were battling every morning as I tried to apply chapstick.  When I began using "Mermaid Soap" she was still skeptical until I told her that they were for mermaid words and the story grew from there.

Maggie points to her stomach and then helps me cover her arms and legs in the ointment while I continue the story.  "Mermaids dry out when they're on land.  This keeps that from happening.  This keeps mermaids from getting too dry when they're out of the water."

"Mermaid soap!  Mermaid soap!" Maggie says the words happily then, after getting dressed hands me a brush.  "Mermaid bow?"

Yesterday when I picked Maggie up her therapy tech told me that she has been using so many new words, a statement I've heard almost every day lately.  I'm sure Mermaid Soap is only a small part of the puzzle.  Maggie has been working hard to make us understand her for her entire life and all the hard work she's put in is paying off.

But I can't help but think that Mermaid Soap plays a little role in helping the words come a little more easily but giving her a little extra confidence boost as she starts her day.

And Paul, now you have the script for Mermaid Soap Mornings... just in case.

Goodbye to Allergies?

Earlier this week I realized that the apple sticks I'd been buying had wheat in them.  I couldn't believe I'd made that mistake.  I check labels compulsively.  I recheck labels that I've already checked a dozen times, because time has taught me that labels can change and that just because something was dairy free last month doesn't necessarily mean it's dairy free this month. 

This wasn't a mistake like that though.  I've been buying veggies sticks at Aldi for months now and they're gluten free.  The apple sticks were in the same sort of packaging and for some reason my brain just assumed they were okay. 

In the last month both Sadie and Patch have outgrown their allergies.  It's been amazing.  When the allergist called and said the retest for Sadie showed no allergies at all, and that we could start gradually reintroducing foods and see what happened, I was ecstatic.  And Patch will still get sick if he has regular cow's milk (which he despises) but all the other dairy products he's tested out have been fine. 

Still, I was afraid to even try gluten or casein with Maggie.  You see, she never tested as having allergies like the other two.  She would just get really, really sick every time she ate even the tiniest amount of either food.  The first three times it happened I was still skeptical.  But then it happened like clockwork after every exposure, and I realized that she really, really couldn't have almost all of her favorite foods. 

There were times when she managed to sneak a tiny bite of something with wheat in it, and I'd forget to mention it to her therapists and would get a call a few hours later asking if she'd had gluten because they could tell.  It happened over and over again (as she'd usually manage to sneak something every three months or so) over the course of the last three years, at more than one office. 

So I was stunned when I realized that she'd been eating apple sticks, made primarily from wheat, for a week and a half and hadn't had a reaction.  I quickly texted her main therapist and asked if they'd noticed anything in the last week.  She said that they hadn't, that Maggie was doing better than ever. 

And so we decided to see if she'd outgrown her allergy and that night I let her have three graham crackers. 

I waited.  Would she be up all night sobbing because her stomach hurt?  Would she lose all the words that she has and cry non stop for the next two weeks? 

The answer, for the first time in three years, was no.  She was fine.  When I tucked her in she ran through the names of the Bubble Guppies on her backpack, pointed out and labeled all the colors on it, and then asked if we could go to the "swimming beach."  When I said no we couldn't, it was night, but maybe we could ask Daddy if we can go soon, she asked to go to Daddy's office.  She hasn't even seen his office yet, which added to the general shock I was feeling having just had the longest back and forth conversation (by far) we'd ever had in her entire life.  So we called Paul and asked if she could come see his office soon and she repeated "Daddy's office?" a half dozen times before drifting off to sleep. 

Since then I've let her have a tiny bit of cheese.  He therapy tech said she had another great day, with a huge amount of language, and that she'd been trying to  run her own therapy program, but that she had been a little emotional.  Since emotional days happen now and then anyways, the jury is still out on dairy, but we had another rather long back and forth conversation at bedtime, and so I'm cautiously optimistic. 

I'll admit that this has brought up some questions though. 

Before we moved to Michigan, into an old house built in the 1920s, no one in the family had food allergies.  After living there for a year, all three of our kids had food allergies.  And we were all sick constantly. 

Over the course of the time that we lived there the basement would flood every year (not a huge flood, but a steam going from one side of the basement, through a wall, to the other), along with the yearly backing up of the sewer when the tree roots would grow into the clay pipes, which meant another flood.  I was constantly battling mold with bleach after the floods.  I wouldn't be able to see any mold after I was done cleaning, and everything would look fine, but I wondered.  And worried. 

We've been out of the house for four months now and the three kids who had allergies while we lived there all seem to be allergy free.  No one has been sick since we've moved.  In fact, I feel ten times better than I've felt in years.  And I can't help but wonder if somehow it's related.

I asked Maggie's neurologist at her appointment last week and he said we probably would never really know.  But I can't help but wonder.

Now to make a new meal plan and a new shopping list (that will be spectacularly less expensive).  I'm pretty giddy.  This means we can do things like church picnics and doughnuts after Mass and all the things that were little family traditions that were so hard to give up.

Bamboo Kielbasa Rice

I knew that dinner was going to be interesting last night, because I didn't have a chance to brainstorm any new meal planning ideas, or glance at the ol' Paleo cookbooks that I bought when we first discovered that Patch had allergies and were trying to figure out what they were, much less go to the store to pick up anything for the recipes I hadn't yet started thinking about.

So instead I glanced around the cupboards and into the fridge and began to assemble a lineup of ingredients on the counter.

My goal was to make something that the newly diagnosed kid couldn't just eat, but something that she would actually enjoy eating, since she's still pretty bummed about the news.

For anyone who didn't see the last post about the new allergies, the meal needed to be gluten free, dairy free, soy free, peanut free, and green pea free.  Her doctor also wants us to avoid tomatoes, oranges, caffeine, chocolate, and other more acidic foods.

Here's the recipe that I came up with after double checking labels and coming up with an idea.

Ingredients

8 servings of instant rice
(seasoned with garlic powder, onion powder and salt to taste)

6 ounces of bamboo shoots (which was half a jar)
1 link of kielbasa, cut into small pieces
1 yellow onion, diced
3 cups of fresh baby spinach, washed
2 tbs of garlic
2 tbs olive oil
2 tbs paprika
1/2 tbs garlic powder
1/2 tbs onion powder
1/2 tsp pink salt

Optional: Eggs prepared the way you like them!  I thought that scrambled would be great, but Sadie has informed me that she hates scrambled eggs, so...

In one pot I prepared the instant rice to the directions on the box, adding garlic powder, onion powder, and salt to taste.

At the same time, in frying pan, I added the olive oil and set the burner to medium heat, adding the onion, garlic, kielbasa, spinach, and bamboo shoots and cooking it for about five minutes before adding the paprika, garlic powder, onion powder and salt.  After mixing the entire thing well I poured the meat and onion mixture over the now cooked rice and mixed everything together.

Then I quickly prepared a bunch of eggs over medium, since that's how Sadie loves her eggs, and served them on top (or alongside, depending on the child and whether I thought they'd eat the eggs) of the kielbasa and rice.  

It was an instant hit. Even Maggie, who is incredibly picky was found not only eating her own food, but began sneaking over to swipe bites from my plate too.

This is definitely one recipe I'll be saving for the future!

Soy, Dairy, Peanuts, Green Peas and Other Test Results I Did Not Want to Hear

I knew that today was going to be a busy day.

I started out by making a huge mistake.  I knew that Sadie had a doctor's appointment today and I knew that it was in the afternoon.

So I got up and let Maggie take her morning mermaid bubble bath and I asked Paul to look in the planner and tell me what time the appointment was at.  He reported that it was 3:15 and I went over the day in my head.

The day was full with various therapies at 9 am, 10 am, and 2 pm.  We'd have to pick Maggie up at 12, get everyone fed, and then we'd all have to go along to her speech appointment in order to make it to Sadie's allergy appointment at 3:15.

And then I glanced at my planner and realized that I'd made one of those rare slip ups that comes every couple months when there are too many appointments and things get confused.  There, in large letters, was Sadie's 3:15, but next to it, in small letters, was her pediatrician's name.  I glanced at the top of the day and gasped.

We had missed the allergy appointment at 8:15 hours earlier.  I nearly had a panic attack.  It was actually difficult to breath.

There are three doctor's offices that would have caused the same reaction: Maggie and James' neurologist, the genetic counselor we've been waiting seven months to see, and the allergist, who in the past has had three month wait times for first appointments.

There are offices that might understand a mix up and there are offices that you never ever want to call and cancel on last minute, much less give up a precious appointment, because those spots are hard to come by.

They'd squeezed us in for Sadie's first appointment and I'd missed it.

While I panicked, Paul called the office and explained what had happened.  There were too many appointments scheduled today for the kids and there'd been a mix up.

The amazing receptionist laughed and said that they could see us today at 1:30.  It would be close, getting from the 1:30 appointment on one side of town to the 3:15 (which is technically two towns away from the allergist's office) but if everything went perfectly we could make it, although Paul would be on his own taking Maggie to speech with the two boys in tow.

Disaster averted.

As a quick recap, for anyone who doesn't know our family's allergy history (since I haven't written about it much in quite a while), Maggie can't have gluten or casein or very bad things happen and she is in a huge amount of pain for weeks. Patch finally seems to be outgrowing the horrible dairy allergy that developed when he was two months old (and exclusively nursing). And Sadie was diagnosed with a wheat allergy two years ago.

James is the only officially allergy free child in the house.

So our meals already need to cater to those who can't have gluten or dairy.

But lately Sadie had been having stomach aches every single day.  Then the eczema came back.  Then the hives.  I mentioned it to her doctor and her doctor sent over a referral to Patch's allergist (Sadie's allergy had been diagnosed by her old pediatrician through a blood test).

We arrived early at the allergist's office and I explained the symptoms.  He looked back at her chart and said that the wheat reading was very low, but that it did sound like she likely had celiacs (although testing for that would be nearly impossible since it would involve her eating wheat for the month before the test, and wheat makes her incredibly sick... so that's out of the question).

After listening to her description of her symptoms, he doubted that she had any new allergies, but he said we could test her to know for certain.

The skin prick test was applied and we waited, hoping for good news.  I kept checking her back, reminding myself from Patch's appointments that one of the results was a control poke and that that could look pretty bad.

As I watched the spots grow I wondered if each of the four areas had controls.  And did that one have two?  Or three?

These things can look worse than they are, I reminded myself, thinking of Patch's past appointments.

Then the doctor returned and jotted down the results.

She was negative for wheat, he explained, but giving her wheat now was out of the question because of her past reactions (which involve her stomach getting really, really sick).

And she had tested positive for allergies to soy, green peas, and dairy.

And the horrible looking circle on her back?  That was a very positive test for peanuts.  In fact, her test came back in the most sensitive category for peanuts.

He went on to explain that it sounds as though she has reflux too and would benefit from a low acidic diet, cutting back on juices, sodas, and caffeine (no problem), along with oranges, chocolate, and tomatoes and any other acidic foods that we eat.

He said that if she were severely allergic to pollen that could influence the results, but since her hay fever allergies seem to be mild, that didn't offer much hope.

So we're totally eliminating all of the allergens for the time being and if that helps he said we may be able to test some of the positives again to see if they are making her sick.

It isn't the end of the world... okay, except to Sadie... who it sort of does feel like the end of the world... because no dairy, wheat, soy, peanuts?  That's a lot when you're seven...

We've done this whole allergy thing for over three years now.  We've even done an elimination diet when Patch's reactions were so severe where we eliminated all the major allergens, while we waited for his appointment (which was three months off) for testing.

I still feel horrible for her though.  And a little bit for me (if i'm totally honest)... because I love cooking with cheese and butter... and after doing these years of allergen free cooking and baking (and giving up dairy for over a year when I was nursing Patch), dairy is the hardest for me to avoid using.

And because I I know this means far more cooking from scratch again... which is hard when you're juggling 50-some doctor and therapy appointments every month.  The goal to make the schedule doable on a daily basis, was one meal from scratch, one breakfast meal that was simple and allergy friendly, and one meal using those awesome g.f. options from Aldi... and that will be more difficult now.

Hopefully though it will mean an end all the allergy problems we've been seeing, and that we'll be avoiding altogether whatever might have happened if we hadn't found out about the peanut allergy, since the test results severity is rather frightening (even as a mom with an epi pen in every bag).

And maybe this will mean more allergy friendly recipes popping up again here in the near future.

If I can find the time to sit down and jot them down with all the baking and cooking from scratch that's going to have to happen!    

Oreo Brownies and Making Everyday Recipes Gluten and Dairy Free

I have a tendency to be sucked in by those delicious looking cooking videos that are constantly popping up on my Facebook screen and as often as not, they're so tasty that I share them to my wall so that I can find them later.  

As a result, and because most of my friends know that most of the kids in the house have some kind of food allergy that wouldn't work with 99% of those recipes, I have a lot of people who have asked, or commented about how funny it is that I pin these recipes when most of the people in the house can't even eat them (and don't feel bad if you've asked!  So many people have been curious about why I save all these recipes, so I wanted to share!).

The truth is though, that 9 out of 10 times I'm not filing them away to whip them up as they appear in the videos (that tenth time I totally am and I actually am planning on baking and making the sugary monstrosity when the kids are already tucked into their little beds).    

Most of the time I'm saving the video for ideas, because over the past three and a half years since we became an allergy family and I began desperately searching for gluten free and casein free recipes, I've learned a few tricks so that I don't pull out my specialty cookbooks all that often anymore.  I'm far more likely to take a regular recipe and substitute things that I know are gf/cf and adjust things so that it works out.

At the moment I'm far less into baking "from scratch" than I was three years ago (let's blame the baby bump that forces me to sit down more and more often for breaks) and so I appreciate mixes far more than I did when I first started out.  And since I've discovered Aldi and their Live Gfree products (although always double check if you're dairy free, because not all the Gfree products are...) making many of these recipes has become even more affordable and fun (and no I'm not being sponsored by Aldi to say that... I'm just grateful that they've cut my grocery bill by more than 50% since I started shopping there last year).  

This particular recipe was a brownie Oreo concoction.  The only thing I didn't already have to the recipe in my cupboards were GF Oreos, so I made a note to pick them up at the store.  And then I had everything that I needed.

After greasing the pan with olive oil I put in a layer of the brownie mix.  I prepared it according to the directions on the box:

Next came a layer of those GF cookies:

More brownie mix:

This is where I made a mistake.  I should have added the remaining crushed oreos first.  Instead I heated up the frosting for a bit to make it pour-able and put it on top of the mix.  I'd suggest crumbling the cookies as I'll do in a few photo first and mixing them in so that you don't have to add the frosting twice:

Here's what the oreos look like before you mix them in:

And here's where I realize I made a miscalculation with the frosting:

So I added a bit more frosting.

And I baked per the boxes instructions.

Okay, so maybe I should have left the frosting out altogether.  Either way it was clear by then that the finished product would be warmly received by the kids:

I topped it with coconut milk whipped cream (the solid part from canned coconut milk, whipped with a bit of vanilla and powdered sugar):

And since the kids were clamoring for brownies I didn't get the best photo of the finished result, but I think this photo says it all:

These brownies were definitely a hit!

I think the one thing I've learned over these last few years of baking is not to be afraid to experiment and try to substitute in gluten free and casein free options for regular cooking supplies.  There are certainly some misses (or at least recipes that aren't as pretty as the ones in the photos) but there have been many hits as well.

So if you are cooking for those with allergies and you want to try something knew, remember that inspiration can come from more traditional sources!

And if you know me I'm not just being mean baking things my kids can't eat!  It's allergy baking inspiration!

Diary of an Anniversary

Late last night I thought I'd jot down a not so quick look at our day, for anyone who's like me, and enjoys reading these things (the pictures are not from today, since it was so busy I hardly snapped any):

6:05 am- "Mommy, me and Maggie are awake!" The words echo through the house.  I lay very still and glance at my watch.  It's time to start the day and any time after six is now considered "sleeping in."

6:10 am- I'm about to begin my early morning writing session when I remember that it's our anniversary and yell Happy Anniversary down the stairs to Paul.  I hear him call back that he knew I'd forget.  I'm not sure remembering before 7 am counts as forgetting.  My brain just isn't totally firing on all cylinders immediately upon waking, especially after nursing the baby at least six times during the night.

7:10 am- I should have started getting ready for the day five minutes ago, but I was so, so close to hitting 80,000 words in my story that I kept going.  I do a little dance (okay, in my head, it's still too early for actual dancing) and close the computer and then attempt to wash my hair and get ready in five minutes.

7:23 am- I wander downstairs with my computer, which now has a dead battery.  I leave it on the stairs and find my calendar, flipping it open to see if Patch has speech this morning.  My calendar informs me that Maggie has therapy at nine, Patch has his dairy challenge at 1:30 and Maggie has OT at 2.  The dairy challenge and OT session are a half hour drive apart.  Getting everyone where they need to be is going to be tricky.

8:00 am- I'm upstairs getting Maggie out of a bubble bath when I hear Sadie say that there was a knock at the door.  I call Paul and ask him to help Maggie get out of the tub and race downstairs to meet Patch's speech therapist while still in the yoga pants and t-shirt that I put on the paint the play room the night before, and lazily decided to wear to bed.  Apparently my initial thought that he had speech today was correct and I'd only written it down on the wrong spot.

8:04 am- The girls are settled in their room, and I've gotten Patch dressed.  He has therapy and I read over the evaluation done by his therapist and one of the special education teachers who evaluated him at playgroup last week. I read about how he played with blocks, puppets and said hi to another little boy, and the only real concern anyone has is that his words are still unclear about half the time when he speaks.   I sign the papers that I need to sign and double check the spot when I write in his next session.

8:40 am- I race upstairs and wake up Paul so that he can take Maggie to therapy.  He worked until around 1:30 and then came home and spackled a wall, but he gets up and takes her to her therapy session while I finish Patch's session.

9:03 am- Paul comes home and collapses into bed, while I start school with Sadie.

9:10 am- While Sadie makes a half dozen trips to the kitchen to ask me questions about what she's reading, I make pineapple strawberry spinach smoothies for Paul, Sadie and I.  Sadie and I drink ours and put Paul's in the refrigerator.  Then I settle in to help her with her school work.

9:13 am- James is starving.  It doesn't matter that he just ate an entire container of baby food, he's ready for his nap and that means nursing.  I multitask, helping Sadie and nursing him, until he falls asleep. During moments when Sadie doesn't need my help I read the Book of James in the Douay Rheims Bible on my Kindle.  Our pastor has challenged us to try to read more scripture, starting with James and I'm trying to make sure I make time in my day.

9:25 am- I sneak across the room and manage to successfully put James down on the floor and sneak back over to the dining room table so that I can help Sadie with her schoolwork when she needs help.

11:29 am- While Sadie works on some big subtraction problems I go upstairs and tell Paul that it's 11:30.  He doesn't believe me.  I show him my watch.  Then I explain that we have a lot to do and lay out the schedule for the day.

11:50am- Paul picks up Maggie from therapy while I quickly throw together lunch.  We won't have much time for eating once they get home.

12:10 pm- Paul and Maggie arrive home.  Maggie is clutching a small pink crown that someone brought and gave her for at therapy.  Paul explains that it's a "ballerina crown" and that she's been repeating the word ballerina since he's picked her up.

12:12 pm- Paul tells me that Maggie got away from her therapist while they were walking out of the office for the second time in a week and dashed into the parking lot (next to a giant busy road).  My heart feels like it's stopped.  I repeat "but her plan says there's supposed to be hands on her at all time" in my head at least fifty times.  I ask a dozen questions and none of the answers make me feel any better.

12:40 pm- We load all the kids into the car.  We drive to Burger King and pick up the very first milk shake that Patch will ever taste in his whole, entire life.  It's a moment he's been waiting for, for a very long time.  His allergy began to show up when he was around a month old (through nursing) and he has never in his life had anything with dairy products in it.  After passing his allergy skin prick test last week he has a dairy challenge today.  I'm really nervous about the idea of giving him the thing we've spent almost three years avoiding.  I'm also really excited for him.

1:00 pm- We stop by Paul's old work place so he can pick up his last paycheck.  We wait in the car while the manager complains that he doesn't work there anymore and is rather nasty about it.  I mentally write a post about what a horrible, horrible place to work this particular business was (10 management changes in 14 months, many walking off the job in the middle of a shift... because it was apparently that bad for the managers too) and give thanks that he got a job offer from one of those managers who left last month.  I barely manage, with all the self control in my entire body, not to write that particular rant and I try to make myself promise not to write it ever.

1:15 pm- We drop Paul and Patch off at the allergists office.  As we drive to the hospital for occupational therapy I realize that Maggie's session is supposed to be in the pool.  I take a side road that takes us away from the busy part of campus and manage to cut a few minutes off the time it takes us to get home.

1:29 pm- I park in front of the house, unload the kids, run down to the basement, find Maggie's bathing suit, get her dressed, make sure I have a change of clothes and a towel in her backpack and then load all the kids back into the car.  There's a very good chance we're going to be late.

1:59 pm- We make it to the office with less than thirty seconds to spare.  Maggie is thrilled that she gets to go in the pool.

3:00 pm- OT is over and I load everyone back into the car.  We take the back way again and drive back over to the allergists office.

3:20 pm- We make it to the allergists office in record time.  Paul brings out Patch and tells me that I need to call the allergist and give the nurse updates, first when we get home, then again in the morning.

3:27 pm- Patch says:  "Mommy.  Tummy hurts.  Tummy!  Tummy hurts!"  He tells me at least our times over the course of the coming hour.  He also tells me no one gave him his milk shake.  Paul explains that they took it and gave him tiny amounts in increasing sizes, so he never realized that he got to drink it, because he didn't get to have it out of the cup.

3:29pm- We drop of Paul's paycheck at the bank and then head over to Meijer to pick up a huge box of diapers.

4:34 pm- We've made it home.  We unload the car.  I go inside and realize that the Pope has arrived.  After a few tips from friends I find the Mass when it comes on and put it on the computer.

4:36 pm- Paul reminds me that we need to call the allergists office.  I tell the receptionist why I'm calling and she asks how he is.  I explain that he seems great, but has complained that his tummy hurts four times, although he's running around and playing.  She transfers me to the nurse, who isn't thrilled with the tummy ache news.  She relays it to the doctor and I'm instructed to call back tomorrow with another update.

4:48 pm-  Sadie comes over to the kitchen door.  I tell her the Pope is in the US.  She tells me she's really excited to meet him.  I freeze.  Do you remember the invitation from earlier this year that was basically an advertisement to buy something, but was placed in the form of an invitation to "meet the Pope?"  No?  Well Sadie does.  And she was certain that it was real.

4:49 pm- I deliver some disappointing news.

5:21 pm- Paul returns with burritos for our special anniversary dinner.  Sadie tells Patch that sometimes people in Michigan enjoy eating Mexican food, possibly because she notices him not eating his.  Patch, who is not a fan of 99% of foods, and refuses to touch his dinner 90% of the time, sips his almond milk.

5:55 pm- Maggie asks to go up to sleep.  Paul takes her upstairs and tucks her in bed.

6:04 pm- I start scrubbing one of the walls in the playroom to get it ready for primer and suddenly I have all the help I could possibly ask for.  Both Sadie and Patch are scrubbing alongside me and James is trying to open a container of wipes to join in the fun. The house is cleaned in record time.  I'm rather impressed.

6:30 pm- Paul takes a sleepy Patch up to bed.  I set James up with some toys (and his sister) in the living room and try to discreetly paint the wall around the corner in the playroom.  I'm halfway through when James comes over and repeatedly tries to steal the paint can from me.

7:32 pm- I finish adding a second coat of paint to one part of the room and a first coat to another.  I calculate that at the current rate I will be finished in exactly one week before the dark plum and peach paint in the play room (really the dining room) will be covered.  Even with just the primer painted on half of the room our downstairs already feels much brighter.

8:00 pm- Paul leaves for work.  He sneaks out the back door so that James doesn't see him leave and have a complete meltdown, the way he does when any person, family member or therapist, leaves the house without taking him outside to play.

8:01 pm- I take Sadie up to bed and try to get James, who's attacking the walls trying to find wet paint (thankfully I did the lower part while he was asleep, so he only manages to find one little section that was damp) to go to sleep.  He resists, rolling around the bed at high speeds while I keep him from falling off and laughing maniacally.

9:10 pm- James is asleep.  Finally.  I very quietly sneak downstairs and grab my computer and turn off the lights.

9:11 pm- I start writing this post.

10:15 pm- It's time to close the computer and drift off to sleep.

The Great Casein Debacle of '15

I've been muddling through a tough couple of months.  Maggie is usually such a happy kid, and she's made some major accomplishments in the last few weeks, but she also hasn't quite been herself.

She's been less attentive and more in her own world, more prone to meltdowns (going from maybe one a week to three a day) and more likely to lash out at me or collapse on the ground, banging her head hard against the floor as she falls.  She sleeps more, and needs 13 hours a day, but sleeps less well and has seemed exhausted much of the time in the morning.

Worst of all my usually cuddly girl has hardly wanted to cuddle at all.

For two months I've wracked my mind trying to figure out what had changed, praying that this unhappiness wasn't the new normal and feeling like, for every gain we had a dozen days that were extremely hard.  And I'd watch and watch and try to figure out if she'd had gluten or casein because all these problems have popped up in the past when she's had even a tiny bit of cross contamination.

Yesterday I was speaking with a new(ish) therapist who's been with her for a couple months.

Now in the interest of total disclosure in this post I should probably mention that I had noted that many of these problems seemed to begin at roughly the same time as the introduction of a new therapy... but I'd been with her in the sessions before Paul started his new job and now I wait with the other kids in a room next to the room she's working in, where I can hear her happy voice but can't see what's actually going on.

I won't specifically name the therapy here, but let's just say it's a very mainstream therapy that tons of kids get, on the spectrum and off, that she'd be getting in school if she was in school, and it's one we fought long and hard for that she seriously needs.  So it felt insane to be actually considering pulling her out of a therapy that I'd fought for her to get into for over a year.  It had to be something else, I kept telling myself.

Yesterday after her session her therapist and I were talking about tools she was going to give me to work with Mae on while we're away this summer.  She told me that Mae really likes applesauce (which I'd okayed), marshmallows (which I'd okayed), and... M & M's.

I'm pretty sure time slowed down at the mention of M & M's.  I listened as she continued to talk and took a deep breath and managed to force my voice to sound steady and pleasant when I said:  "Oh, about the M & M's.  Make sure not to ever give her those again.  She can't have casein."

Now this is in her files and charts and is told to every therapist who works with her (which is why we discussed the other foods at an earlier date).  She wears a bracelet that proclaims that she cannot have wheat or dairy.  And it's also pretty standard for a lot of the kids getting therapy around here.

She replied that it was only "a little bit" and I nodded and didn't have a meltdown of my own right there in the center.  I won't go into how much self control that required, but let's just say it was not a little.

On the one hand I'm now hopeful that in a couple weeks we'll see some major improvements in how she's feeling, sleeping and just in her general happiness.

In the past it's taken about 2 weeks for her health to improve after she's had gluten and casein (in the last two years this has happened about a half dozen times and every time the behaviors have started it's later been discovered that she's been exposed to something she shouldn't be... once it was playing with play dough...).

So we'll be muscling through the coming days and focusing on that light at the end of the tunnel.

This morning we went to the local Autism Acceptance 5K.  We didn't end up walking far, because Patch was having a tough day, but Mae is still proudly wearing her shirt and a medal that one of the young men working at the race gave the kids.  And she ran up and down the pathway singing "run, run, run, run!"

Hopefully today's the first day on her road to feeling better again, and it got off to a good start.  And hopefully this is the last time we have this problem... at least for a very long while.

A Near Disaster: When Non-Dairy Doesn't Mean Non-Dairy

I love Meijer.  I feel like I need to start by saying that, before I get down to the meat of this post.

After living in California and Florida and now in Michigan and having driven back and forth across the country several times during those moves, we've gotten to test out quite a few different grocery chains and Meijer is my favorite.  After all, what other store has Sandy the horse (along with just about every other thing that we could possibly want or need), who the kids can ride for a penny.

Sandy makes Meijer a favorite for two out of the three kids that are old enough to sit up in our family (I've convinced Mae to pet Sandy, but she refuses to go for a ride):

I had to start with that before I go on to make my next point.

I'm writing this post because when I was starting out as a parent of with kids with newly diagnosed food allergies I had no idea how tricky identifying allergens could be... and our trip to Meijer this week, where I made a major error by trusting a misleading label, is a perfect example of how mistakes can happen.

If you haven't been to the blog before. or haven't been around long enough to know the whole allergy story, we have three (and it looks like now four) kids with food allergies.  One is allergic to dairy.  I carry an epi-pen and Benadryl with me everywhere for that little guy.  One is allergic to wheat.  And one can't have wheat or dairy.

Our newest little guy, who is five weeks old today, is miserable for days if I eat dairy, so it looks like he's set to follow in his big brother's footsteps.

As you can probably guess, I spend a lot of time reading food labels.  And when I go shopping I often have a six year old who follows me around and says "Does that have wheat in it?  Are you sure?" Every single time I pick something up off the shelf, because she's old enough to understand how sick wheat makes her and she's hyper vigilant about every single thing that passes her lips because she doesn't want to feel like that ever again.

Earlier in the week when I was shopping I was in a hurry.  Paul had all three kids in one of those nifty shopping carts with enough seats for three kids and my goal was to make it through the store before anyone started screaming.  I had James strapped to my chest and we were making our way through the store as fast as we could, when I spotted this:

I'll admit I thought "Hmmmm... I wonder what's in that?  Petroleum by-product perhaps?"  and then "I wonder if it tastes like the real thing?" and finally "It'll be a special treat!  I mean there are so many things that we can't have..."

With Thanksgiving coming we could even have it on the pumpkin pie!

That night I tried it on our dairy free ice cream.  It didn't really taste like whip cream at all.  I wouldn't buy it again based on flavor (but let's face it, few dairy free things really taste like their dairy counterparts.  They might not be bad... but they seldom taste like the real thing.).  But I ate it, because it was on top of my ice cream, and went on with my night.

In the early morning hours, James was miserable.  He spent the next day looking at me like this (when he wasn't crying and throwing up):

I didn't think much of it.  He's been fussy for weeks.  Maybe the dairy wasn't totally out of my system yet.  It was a possibility.  And within a couple of days he was feeling much, much better.

A few days later I made gluten free dairy free waffles for the kids.  I had blueberries in the refrigerator... and the thought of whipped cream topped blueberry covered waffles sounded really, really delicious.  I went to the refrigerator and grabbed the "non-dairy dessert topping" and was about to add it to the waffles when I thought of Sadie saying "does that have wheat in it" every time I pick something up in the grocery store.

The bottle said dairy free but was it gluten free?  I couldn't imagine whipped cream having gluten but still, it was best to check.  I didn't want the girls to get sick.

I turned to bottle over in my hand and was shocked by what I saw:

Contains Milk.  I turned the bottle over and read the words again.  "Non-Dairy."  I flipped it back over and read the allergen disclaimer again.  "Contains: Milk."

Below it an explanation was provided.  "Sodium Caseinate is not a source of lactose."

Sigh.

That means it's okay for people who are lactose intolerant.  People who are lactose intolerant don't have enough of the lactase enzyme to break lactose down into simpler sugars.  People who can't tolerate lactose might have stomach cramps, nausea and diarrhea if they have something (like milk) that has lactose in it).  Lactose intolerance isn't life threatening.  It isn't an allergic reaction.  For kids that are allergic to milk proteins (Patch) or who have a casein sensitivity (Mae) lactose isn't the problem.  Here's a more complete explanation:

"Milk allergy should not be confused with lactose intolerance. A food allergy is an overreaction of the immune system to a specific food protein. When the food protein is ingested, in can trigger an allergic reaction that may include a range of symptoms from mild symptoms (rashes, hives, itching, swelling, etc.) to severe symptoms (trouble breathing, wheezing, loss of consciousness, etc.). A food allergy can be potentially fatal."  Source 

Sodium Caseinate is casein.  It's the thing that I have spent the last year avoiding at all costs for Mae.  The idea of it in her system makes me feel like hyperventilating.

I had taken Non-Dairy to mean that the product didn't contain Dairy not that it didn't contain lactose.  A much more accurate (and less dangerous) label would have been to label it lactose free like all those other products that contain dairy but don't contain lactose for people who are lactose intolerant.
I'm taking this as an important reminder.  Labels aren't always accurate.  As a parent of a kid with food allergies I have to be vigilant and look past the front label and then hope that I catch everything on the back label so that I don't end up with a sick kid, or worse yet, end up needing that epi-pen (and frighteningly, there are even worse case scenarios because allergies can be fatal).

And I hope that Meijer takes steps to change the label to make it less confusing.  With that big "Non-Dairy" label on the front of the product there are people out there who are bound to think that it's actually free of dairy... and with a serious food allergy making that mistake could be fatal.

Goodbye Grumpy Face?

We'll have to wait and see but it kind of looks like the instances of grumpiness of this house have been vastly reduced by cutting dairy out of my diet.

It was pretty easy to guess the likely culprit this time, since two out of the other three kids can't have dairy.  I'd figured that if dairy didn't have an effect on James' reflux and discomfort I'd try wheat next (since two out of three also can't have wheat) but it looks like dairy is the culprit.  James has been sleeping much, much more soundly and has been spitting up maybe once or twice a day instead of twenty times a day... after cutting dairy out of my diet for a grand total of two days.

When I took Patch to the allergist this last week I mentioned that the kids primary pediatrician doesn't believe that babies can have allergies and asked how young he had seen allergies in babies.  He said that his father, who works in the same practice, had seen a baby at one day old with food allergies and that food allergies were really possible at any age.  With our family history we think it's pretty likely.

Thankfully, despite all the spitting up, James is still growing and was in the 97th percentile for height at 22 1/2 inches at his one month appointment and the 75th percentile for weight at 10 lbs 10 ounces.  And hopefully he'll be a lot more comfortable now that we've (hopefully) figured out why his little tummy was hurting so much!

Patch's Big Scare

I felt like this post needs a warning before the start, in the wake of the loss that many have felt in the Catholic blogging community this past week, since this touches on the same frightening subject of insect stings and allergic reactions and I wanted to give anyone struggling with and mourning the loss of a beloved member of our community the chance to skip it.

Last night held one of the most frightening moments of my entire life.

And I totally didn't see it coming.

We were out at dinner with a good portion of our extended family having driven up and down the west coast to be here for my grandfather's birthday yesterday and my grandparent's anniversary party today.  My parent's had found a cute little restaurant down river (which basically means further into the middle of nowhere from where they currently live) and had gone in and found out that they had gluten free and dairy free options for pizza.  So we all drove in a string of cars down the twisting roads, watching the river at the bottom of the cliffs below, in the sizzling triple digit heat.

We got to the restaurant and sat at a beautiful polished naturally shaped wooden table.  The doors opened and closed frequently, both to let guests onto the patio, to let people in and out from the driveway and to bring food in from the outdoor pizza ovens, and several flies had squeezed through and were buzzing around, but no one minded.  Patch was across from me with his little seat strapped tightly on to on of their tall chairs, happily looking around the room.  Suddenly he started to sob. He bent over the side of the chair and hung stared at his legs, screaming. I tried to get him to take a sip of his water but he refused and so I slipped off my seat and took him outside where we visited with family members who'd drifted out to brave the heat to look down at the river. 

Patch calmed down for a few minutes but was sullen and not himself.  He's usually our little social butterfly, babbling and shouting new words in his little baby voice with a smile on his face.  I thought that maybe he was tired, or hungry and I bounced him and cuddled him.  He started to scream again.  I took him inside to get out of the heat and he calmed down for a few minutes, but when the pizza came, covered in olives just the way he likes (it's one of his favorite foods) he started to sob again. 

I scooped him back up and tried to figure out the best place to take him.  Outside was hot and there were people eating.  Inside was full of people also eating, who I didn't want to disturb.  My mom offered to try calming him and I suggested maybe she try walking while holding his hand, thinking that might make him happy.

When she put him down we all noticed instantly that his legs looked like they were severely sunburnt from the knees down.  The waitress sweetly brought out essential lavender oil to help the "burn" and mom and I wracked out brains.  He had been in the sun maybe five minutes all day and while he looks like he has his Daddy's fair skin he's outside constantly for long stretches of time and hasn't burnt. He'd done a lot of playing in the shade, but had spent the entire afternoon indoors to escape the heat. 

When he tried to walk he limped heavily, favoring one leg and screaming while moving stiffly.  I scooped him back up and we gathered up the girls, said quick good byes, and took him to the truck.  I strapped him quickly into his seat and we headed back towards town.  His legs, as I looked at them more closely, started to look a little less solidly red and more splotched red with little swollen patches. 

And that was when it started to sink in that maybe, just maybe he was having an allergic reaction to something.  He'd started screaming before the food came, so I didn't think it was anything that the restaurant had done.  I watched his face as my mom navigated the twisty road.  He started to cough between every breath.  His top lip started to look bigger.  Then his face started to look puffy, especially on the right side.  I did everything I could think of to calm him but he was inconsolable. 

I just about always bring chewable antihistamines with me because of Sadie's allergies, but a few days ago I had moved my wallet into a small purse with two diapers, my cell phone and Patch's epi-pen for quick trips and the medicine was still sitting in the house.  I sat turned in my seat, listening to his breathing under the coughing, believing I was seconds away from reaching into my bag and grabbing an epi-pen to jam into his upper leg. 

I think I managed to sound calm, both for the kids and because my mom had enough on her mind navigating the 25 mile per hour turns with plunging drops below knowing that something was going on and that it wasn't good, wishing we were in cell phone range to call the hospital, and knowing that I was going to have to tell my mom not to turn and take him another twenty minutes into town to the ER, while worrying about when to use the pen.  He could still breathe, but the swelling and coughing was terrifying.  And so I did the only thing that I could do and prayed and prayed and watched him and waited for a change, either for better or worse.

Finally, about five minutes from our turn to go home, he stopped coughing.  Then he stopped crying.  His breathing sounded normal.  He reached over and grabbed my hand.  His lip started to look normal.  His legs were still splotchy, but didn't seem quite as fiercely red.

Ten minutes later when I asked him if he was okay he said "yeah!" and when I asked him if he had an ouchie he shook his head no.  When we got home and unloaded him I could see a bright red pin prick on the back of his knee, with a half moon shape below it. 
I gave him a dose of Benadryl and a bath and watched as he played and splashed and laughed, as though he'd completely forgotten about how horribly he'd been feeling a few minutes earlier. 

As he fell asleep I sat on the futon in the room outside his room and listened for signs of trouble.  He was fine.  He slept soundly cuddling his stuffed puppy.

This morning I checked his legs.  The splotchy red and white pattern and swelling were gone.  His skin was smooth.  All that remained was the tiny pin prick mark with a bit of a crescent shape below it on the back of his knee.

Monday morning I'll be calling his allergist to make an appointment for when we get back.  About a week before we left Michigan he tried to rescue a bee from the baby pool by picking it up between his fingers and was stung.  At the time I had watched him carefully because of the allergies in our family, particularly in Patch, (and because my paternal grandmother carried an epi-pen for bee stings because she was severely allergic) and had felt a little relieved when he'd seemed completely fine, while at the same time remembering hearing somewhere that usually reactions don't happen the first time a person is stung.  So I'm sure we'll be looking into allergies for stings.

Patch has had allergies since he was two months old, so I've basically carried epi-pens with me his entire life.  So far he has never needed one.  There have been times when I've grabbed my bag to go to Mass or to the store with him and have realized once we were out that the pen was in another bag and hadn't really thought it was that big a deal. After all, he'd never had a reaction that had been close to needing one. 

After last night I'm going to be hyper vigilant about always having both antihistamines and two of his epi-pens in my bag, because while I was frightened, knowing that those pens were in my bag offered a tiny bit of peace and I cannot imagine what it would have been like if last night had been one of those days where I had carelessly forgotten them in my other bag. 

I am so, so grateful that he is okay and now hope that we can find out exactly what it is that we're going to need to be careful about from here on out.