The Poop Collection Conundrum

 
Leave a comment

Definition of Conundrum: “an intricate and difficult problem.”

Did I mention the sheer volume of tests the GI ordered for Mr. Happy and Mr. Charm?

Mr. Charm's tests are on the left, and Mr. Happy's tests are on the right.

Mr. Charm’s tests are on the left, and Mr. Happy’s tests are on the right.

Did you catch that they are STOOL samples?

I wasn’t too concerned…I’ve collected LOTS of poop from my kiddos over the last two and a half years!

Until the time came to start collecting.  I have NINE vials of poop to collect for Mr. Happy alone, plus a urine sample.

Dude.  He’s EIGHT MONTHS OLD.

This should be fun…

So they gave me some nifty little bags to place over his, um, privates, to collect the pee.  They work pretty well, actually.  Except, if you don’t watch them carefully?  They leak.

That’s not too big a problem, as I managed to collect almost all the pee we needed at one time.

But the poop…ah, the poop.  THAT is a problem!

He’s an exclusively breastfed baby, who has been having mild reactions for months now.  That means his poop is incredibly liquid-y…meaning that it soaks in to the diaper so fast I can hardly collect any!

I scraped poop out of his diapers from Tuesday through Monday – a full 7 days – and only had enough to halfway fill one tube.  

Only 8.5 more tubes to go!  Ack!

Of course, the problem is that the poop has to be “fresh” in order to run tests on it…so that tube was useless because some of the poop in it was so old!

I wracked my brain trying to think of a way to collect more poop.  First I thought ‘rubber pants’…but the only ones I could find were in a size 2T.  I thought they still might work for what I was trying to do, but…well, see for yourself!

I had to use a "chip clip" to even get it to stay on, and there are still HUGE gaps everywhere!

I had to use a “chip clip” to even get it to stay on, and there are still HUGE gaps everywhere!

He peed once, it went everywhere, and I decided the rubber pants weren’t going to work.

Finally I had exhausted all the options available to me in Atlanta and went to my resident experts, the Mamas on FB.  I asked if they had any brilliant suggestions…and they did!

For starters, they concurred that my idea was a good one, but of course, I would need rubber pants that fit.  The other brilliant idea was to use the urine collection bags, remove the foam from the edge, and stick it on his butt.  Then leave him basically diaper free and wait until he’s pooped into the bag!

That sounded pretty good to me!  Only, we didn’t have enough bags.  I still had more pee to collect and there was only one more collection bag in our stash.

No matter; Mr. Charm’s samples were all collected and ready to go (he’s two, after all, and poops A LOT more!) so I decided to drop his samples off at the lab and ask for more collection bags.

Turns out, we’d been shorted one vial at our original lab visit; they gave us the missing vial and sent us on our way, informing me that by the way, this lab location doesn’t stock urine collection bags.

Greeeaaaaat.

Tuesday was our appointment with the dietician, and I knew the lab in their building had the urine bags.  So I went home, hoped Mr. Charm would poop before we went to the dietician, and waited.

Thank goodness, he did!  So once again, we were ready to turn in his samples at the lab.  This time, we turned in all of his samples, and the wonderful lab tech that did Mr. Happy’s blood draw was just full of good news.

First he had to tell me that the one tube I sort of had ready was no good because of the age.  But THEN, he informed me that the amount I had in the tube was more than enough to run tests on!  Apparently, the “Fill to this Line” mark on the tubes is meant more to prohibit people from filling OVER that line than saying it needs to be full TO that line!

He assured me that 1 TBS of poop in each vial was enough.  Whew!!  That will make it a LOT easier to accomplish this goal!

Then he assured me that the urine I had collected was enough for the urinalysis, even though it wasn’t quite at the line he had previously marked to tell me how much to collect.

So, one test down.

And the others will be easier to do.

Mama felt better already!

Our wonderful lab tech replaced the poop-tube-that-was-no-good with a new one, gave us a LARGE stack of urine collection bags, and wished us a safe flight home.

Seriously, y’all…everyone we dealt with in Atlanta was absolutely wonderful.  It was a direct 180 off of how our previous medical experiences have gone!

So now we get to collect the rest of the poop samples, find a LabCorp location near us, and drop them off in a timely manner.

Once the tests have been run, the three brains will get together and figure out what/where/when and why to do whatever comes next for the boys.

I am thrilled!

Well, except for the collecting poop part.  But honestly?  It’s not that big a deal.  The Geek and I spend so much time examining, smelling, picking through and talking about poop that it is hard for us to remember that for some people, even thinking about poop turns their stomachs.

We make interesting dinner guests.  <grin>

__________

Tomorrow will be the big reveal of the third FPIES brain to join our team: the Dietician!

And…just because it is SO cute…a gratuitous Mr. Happy shot of him examining a window:

So stinking cute...

So stinking cute…

Our New Team – The Allergist

 
1 Comment

After meeting up with the grandparents (my Mom and the Geek’s Dad) and Mr. Charm, we left to go find some food for me to eat.  We were quickly interrupted by a phone call from the allergists office asking if we were okay and where we were.

I was a bit confused by this, as I thought we had about 50 minutes before the next appointment.

Did you know that if you schedule an appointment in your iPhone calendar for 2:00 p.m. while in Central Standard Time, and then travel to the Eastern time zone, your iPhone will automatically roll the appointment time forward to 3:00 p.m.?

Yeah.  Obviously, I didn’t, either.

Dr. S’s office was incredibly gracious and understanding about it, though!  We raced back as quickly as possible and were promptly shown into an examining room.

If I had warm fuzzies about Dr. G, let me just say that I wanted to MARRY Dr. S’s entire office!

His receptionists were professional, pleasant, friendly, and just as sweet as could be.

His nurse rocked. our. world.  She let Mr. Charm help take his and his brothers blood pressure (by pushing buttons on the machine), brought him a portable DVD player to watch “Finding Nemo” while we were in the appointment, teased with him, and just made everything easier for the kids.  When it came time to mark them up for prick testing, she let Mr. Charm mark his other arm with a pen while she marked the arm she was testing, and made sure to let Mr. Happy have a marker to hold while she marked him, too!

Then we met the Doctor his-own-self.  Tall, handsome, composed, and young.  He was gentle, soft-spoken, precise, professional, warm, kind, and absolutely, hands-down, the most natural person with babies I’ve ever seen!

I know I’m totally off-topic here, raving about the doctor, but I honestly think every person in that examining room had a little bit of a crush on him! (Well, maybe not the Geek’s dad, actually.  But the rest of us did!)  It’s a shock to me that this man is still single with no kids – he has “family-man” written all over him.  Any single ladies in Atlanta?  I have JUST the guy for you!

Ahem.  OK.  Gushing over.  Back to the appointment.  

We discussed the boys and their histories, and then he prepared to do their prick tests.

He brought in the order sheet, handed me a marker, and let me mark which tests I was most interested in having run on the boys!  Of course I asked his opinion, but it was nice to not be dictated to.  In the end, we selected the following:

Mr. Happy:

  • milk
  • fresh milk
  • casein
  • egg white
  • egg yolk
  • peanut
  • cocoa
  • broccoli
  • corn
  • almond
  • brazil nut
  • cashew
  • hazelnut
  • pecan
  • pistachio
  • walnut
  • coconut
  • codfish
  • tuna
  • crab
  • shrimp

Mr. Charm:

  • milk
  • fresh milk
  • egg white
  • egg yolk
  • peanut
  • rye
  • strawberry
  • corn
  • almond
  • brazil nut
  • cashew
  • hazelnut
  • pecan
  • pistachio
  • walnut
  • coconut
  • codfish
  • tuna
  • crab
  • shrimp

The ONLY test that came back with an IgE reaction was the egg white for Mr. Charm.  MR. HAPPY DID NOT SHOW ANY REACTION TO DAIRY THIS TIME!!!  One less Epi-pen to carry around?

Mr. Charm’s reaction was a 5/10.  Dr. S uses the ‘new’ prick test measurement, and I’m not exactly sure how it corresponds to the ‘old’ measurement (1+, 2+, 3+, 4+).  However, as I understand it, the prick test simply measures the sensitivity level of an allergen, not how large the reaction will be to the allergen.  So, even if Mr. Charm is less ‘sensitive’ to egg, he may still have large reactions to egg…so, he still carries an Epi-pen.

However, Dr. S said that as soon as we were comfortable, we could begin our own home-grown version of allergy shots: make a batch of a dozen muffins using one egg per batch.  Give Mr. Charm about 1/8th of one muffin on day 1.  The next day, if he did okay, give him 1/4th.  Still okay?  Go to 1/2 the next day.  And so on.

Start with baked egg, and if he does well, we will move on from there.  This will build a tolerance level to his particular allergen, until he is no longer allergic!  (I took allergy shots for years, and yes, they work!)

I’m excited by this, but I decided to wait (for now).  Mr. Charm is going to start speech therapy next week, and I think it will be better to wait until he’s a little bit more verbal so he can better describe any reactions he is having before I start something like this at home.

Still – a plan!  A treatment!  Something I can DO!!!  Awe. Some.

While we were waiting for the prick test to develop, and without being asked for it, Dr. S brought me two yummy little goodies: a revised ER letter for Mr. Happy describing FPIES, how it will present, how to treat it, and with his full contact information on the back, and a prescription for compounded Ondansetron, aka Zofran.  This particular drug is the one that is typically given to FPIES kiddos when they are puking their guts up from a reaction in the ER.  It helps stop the vomiting.

Dr. S thought that, since we live so far from, well, everything, it would be a good thing for us to have around.

LOVE THAT MAN!!!

I then asked him if he had any suggestions for pain relievers we could offer Mr. Happy, since ibuprofen and acetaminophen are currently out, and he suggested Doan’s and Trilisate.  I’d never heard of either of those, but my Mom and the Geek’s Dad had heard of Doan’s; apparently it’s a very old OTC pain reliever that fell ‘out of fashion’ some years ago.

Doan’s is magnesium salicylate, which is basically aspirin, so I’m a little confused about that.  I thought you weren’t supposed to give children aspirin.  A tad more investigation is in order.

Trilisate is a choline salicylate/magnesium salicylate, which, same as Doan’s.  Need to look into it some more.

But, hey!  Options!!

Then Dr. S said something REALLY interesting!!!  (Actually, in all fairness, Dr. G sort of mentioned it, but Dr. S really drove the point home.)

He asked if I was SURE that Mr. Happy couldn’t tolerate Neocate and Elecare.  I had to tell him “Sure, I mean, he reacted to them.”

Then he said something SO obvious, SO totally plain to see that I STILL feel like slapping my own head and saying “Duh! Idiot!”

What could he have said that would make me feel SO obtuse?

Well, how about pointing out something I’ve said before: when an FPIES kid is reacting to something, and you introduce something new  to their system, they’ll often react to it just because their body is already reacting.  

Stay with me, now…

When we first gave Mr. Happy Neocate, what was he doing?

He was laying in a hospital bed, barely over a MAJOR reaction to who-knows-what.

When we first gave Mr. Happy Elecare, what was he doing?

Showing chronic reaction symptoms to the Neocate!

Which, as the good doctor made plain, he might NOT really have a problem with, but was simply reacting to because his body was ALREADY reacting to ‘something unknown’ in the hospital!!

So, we have formula trials in our future!!!

Whew!  I have over 350 ounces of pumped breastmilk in the freezer at home, and will have at least another 100-200 ounces before I return to work, but I honestly am worried that that will not be enough to sustain him when I’m flying.  So the idea that he might, just might,  be able to handle the formula is a HUGE relief to me!

Dr. S even kindly gave us two cans of EACH formula to take home to trial.

LOVE THAT MAN!!!

Then he ordered a current RAST to be performed on Mr. Charm, so we had to get blood drawn for him as well.  This was no problem.  As I said earlier, Mr. Charm takes after me and is easy to draw blood from.

Dr. S wants a re-check with the boys in 6 months, and even KNOWING that he is our “new” allergist, our “point man” (so to speak), he said he’d be totally fine with us having our follow-up be with our allergist back home so we don’t have to travel again.  SO thoughtful!

__________

After meeting with Dr. S, all we could do was collect samples for the next week until our appointment with the nutritionist.  Read about it (if you can handle it!) tomorrow!

The Blood Draw (for our New Team)

 
2 Comments

We left Dr. G’s office and the grandparents took Mr. Charm to get some lunch while I took Mr. Happy for his blood draw.

Poor little guy had 16mL of blood drawn!  Ouch!

He really does have tough veins to draw from.  It’s a new experience for me: I’m basically a vampire’s dream, and Mr. Charm takes after me.  Wave a needle in our direction and you get blood!

Mr. Happy, on the other hand, is built to keep his blood right where it belongs, thankyouverymuch.

I honestly thought, after the last two blood draw debacles, that the first was incompetence and the second was just bad luck.  Now I see it’s just his physiology.

Our phlebotomist was so sweet and gentle, and after one failed attempt in the arm he stopped and pulled out the ‘big guns’: heating packs for Mr. Happy’s hands.

You wanna piece a me?

You wanna piece a me?

He looked like he was about to go boxing!

They were a handy chew toy for a while, and when our tech thought Mr. Happy had dilated enough, he gave it another shot.

This time, it worked!

It took 4 tubes to get all the blood necessary to run the tests Dr. G had ordered.  Mr. Happy was quite hysterical by the time it was all over with.  Honestly, I think he mainly didn’t like being restrained more than anything.  He didn’t fight to pull his arm away during either blood draw attempt; we were holding him still more as a ‘just in case’.  He just didn’t like being held still.  (Can’t say I blame him!)

After Mr. Happy had been consoled from his traumatic blood draw, I gathered the insane amount of stool collection tubes and headed off to meet the grandparents and Mr. Charm.  (Seriously, our nice phlebotomist actually dug out a paper shopping bag with handles to put all the collection stuff in for me to carry…it was that much!)

__________

In case you hadn’t figured it out, I’m breaking this story up into sections because I know none of you has an hour to read about our experience in one day!

So tomorrow, read all about our visit with our new Super Hero/Movie Star: The Allergist!

Our New Team – The Gastroenterologist

 
2 Comments

Last Tuesday, we loaded up and drove to meet with our – hopefully – new gastroenterologist.

This doctor had been highly recommended to us, and I hoped very much that he would actually be a contributing part of my boys health care.

As with any new doctor, there was a TON of paperwork to fill out, most of it redundant.  I’ll never understand why you give your insurance information when you make the appointment, reconfirm your insurance information when they call to confirm your appointment, give them the actual insurance card when you arrive at the appointment, and then have to fill out your insurance information on the “new patient” forms.  Inefficient and ridiculous.

Still, after all the paperwork was done, we got to go back to the examining room.

Both boys were weighed and measured, then the nurse came in to get our run-down.

This took a while.

I got the distinct impression she was getting annoyed with how much information I was spewing at her.  As you probably have already figured out, brevity is NOT my strong suit!  When trying to give a new doctor the “complete picture” of my sons health issues, I’m afraid I told more than she wanted to know!

But how am I to know which small detail of their story might be that little nugget of invaluable knowledge to help the doctor?

I don’t.  So, I told it all!  She can get over it.

Then the doctor himself came in.

Can I just say: instant warm fuzzies.

He talked with me about my kids, answered questions unflinchingly, never made me feel like a nuisance (a common occurance with my ‘old’ GI), and had an amazing manner with the kids.

Rather than re-cap the entire conversation (we were there over 2 hours, after all), I’ll answer the questions I had going in:

Q. Is there anything more than fructose malabsorption going on for Mr. Charm?
A. Well, the evidence speaks for itself.  He is doing well on a fructose-free diet, and that indicates his major problem is, simply, fructose.  If he stops doing well, then testing/procedures can be done to rule out or diagnose other conditions.

Q. Can we scope them now?  What other tests can we do that are necessary to see how they’re doing?
A. Scoping is mostly useful when they are reacting to something.  If they are not reacting, the results of the scope won’t tell us anything terribly useful for current treatment.  So scoping is not a ‘never’ option, but it is a ‘not right now’ thing.

Other tests would include the stool and blood tests they ordered:
Mr. Happy – 

  • Fecal fat, qualitative
  • Lactoferrin
  • Pancreatic Elastase, Fecal
  • Trypsin, Fecal
  • Calprotectin, Fecal
  • Occult Blood, Fecal, IA
  • Urinalysis
  • CBC with differential/platelet
  • Comp. Metabolic Panel (14)
  • Alpha-1-Antitrypsin, Ser-ua
  • Reactive Protein, Quant
  • Celiac Disease Comprehensive
  • Ferritin, Ser-ua
  • SCT
  • Inflammatory Bowel Disease-IBD
  • Iron and TIC
  • Sedimentation Rate-Westergren
  • Thyroid Cascade Profile

Mr. Charm – 

  • Fecal Fat, Qualitative
  • pH, Stool
  • Fecal Reducing Substances
  • White Blood Cells, Stool
  • Lactoferrin
  • Pancreatic Elastase, Fecal
  • Trypsin, Fecal
  • Stool culture
  • Calprotectin, Fecal
  • Occult Blood, Fecal

(Do I know what ALL of these tests are for?  Nope.  I copied it straight from the lab order sheet.  So Mama gots some learnin’ to do!)

He did say that children Mr. Charm’s age can’t do the hydrogen breath test, so scoping would have to be performed to definitively diagnose fructose malabsorption.   Again, he’s doing well on the diet, so not necessary to scope for it at this time.

Q. Is there anything more than FPIES going on with Mr. Happy?  Can we rule out other things, like EoE?
A. Again, the evidence speaks for itself.  Mr. Happy has presented with straight FPIES symptoms, and few EoE symptoms.  He also would have been on the extremely young side of things when first hospitalized for an EoE episode, so essentially, that rules out anything but FPIES as his diagnosis.

Q. What labs should we monitor at home to ensure he stays in a normal mode?
A. None.  Again, evidence speaks for itself.  It’s more important to know what his labs look like when he’s reacting than what they look like when normal.  Normal is, after all, NORMAL.  If it ain’t broke, don’t fix it. (Or test it, as the case may be!)

The doctor assured me that my boys look really healthy and really well (especially considering all that they deal with), due mostly to my efforts.  What he actually said was “Look at how good these kids look!  That’s because you’re watching them like a hawk!”

Sometimes I’m exhausted by the diligence necessary to keep the boys healthy, but then a doctor – who sees FPIES kids all the time – tells me that, basically, I’m doing the right thing and doing it well, and I know all that effort is worth it.

Other than ordering the HUGE number of tests, Dr. G didn’t do much at the appointment.  Before I could get disappointed or anxious about that, he said the Magic Words:

“Okay, so now I’d like you to meet with my nutritionist, and after you’ve seen her and Dr. S (the allergist), we’ll put our brains together and figure out what to do next.”

God. Bless. Them.

THAT was what we flew out here for!  Three FPIES brains willing to come together to make a “team”, and offer a comprehensive approach to my sons health care!

I dang near cried.

_________

Part II of our medical excursion to Atlanta will be up tomorrow…stay tuned for “The Blood Draw”!

When Mama Met The Geek

 
8 Comments

Our Wedding Cake
Yes, it was as delicious as it looks!

The only reason the Geek and I are not in one of those eHarmony commercials is because we both had our distance restriction set too low.

I was living in Houston (my hometown) and he was living where we now reside, and we both said we wanted people within 50 miles.

Silly us.

So, there we were, both on eHarmony, getting lots of matches but none that panned out, and finally both ventured on to the eHarmony message boards (which are free and open to anyone, not just eHarmony members).

I had never even seen message boards online before in my life, so it was a new experience for me.  I wandered around reading for a while (lurking, though I didn’t know the term yet) and suddenly saw a posting that really got my attention.  I thought “This person is in almost the exact same position as me!”

So I clicked on the profile and saw it was a person of the MALE variety, and of course, my interest was piqued.  I laughed a little at his profile: he was a GEEK!  A country-music-listening, Southern Baptist, D&D/WoW playing computer Geek.  (At the time, I was a “anything but country and rap” music, I’m-Methodist-and-Southern-Baptists-scare-me, night clubbing big city girl.)

Well, I always had a fondness for geeks, so I started clicking through to read other postings he had made, and after a short while realized that this Geek thought almost the exact same way as me about relationships and life!  Very exciting!

Except…he lived in another state.  I was not interested in the long-distance thing!

Still, I firmly believe that God sometimes pushes people together for a reason, even if for nothing more than a “Hang in there, sweetheart” word of encouragement.

So I sent him a message.  To paraphrase, I told him we were in a very similar situation, that he seemed like he had his head on straight and appeared to be a nice guy, and told him to hang in there – that I hoped he found someone good to be with very soon.  Then I said “BYE”.

I didn’t even hint  at wanting to speak to him again; no encouragement that this was the start of anything at all.  In fact, I didn’t want  to speak to him again – long distance and all that.

However, writing that message gave me some courage and I started posting my opinions on the message boards.  A few hours later, I decided I was done, turned off the computer and went to bed.

The next day I left for work.  When I returned home 5 days later, I saw an email from the Geek.  He basically said “thanks” for the encouragement, you seem nice, blah blah blah…I don’t know if I want a long distance relationship but friends are always a good thing to have…yada yada yada.  I’m reading this and thinking “Who said I wanted a relationship, bub?”

I clicked to my next email and it was from him, too, sent an hour after the first one: “I’ve read some of the things you’ve written and I really think we have a lot in common.  If you’d like to talk, here’s my number.”

Well, there you go.  I sent him a personal email: “I don’t call men.  If you want to talk with me, here’s my number.”

He called 5 minutes later.  That phone call lasted 8 hours.

We met in person a month later, having spent the better part of every waking moment since that first call on the phone.  Thank God, we both looked at each other and thought “S/He’s not a freak!”  After a day together, it was almost like we’d always been together.

I knew he was going to propose a month later, but some random events occurred that caused the proposal to be delayed to 2.5 months after we met in person.  (Thanks, Hurricane Ike!)  I said Yes, and we started talking Vegas, baby!

We eventually were talked into having a traditional wedding, so we didn’t get married until almost 7 months after that first phone call.

Today is our 4 year wedding anniversary.  I look at where we are in life now and am amazed that so much has happened in 4 years.  I’m amazed that this marriage, still technically a relatively new marriage, is so strong and solid; especially considering the lack of together time and the multitude of major stresses we’ve endured!

I lived a full life before I met my husband.  I had a career, I had lived in interesting places and traveled around the world, I owned my own house, had a 401K, friends, a social life and was very active in a charity organization.

But I look at the years before that fateful phone call and wonder WHAT I was doing with my life!  

In these last four years, I feel like I’ve finally “come into my own”, so to speak.  I feel more fully like the self I always was trying to become.

And a HUGE part of that is directly because of the Geek.  

He met me, he liked me, he accepted me exactly how I was, and quickly grew to love me.

Even today, I’ve never met anyone who truly “gets” me the way he does, nor have I ever met anyone who has never urged me to change something about myself.  (Parents don’t count!)

Because of his acceptance, and his willingness to accept me warts and all, I actually have  changed.  

I have become more patient, more responsible, more level-headed in my relationships, more open, and I was finally, finally  able to get over my fear of setting boundaries and telling someone when I was hurt.

I became a better person because of his love, because of him.  

I know I could never have made it through the last two and a half years of our boys medical issues without him; his utter nonchalant confidence in my ability to handle things, his absolute 100% committal to doing whatever it takes to keep the boys healthy, his easy prioritization of what matters and what doesn’t, and his enduring, unpressured patience with knowing that right now, he must let me give 85% or more of myself to the boys but that one day, they’ll be healthy enough that he can rise in the ranking again to being the bigger priority in my life…all have made it possible for me to grapple with the uncertainty of our medical world while having a steady rock to stand on.

He’s an amazing man, my husband.  I’m so happy, proud, and amazed that I’m married to the best person I know.  

Happy Anniversary, Babe.  I love you!

A Good Decision

 
Leave a comment

Yesterday we had our first appointments with the Atlanta specialists. Coming here was a good decision.

I have so much to say about how it went and what I learned, but I don’t have a computer and it is far too much to type on an iPhone.  So I’ll just say that I’m glad we finally have knowledgable doctors on our team, and that I can’t wait to tell you all about it!

but, that might be a while. We were referred to the nutritionist that these doctors work with, and she can’t see us until next Tuesday.  So we will spend a week hanging out in Atlanta, see her, and then head home.

But don’t worry – I have plenty to keep me occupied:

testing_supplies

That would be the many vials that I must fill with stool samples for each of my sons. Fun, fun.

Still, SO GLAD WE CAME!!

 

 

The Naked Finger

 
Leave a comment

Here’s a side effect of losing 60 pounds: my wedding rings no longer fit. 

They are so loose, in fact, that if I gesture ‘loudly’ with my left hand, they fly off and bounce across the room!

Don't mind the "she needs a manicure" state of my hands, please. THIS is my wedding band set.

Don’t mind the “she needs a manicure” state of my hands, please.
THIS is my wedding band set.

I don’t want to re-size them, yet, because after this elimination diet is over with for Mr. Happy, my weight might change again.  Honestly, I freaking LOVE the way I look these days and I will do everything in my power to not return to my previous girth, but who knows what will happen to my body as I add foods back in?  

My engagement ring is a family ring from the Geek’s family, and while I don’t have a problem with re-sizing it once, frequent re-sizings could mess with the stability of the metal.  Very bad.

So I want to wait until my weight has stabilized, probably 6 or so months after I’ve finished this diet.

In the meantime, though, I’ve been PARANOID that I’m going to lose my rings.

I went to several jewelry stores, and they gave me some song and dance about how the metal re-sizing attachments are expensive and “blah blah blah Go to Claire’s – they have temporary adjustment bands you can put on your ring.”

So, I did.  Bought a whole package of them.  They suck.  I went through three of them in just over a week – they kept falling off or breaking!

Eventually I got out a small crochet hook and some thread and crocheted back and forth across the band repeatedly until it was a nice, thick chunk of fiber.  And it worked pretty well at keeping both rings from flying off my hand.

My "crochet fix" for the sizing problem.

My “crochet fix” for the sizing problem.

But I was still paranoid.  All I needed to do was catch that thread on something sharp and it would start unraveling.  Next thing I would know, I’d look down at a naked finger.

Finally, I asked the Geek if he would be bothered if I went to a pawn shop and tried to find some cheap ring to wear to replace my set.  I just can’t go ring-less.  It feels weird!  He said it was a good idea, actually, and two weeks ago I had the chance to stop by a pawn shop. (Yes, I know I’ve mentioned money is tight.  I was hoping to find a plain band of some kind, which I’ve seen for under $50 at pawn shops before.  I planned to take it out of our grocery budget for the month!)

I just love pawn shops, by the way.  I have some gorgeous jewelry I bought as a single gal from pawn shops for a pittance compared to what it would have cost at a jewelry store.  Those days are over!  (for now – bwahahaha)

Anyway, they had some beautiful rings, and when I told the man what I wanted to do he insisted I would save a ton of money if I just called his friend, a retired jeweler who still does work out of his home.  His friend, he said, would be happy to put on one of the metal re-sizing bands for me for a good price.

And that was basically all he was willing to do.  I could have pushed the issue, but I didn’t.  (I saw the price tag on one of the smaller rings in his cabinet, and it was well outside my meager budget.)  So, I left.  And with two kids in tow?  I didn’t feel like visiting another pawn shop, hoping for a good deal.

I also didn’t feel like calling his friend.  Why would I want to go to a complete strangers house and leave my wedding ring set with him?  Besides, it was just one more thing.  I wanted a quick and easy fix; I thought a pawn shop would suffice.

As I drove off, I had a “eureka!” moment: who says I need a “real” ring, anyway?  It’s just temporary, right?  Eventually my weight will even out and I can get my ACTUAL rings re-sized permanently (and before that I’ll be back at work and might have enough money to go buy myself a “real” ring at a reasonable price).

Until either of those things happen, though, why not get some big, honkin’ costume jewelry ring at Dillards?

So, off we went to the mall.

Our mall has two Dillards: one for men, one for women.  Don’t ask me why.  It’s irritating.  Because I always go to the wrong one.

Sure enough, I went into the men’s Dillards.  It was cold outside, so we went through the mall to get to the women’s Dillards.

On the way, we passed The Jewelry Corner.  (That’s what I call it.)  The intersection where three jewelry stores face each other.  As I walked past one, I noticed a display on top of the cabinets: $50 boxed sets – and there were rings!

I immediately ground to a halt (yes, I’m quite crow-like with things that go shiny!) and saw a lovely ruby ring with a matching ruby necklace.  The nice man showed it to me, and oh, was I ever tempted.  It needed to be re-sized, but still…

He sized my finger for me.  I’ve gone from a 7.5 to a 6 in ring size.  Then he suggested I try something in a white sapphire, since I’m looking to temporarily replace a wedding ring set.  And he showed me a gorgeous ring with 3 princess cut white sapphires…and it was only $99!

Thoughts of how to cut the gas budget and grocery budget even more flitted through my head.  This ring was GORGEOUS.

But before my crow-like self could get carried away, I did what any self-respecting, independent woman would do:  I told him I needed to ask my husband!  (I find that to be a very effective way to get out of doing something, now that I can’t blame parents any more!)

I didn’t actually need to talk to the Geek about it; I needed to buy myself time to think it over.  And I did.  As the kids and I walked on to Dillards, I decided if Dillards didn’t have anything suitable, I’d go back and buy the sapphire ring (and figure out how to shuffle money later).  But if they did…

And guess what?  They did!  

My cheap-o, "solves the problem for now" wedding band set!

My cheap-o, “solves the problem for now” wedding band set!

Not too bad for $12, right?

Can I get credit for self-restraint, here?

And I’m so happy I won’t lose my REAL rings now!

Anyone else on an elimination diet have this problem?  What did you do?

Baltic Amber

  , ,
6 Comments

Mr. Happy is now in the unpleasant position of not having any pain relieving medicines he can take.

Ibuprofen was a major fail; acetaminophen might  eventually pass, but it showed fail signs when we tried it a few weeks ago.

Our compounding pharmacists are waiting to hear back from their suppliers about the derivatives of the ingredients they would use to make safe suppositories for Mr. Happy.

While they work on that, I took the advice of the other Mama’s on the FPIES boards and ordered a Baltic Amber necklace for Mr. Happy.

According to the I Love Cloth Diapers Blog, the effective pain relieving properties of amber “…only applies to amber (fossilized tree sap) collected from the area around the Baltic Sea.  Other types of amber do not have these properties.  Baltic amber secretes minute amounts of succinic acid.  When absorbed through the skin into the bloodstream, succinic acid is a slow, mild, but effective, pain reliever.  It is considered safe for all ages, including babies, which is why Europeans have reportedly used it for centuries to relieve teething pain in babies.  This is also why baltic amber necklaces are not for chewing: babies only need to wear the amber against the skin for it to be effective.”

Several of the Mama’s on the FPIES board swore by these necklaces, but you know how it is: label something an “old wive’s tale” and suddenly you doubt whether it is true or just some comforting falsehood.  (Blame the 1950’s and the ‘Better Living Through Chemistry’ campaign for disbelieving our mothers, despite the fact that science has since proven so many old wive’s tales true!)

But at some point you just decide that you’ll try anything, because nothing else has worked and what do you have to lose?

So, I ordered the necklace.

I went with one of the stores recommended to me, Inspired by Finn.  It arrived on Thursday, and we wrapped it around Mr. Happy’s ankle and covered it with a sock for bedtime.

photo-1

 

image-2

For the first time in I-don’t-know-how-long, he only woke up three times in the middle of the night, instead of every 1 – 1.5 hours.

Friday, we kept it in place around his leg using a leg warmer.  He was pretty normal that day, only fussing when tired or hungry.

Friday night?  Again, only woke up twice in the middle of the night to nurse.

Saturday we spent all day on airplanes, traveling to Atlanta.  He was a dream traveler!  When we got here, he managed to kick his sock – and the necklace – off.  I decided “Ahn!  He’s fine!  He’ll be okay without it.” and left it off.

Within two hours his cheeks were bright red and he was fussing up a storm.

He fought going to bed that night, too, until I grabbed the necklace and put it on his leg.

Within 30 minutes, he was asleep – and only woke twice in the night!

Old European Wives?  I bow to your wisdom.  We have a winner!

I’m still a tad paranoid about having a necklace with beads (read: choking hazard) around my son, but I keep a close eye on his necklace, sock and leg warmer throughout the day.  Honestly, zippered footie pajamas make me relax the most.

I’ll keep a constant watch on his little medical anklet, though, if it relieves his pain and allows him to be the happy, easy-going baby I know he truly is.  It’s such a relief to know my little bug isn’t in pain!

Have any of you tried a Baltic Amber necklace?  Did it work for you?

Georgia Bound

 
2 Comments

Back in December, I mentioned that we were going to Travel For Medical Care.  Next Tuesday is our Big Day.  We will see a new GI and a new Allergist on Tuesday, and hopefully get an appointment with the nutritionist they both use.

We picked doctors in Atlanta, mostly because it seems there are a handful of “Go-To” places for FPIES experts (CHOP in Pennsylvania, these doctors in Atlanta, and – I think – National Jewish in Denver), and we were told that the doctors in Atlanta work really cohesively as a team to offer a more blanket care management plan.

As a side bonus, the Geek’s Dad lives near Atlanta, so, visit Grandpa and avoid hotels and car rentals, too!

In anticipation of these appointments, I went through the arduous task of contacting every clinic, doctor, and hospital the kiddos have ever visited to request their medical records.  It seemed wise to have a copy of their records for myself, anyway, and this just lit a fire under the task.

Want to see what the medical records for two such small boys look like?

That's just sad.

That’s just sad.

Yeah.  And Mr. Happy’s is the THICKER black notebook.  The box is the double copies I had made for the new doctors; obviously, to get on the plane, I’ll be packaging those up in envelopes.

I’ve been trying to sort through exactly what I hope is done and what I hope to learn from these doctors, so I’ll lay it out here for two reasons: one, so I can keep track of this part of their story easier and two, so that in case I’ve forgotten something, one of you can leave a comment to remind me!

Here goes…

For Mr. Charm:

  • Is there anything MORE than fructose malabsorption going on?
  • Allergy test for rye and peanut, plus anything else they think might be necessary.
  • Scope him/test him however necessary.  I’ve been told to ask for tests for malabsorption markers like alpha1 anti-tripsyn, calprotectin, stool reducing substances, fats, etc. and inflammatory markers like leukocytes, eosinophils/neutrophils, etc.  Also, I was told to ask the benefits of scoping vs. breath hydrogen tests for dissacharide deficiency.
  • What does his diet need supplementation for, if anything.
  • If he does need vitamin supplementation, what is a good, fructose-free vitamin we could use for him?
  • Do we need stool kits, and if so, what do we look for?

For Mr. Happy:

  • Is there anything MORE than FPIES and IgE to dairy going on?  Rule out any overlapping conditions like EoE (eosinophilic esophagitis), for example.
  • Allergy test him for anything else they think necessary.
  • Scope/test for the same things I ask them to test Mr. Charm for.
  • Ask for stool kits to have on hand in case of reactionary stool, and what we should test for in those instances.
  • Find out which blood tests to get during a reaction (like in the ER) and get a revised ER plan/letter specific to Mr. Happy’s needs.
  • Find out which labs to monitor here at home to ensure he stays in a normal range.
  • Any suggestions for pain relievers we can use.
  • Plan of action for food trials: what foods, in what order, and a definitive rule-book for calling safe/unsafe (i.e., seeing slow build reactions, stop and wait 3 days, then re-try or just stop altogether).
  • Find out what his poop SHOULD look like!
  • Ask about how to handle hospital visits (God forbid) with a child sensitive to corn (IV saline has corn-derived ingredients).

For Both Boys:

  • Basically, I want to determine where they are at currently (health-wise), how to get them to the best health possible, and what to look for in case they backslide.
  • I’d like to rule out the gray areas and have some definitive answers: “yes, all Mr. Happy is dealing with is FPIES and IgE to dairy”, for example.
  • I’d like a game plan in place for how we move forward to keep our boys healthy and help them thrive.

I’ll be honest, I’m not looking forward to watching my boys undergo invasive medical procedures.  But I’m going to fight like mad to have them done!  I hate the thought of my kiddos in pain/discomfort, but this would be a temporary, short-term agony to help offset long-term, constant unpleasantness.  It needs to be done.

Since we’re an airline family, I don’t know exactly when we’re flying out.  Sometime this weekend; I don’t want to risk missing the appointments because we couldn’t get on the flights Monday!  And I don’t know how long we’ll be gone.  If the doctors DO want to do testing, and they want it done in Atlanta before we return home, well, we could be there a week or more.  On the flip side, we could be flying home on Wednesday!

So, I don’t know how my posting here is going to go over the next week or so.  I’ll post if I can; if not, you know where I’ll be and what I’ll be doing.  (I’m a little jealous of the Geek.  He gets at least 4 days alone at home – I’ve only had a few hours of alone at home time over the last 2.5 years.  <though honestly I don’t know what I’d do with myself if I was at home alone anymore – shh, don’t tell the Geek!>)

Now to pack…ugh.  I hate this part!  You’d think I’d be better at it, what with being a Flight Attendant, and all.  But packing always stresses me out.

Have a great weekend, and I hope I have wonderful news to share next week!

Food Protocols

 
2 Comments

Mr. Happy is just racing along the floor these days.

Mr. Charm is happily eating some of his safe foods – foods which are NOT safe for Mr. Happy.  He is also 2 and has no real awareness of crumbs.

Mama is going NUTS.

I’m going to change my name to Cinderella because I spend so much time every day sweeping and vacuuming the floors!

As I usually do when faced with frustrating situations, I looked at this and thought “How can I work smarter, not harder?”

Well, the answer is: BABY GATES.

Mr. Charm broke us in very well.  Our house is now almost entirely ‘baby-proof’ (if not toddler-proof!).  So we had packed away the baby gates and thrown them up in the attic last summer; they weren’t needed any longer.

We got them down weekend before last and installed them.

Our kitchen and dining room are sort of attached, and they are smack dab in the middle of the house.  So we set up a gate across the wide entryway from the dining room to the living room.

When we're eating, we close off the gates to the living room. No entry or exit until the food is eaten, put away, table is wiped, and floors are swept. And Mr. Happy cannot crawl in the kitchen and dining room when the gate is up.

When we’re eating, we close off the gates to the living room. No entry or exit until the food is eaten, put away, table is wiped, and floors are swept. And Mr. Happy cannot crawl in the kitchen and dining room when the gate is up.

When the gates are open, the house still has a good flow to it and Mr. Happy can crawl anywhere. But it all comes to a grinding halt when food comes out.

When the gates are open, the house still has a good flow to it and Mr. Happy can crawl anywhere. But it all comes to a grinding halt when food comes out.

The kitchen and dining room are now “crawl-free” zones when food is out.

The rest of the house is now a “food-free” zone at all times.

I hope it works.  I’m tired of panicking every time I see a crumb.  And I’m REALLY tired of swiping food out of Mr. Happy’s mouth.  No matter how many times I sweep, the child is an absolute MAGNET for dropped food!

Oh, and we had to hang the broom up high on the wall.  Mr. Happy kept – get this – eating the bristles!

For starters – ew.  Secondly, I sweep up everything  with that broom.  God only knows what contamination he’s consuming by eating the broom!

Strange child.

This better work.  I hate the idea that I put more holes in my wall for nothing.  Not to mention I really need Mr. Happy at baseline.

How do you keep your allergic child safe from stray food?