Thursday, November 6, 2014

Kindy, trackout, green bees, and sight words

Nov 6, 2014
1 year and 166 days
2400mg (maintenance dose)

We've made it through the first quarter and the first track outs.  Everyone has stayed safe, we've built a rapport with the teacher, and been on one field trip.

I may fall over now.  :)  It's amazing the time, emails, effort, and prayers that went into those two simple little sentences.  We've been through a lot.  Getting the allergy plan in place was a lot of wrecked nerves, gentle pushes, and repeated conversations.  We've been blessed with a teacher that gets it and emails us to ask about brought in snacks (unexpected).  There've been some ups and downs.  A parent said they were bringing in a birthday treat but would never respond what it was going to be.  So... do you send a safe cupcake and hope they didn't bring fruit?  We guessed right and sent a cupcake, but your kid is either just fine, or the envy of the class, or the only one without a sweet treat.  I would prefer better than 1 in 3 odds of doing it right ;)  I would prefer everyone stop bringing in food, but it was made clear to me they wouldn't restrict what came into the room by the nurse and the assistant principal.   I am grateful to his wonderful teacher that tries to keep us all updated.  I know there are three allergy kiddos in his class.  One is us (tree nut), one is peanut, and I'm not sure on the other one yet.   But we make absolutely sure never to send any peanut products at all.  I know he's usually seated with the other two kids (that's how we figured out who they were).

Track out camps were a bit nerve wracking but we made it!  Camp 1 we emailed with details about his first two reactions and said absolutely no food sharing at all, and no outside food that wasn't a piece of fruit.  They agreed immediately and went into a crazy level of detail with forms that I had to fax to the allergist and medication agreements.  I saw their schedule later (accidentally tucked into his papers that came home one day), and was AMAZED to see the # of kids that had allergies and what they were.  But they had low ratios of kids to adults, he loved it, and they had clearly made sure every teacher for every segment of the day knew which kids had what allergies.   And they did it quietly, gently.  I may be in love with this camp.  They teach them musical instruments, art, play outside, and all sorts of other fun stuff.  Can I get to go here?  It was nice to find a place we can trust on the first try!  (We knew other allergy parents that had gone there and were very happy so we had some inside info).

Week two we took a vacation to the house of mouse (Disney) and had some great food experiences and some not so great.  Never anything that put us at risk, but Disney is famous for accommodating allergies and at least twice I didn't feel that was really the case.  But for a whole week of eating out that's pretty amazing. :)  We will email the special diets program and let them know about the good and the bad, but we had a blast.  We had our first ice cream parlor experience (that went over quite well!), and another time got frozen apple juice and safe cinnamon buns.  Lots of research and stalking of boards on facebook (Disney Chefs Rock Food Allergies is the primary one I used).  Tons of good info and nuggets that only matter to the food allergy community, but that can really make the trip a lot more fun and inclusive.

Week three both kiddos were at a sports camp - their policies were so ... laid back it was stunning compared to camp 1.  We talked to the coaches at length and they had all been trained on epinephrine and apparently deal with this pretty regularly.  I did figure out after day one they thought he was also allergic to peanuts and he more or less ate lunch by himself.  I asked them not to do that, but asked that he sit with his sister with other kids.  I don't know if he chose that on day one or if they did.  He didn't seem to be upset about it so we didn't make a big deal about it, but I did tell them to be careful not to exclude him.  That word seemed to make it click.  He loved it and was totally worn out at the end of each day.  He got a stomach bug the end of the week which wasn't so fun.  I'll be careful with these guys but they clearly train their coaches, so it was good.   Active stuff is great :)

Stomach bug was not so fun.  Poor little man is a trooper though.  I finally had to him in to get something for the nausea so we didn't mess up our OIT.  They took one look at mr totally limp and pathetic (he didn't MOVE for the whole appointment) and gave him chewable zofran tablets.  As soon as we got his stomach to stop heaving he recovered quickly and was able to keep down his doses.  By day 2 he was asking for guacamole, so I figured he was improving fast.  We avoided dairy for a few days and all was well.

Halloween went off well - we dumped (we thought!) all the unsafe candy before they came in and sent it back out.  We also participated in the Teal Pumpkin Project and had toys and non-food items in a separate bowl available.  The kids liked painting the pumpkin teal and REALLY liked picking out items for that bowl at the store.   One scare was the morning after Halloween, the kids were up before we were and discussed eating candy without us and decided that was a bad idea.  I praised them later for that, especially when I realized the candy they wanted to eat was from a goody bag (and hadn't been screened yet!)  I said several prayers when I read the labels and found TWO items that would have appeared safe (smartie type monster shaped candies) that said processed on a line with walnuts. When I got my heart rate back under control, we had a long talk about why they did the right thing, and showed them the label, then promptly trashed the candy.  Hooray for them doing the smart choice!

Aside from the OIT (which he doesn't really understand yet), his world revolves around play, sight words, getting green behavior bumblebees at school, trading in said bees for prizes, and beginning math.   I swear we were learning colors in K?  But he's making it.  Couldn't be more proud of this tough little fellow.  Honestly I might be even more proud of his big sister for understanding far better than he does the risks that he faces.  She's a bit of a nervous nellie, but she loves him fiercely and watches out for him. When she's not busy torturing him or telling him how to do everything of course!

Thanks to all the friends, neighbors, family, and allergy peeps that have cheered and prayed for us on this road.  It's long and slow and fraught with nerves, but it's been great to be loved along the way.  Onward!  Maybe one day we'll get into that clinical trial and speed up this process.  I can dream anyway.

Free book! - Nov 6 and 7 - free kindle kids book  about food allergies.

Fierce Monster and Max from "Where the Wild Things Are"


Friday, June 20, 2014

school days are almost here!

June 20, 2014
1 year! (and 27 days!)

It's been a long slow process but it's neat to look back and realize we've been at OIT (oral immunotherapy) a full year with no reactions.  That's pretty amazing!  The little man is doing fine and excited that school is about a month away.  Crazy.

The allergy planning at school is complete!  Hooray!!! There are papers, on file, signed, in the office.  It took a lot of emails, a lot of patience, and several face to face meetings, but it's done.  The main points (see previous post):

  • Subs are trained on epinephrine, but only at their initial hiring.  This is frustrating, but it's better than never.
  • The bus drivers will be trained (as a group), by the nurse before school starts
  • We will have at least 4 epinephrine devices (for us that's the Auvi-Q Jr) at school.  The "red bag" that follows him class to class (1 or 2), in the office(2), and …)
  • He will be allowed to wear his spibelt with an Auvi-Q(1)!  (for those in the allergy community this means he can self-carry, and was a BIG concern for us).  This one is HUGE.
  • After much discussion, he can have his epi on the bus, and it doesn't have to go into his backpack.  He can continue to wear it in his spibelt under his shirt.  

This now covers the concerns about the bus, the bus driver, most of the concerns about substitute teachers, access to epinephrine by a bunch of 5 year olds (if it's in his backpack), and transit to preschool aftercare.  Patience and determination (and honestly just asking calm questions!) really paid off.  The allergist was not going to help us push for an epi on him (to cover the bus or red bag missing scenario), but we feel much better that we got this in his plan and he will have access to his meds on the bus/all the time.  May he never ever need them!

I am sure he will be looked after at school.  But it's really hard to leave a nut free day care and put him in a community setting where we will never meet some of the folks that take care of him.  We have done everything we can to make sure that his meds are within easy reach and that he knows what to do.  The nurse will make sure the staff knows what to do.  I have no doubt he will be loved at school, he is in an awesome place where he loves with abandon, with his whole body, his whole heart.  He hugs his teachers goodbye every day, he lights up when he sees us, he runs to us when we get to preschool and jumps into our arms.  He has an infectious smile, a belly laugh, is surprisingly insightful and observant.  Kids… they are amazing.  He also has a wicked smart big sister to chase after and learn from.  She will do anything to keep him safe (and maybe torture him a little in the background).  They are worth every tantrum, every fear, ever sadness over their hurts.  It's a big step to turn them loose.  We will have to do it in ever increasing stages.  He's ready.

Not sure mom is :)

Wednesday, May 14, 2014

Topping out on walnut for a while...

May 14, 2014
Day 355 (Almost a year!)

Well we hit the top dose today!  Woohoo!  2400mg of walnut flour.  We'll stay at this dose for a year.  I asked the allergist why it wasn't higher, and apparently this is the walnut protein equivalent of several nuts.  That was a shock, I had no idea it wasn't a one for one weight calculation.  (I thought we were still at less than one nut).  Everything seemed fine, we saw the somewhat normal redness right under his eyes, but no symptoms.  That didn't last long (also normal for him).  So we'll go in once a month now for a dose in office/monitoring/catch up.  After that year we will have his IgE levels retested and see if they've dropped enough to move on to the next nut.

That was a bit unexpected, but we've been so busy talking about school readiness that we missed that we were so close to this milestone :)

On that note - we've met with the elementary school nurse and assistant principal to discuss how we keep our little guy safe starting in two months (yikes!)  WCPSS (Wake County) has an allergy plan and an asthma plan that looks a bit like a choose your own adventure book (where you choose how you want them to handle certain situations like the lunch table and outside food).  Some of the choices were really non choices, and feel a little exclusive, but I get how a standard is much easier to implement.  (For instance he has to be able to either make his own food choices exclusive of an adult's input, or he can only eat food brought from home with no exceptions).  That's not a choice - he can't read labels, doesn't know all the places nuts can hide, and he's really too young to say no to all the tempting possibilities that will come up at school.  So only home food - always.  The bad part about that is the social exclusion from every party, event, candy handout, etc… for the whole year.  We're going to try to be the room parents so that we can offer to buy safe food/snacks for parties, but things will come up. We can have ice cream or things like frozen cupcakes stored at school and a snack box for the teacher to use in case of those surprise events, but he'll be different every time unless we bring in the food for the class.  So far he hasn't quite realized that he's going to be that kid.  It's time to start talking about it though, he has to get that he can't cheat the odds and take a bite of something.  We'd really prefer never to have to visit the ER again with him struggling to breathe.  At least all of the permanent staff and bus drivers are trained to use epinephrine. (yay!)  It also sounds like he can have an epi in room with him that will follow him around the school (they call this the red bag and in lower grades it follows the class everywhere - diabetes meds, epis, inhalers only).

The biggest points of contention so far (and they didn't really feel like an argument just things we have to sort out) are the school bus (does he self-carry on the bus and where is it kept), and what happens if there is a substitute (they are not epi-trained, anaphylaxis trained).  The bus I think we can sort out with them (and with the after care at the preschool).  They are willing for him to have it on him and that's a big deal.   Everyone likes to say the kids aren't allowed to eat on the bus.  Well, that's irrelevant since we are all well aware that they DO eat on the bus.  Some of them are on the bus for over an hour, we get it.  But we need for there to be an epi available.  Who knows what might be smeared on a seat where he puts his hands, or if he might give in and take a bite of something tempting?  The school wants it in his backpack front pocket, but that's too accessible to everyone IMHO.  We want it on his body (in a spi-belt).  That's what he's been wearing for months (with a trainer epinephrine injector with no needle).  It's under his shirt, small, and harder for another kid to get their hands on it.  The substitute issue is interesting.  For his Kindy year it's probably moot (there is an aide assigned to the class full time too, and the chance of them both being out is very low).  This is something the schools need to figure out.  Subs are not "normal" school employees, there are over 1000 in this county, and they are not epi trained (at least not unless you get lucky).  Leaving him in a class with a sub who doesn't know how to recognize or treat anaphylaxis at this age is not an option we're ok with.  The school didn't really have a good answer but said they'd look into it.   If they can't figure out something we may be picking him up if we find out they have a sub (and we may be asking for it in writing that they call us if his teacher and aide are both out).  We're willing to train a sub, but they aren't sure it will be allowed.  Ah the frustrations of HIPPA/FERPA, government policies, and ill thought out scenarios.

Other big news - for the time being we got denied for the trial at Stanford we were hoping to get into - but we're in their system and are watching (ok maybe stalking a little) as they continue to grow that research into Xolair and mass desensitizations.  Very very interesting stuff!

We did an allergy friendly easter egg hunt this year (no food) and the eldest kiddo at first was not happy until she realized that she was going to get a bunch of little toys instead of candy.  :)  That went well - and it was good to meet some other parents who know what it's like to have to stalk your kiddo at an egg hunt where there might be suspect candy.  We also met another little fellow at the allergist today doing peanut desensitization that I'm sure we'll be seeing every month since we're on the same schedule.

Any friends / fellow parents out there who are looking into this stuff, check out NC FACES on facebook or ping me and I'll get you on the group.  It is awesome to have a place to talk about this part of our world (when Enjoy Life Foods go on sale on zulily or amazon, what baseball games are nut free, how to navigate the local school system, 504 plans, etc…)

Thanks for listening - this one is getting long so I'll stop here and do another update soon!  We are so lucky to have friends and family that help us on this road.  Thank you all, you are blessings to all of us!

Thursday, March 20, 2014

Warning… science incoming!

March 20, 2014
Day 300
Dose 1500mg/day

300.  Sounds like it should be a milestone doesn't it?  It is!  We increased the dose yesterday to 1500mg and got some puffy eyes to show for it, but it faded a little at a time and no other symptoms cropped up.  The nurse and I kept a serious watch on him in the hours following the dose, but he's ok.  Nothing like a little mom anxiety to put your workday in perspective!   We also discovered this week that Chipotle uses no nuts in ANYTHING.  Boy that was kind of fun - told the kids to order anything they want on the menu with no reservations!  Very allergy friendly menu for most folks (not for soy, wheat).

So there's your minor update on our oral immunotherapy… now for the science geek out and hopeful research updates:

I've referred several times to the Stanford trials of OIT with multiple food allergens and specifically to the shortened OIT in combination with Xolair.  This supposedly is opening up to 4 other places in the US (although I can't officially find out where, I would imagine Arkansas Childrens, Hopkins, and UNC to be three of them… )   If we could desensitize more folks in far less time (and to up to 5 allergens at once), well wow.  It's frustrating as the news articles hint at things that you can't find on the Stanford or any other university websites, but I know it's all in progress research.  We would be thrilled if the trials were expanded into NC.  Heck we'd consider temporary relocation if we thought we could get into them even in California.  

Stanford blog post about allergy research (talks about the phase 2 Blinded study potential openings and potential future DNA tests that might show if OIT maintenance can be discontinued safely.  (It appears that for peanut allergy that is "cured" there are DNA changes - wow a safety screen test?!)

Presentation by Dr. Burks (formerly Duke, now UNC) on the state of food allergy research 12/18/2013.  This covers lots of the ongoing research for OIT, SLIT (sublingual immunotherapy), the Chinese herbal treatments (FAHF-2), Xolair (omalizumab) combined with OIT for milk allergy and for peanut, baked egg and baked milk trials, 

Blog post about FAHF-2 in combination with OIT (instead of Xolair) - this a great update about not only FAHF-2, but Stanford and Mt. Sinai research collaboration.

Perhaps I should consider a new career - I'm turning into a different kind of geek.  If anyone is as excited as I am about such things, send me a message and I'll show you lots of places to watch for updates.  Or maybe order a shirt from thinkgeek:

Until we meet again...

Monday, March 10, 2014

More hope for OIT in less time?

Day 290 - Current dose is 1200mg.

For those of us stalking the Stanford studies, there have been some really awesome articles in the news about their progress in the last few weeks.

Let me back up and explain a few things.  OIT == Oral Immunotherapy, essentially you orally ingest your known allergen (food) on a daily basis and very slowly up the dose in an allergist's office.  (So you increase the dose maybe every two weeks).  The Duke/UNC DEVIL study (peanut) is an example of this.  Some allergists will do OIT as an in office therapy, although it is currently not covered by insurance.  It's a breath of hope for those of us with multiple allergens to worry over.  Stanford's SAFAR team has been doing OIT for up to 5 allergens at a time and is pretty much the only place in the country where you can do this simultaneously right now.  When it could take years to desensitize for a single allergen at a time, this is both scary and really hope granting research.  The median time to reach maintenance doses was still long (85 weeks).

Their latest publication talks about using an anti-asthma drug (Xolair) to decrease the amount of time needed to reach maintenance doses.  They were able to do multiple allergens in the new study and reached maintenance levels at a median of 18 WEEKS!  I know it's the first stage, but man… sign us up!!!  Looks like Phase 2 trials began in February.

Science Daily
Allergy, Asthma, and Clinical Immunology Journal

So that was the exciting bit - but in other good news - Allergy Eats (app for helping rate/rank restaurants for ability to accommodate food allergies safely), has posted their list of top ranked allergy friendly chain restaurants.  I wasn't going to paste the text but we have a pretty good selection of these in our area so here you go.  We have tended to feel safer at smaller pubs and places we can get to know the staff and owners, but this is handy.
Large (over 200 units):
  • Red Robin Gourmet Burgers (4.45 rating)
  • P.F. Chang’s China Bistro (4.43 rating)
  • Chipotle Mexican Grill (4.41 rating)
  • Outback Steakhouse (4.35 rating)
  • Romano’s Macaroni Grill (4.20 rating)

Medium (50-200 units):
  • Bonefish Grill (4.43 rating)
  • Ninety Nine Restaurants (4.28 rating)
  • Mellow Mushroom (4.26 rating)
  • Uno Chicago Grill (4.24 rating)
  • Bertucci’s Brick Oven Restaurant (4.17 rating)

Small (under 50 units):
  • Burtons Grill (4.90 rating)
  • Maggiano’s Little Italy (4.73 rating)
  • Papa Razzi (4.68 rating)
  • Legal Sea Foods (4.67 rating)
  • Not Your Average Joe’s (4.66 rating)
Until next time…

Wednesday, February 19, 2014

Adventures in snow and allergies

Feb 19, 2014
Day 271

Adventures in allergies....

We've had a good run the last few weeks - no issues to speak of and we've gone up to 900 and today 1200mg of Walnut powder.  One of our buddies (thanks LK!) took a walnut half into their work lab to weigh it so we'd have a better idea of what we are "eating" vs a whole...  The one she weighed was 2.85 grams for a half. (But that's what most folks would call 1 walnut).  So he's up to over 1/3. :)  That's pretty amazing.  Now I still have no idea what would happen with a pecan or hazelnut, and don't intend to find out anytime soon!  But that's great progress...  "Life" insurance - right? We figured this is a 6 year adventure we're on, and we're not even at a year yet.

Our snow adventures were interesting.  The allergist ran low on the walnut powder again two weeks ago.  So the monday before the snowstorm (last week), they didn't have it yet.  Tuesday they had it but closed early b/c of the bad weather coming in (which didn't hit but I don't blame them for closing).  They've changed suppliers for their walnut powder, so maybe this will stop happening now?  I hope so, it causes a LOT of parental stress!  Wed morning they had planned to be closed but we called and caught them there and Daniel zipped over there to get the doses.  Then the 2" in 2 hours hit.  While everybody was trying to get home.  Daniel got stuck in the crazy traffic but thankfully was almost home when all the streets turned into parking lots.  He stopped at the local bank and walked the last bit home with the meds.  You do what you have to do, but on some level you have to laugh.  He came in covered in snow (much to my amusement).  Then thursday the preventative asthma inhaler ran dry and I had to venture to the drugstore (but could easily have walked it).  Why there is no counter on the QVAR inhaler I have no idea, but I'm going to email them.  We also set up an automatic refill on it and they will notify us when it's ready so that won't happen again.

The new walnut powder is coarser than the old, but we kept a very close eye on him for the first dose, and nothing seemed amiss.  He's been on that for the last week or so and it's going fine.

Cool stuff - Epinephrine and school stocking info - this is a pretty darn good article about epinephrine in general, why it's important, and legislation across the US to make it available for the 25% of emergencies that are unknown/new reactions in schools.  Right now depends on where you live if a school nurse or staffer could give your kid an epi shot without a prescribed dose for your child.  Kids have died because these laws weren't clear and epi was available (another child's Rx) and wasn't used.  Stock epi solves that problem.  (unprescribed epinephrine available in schools).  With the increase in allergies, this stuff should be in public places, just like heart defibrillators.  It is the ONLY thing that can stop an anaphylactic allergic reaction.  Now that we're about to enter public schools I'm seeing just how scary the lack of clear policies can be.  NC needs to catch up to the rest of the US and get some clear laws in place to allow stock epinephrine and to protect those that have to administer it.

Fun snow stuff - we finally got the kids skiing this weekend (in NC) - shockingly the conditions were awesome.  We've created two little ski monsters though!  We had no troubles with allergy stuff with ski school, but we had to be creative on how to keep epis in the temp range while skiing.  (inside backpacks under jackets for instance).  It all worked out.

Stay safe friends!

Tuesday, February 4, 2014

big kid school, free epi training, and allergy cards

Feb 4, 2014
Day 256

Allergies have been high in our minds the last few weeks - we've moved up to 600mg of walnut powder for the daily dose. Tomorrow we go to 700mg at the allergist. It takes a lot of time, but he's thankfully a very agreeable kiddo.  He gets a bag to take whatever toys he wants... and sometimes he entertains everyone with his costumes and antics. This was 2 weeks ago - my little protector!  I hope he stays this agreeable for the years we have of this in our futures!

The superbowl (and of course party with lots of food) - was a great success, and in no small part to the friends (our local family!) that helped make sure he was safe and that everyone knew not to give him food without a parent okaying it.  Our host/hostess sent us this photo of the "baked goods" end of the table before we even GOT to the party.  :)  We also had him wearing allergy alert stickers so that those folks that don't know him would know not to feed him.

In other news, we just signed him to start kindergarden in July where he will join his big sister at the local Elementary school.  EEK.  We are barely starting those conversations with the school, eventually the school nurse, the teacher (we don't know who yet), and the allergist.   It's a LOT of paperwork, planning, and thinking through what makes sense, how to approach people, and how to most importantly keep him safe.  We don't want to induce some crazy burden on the school, but we don't want them to ever need to inject him with an epi.  Heck, I don't want to ever have to inject him!  (again)
This is amazingly stressful to think about leaving the "nut-free" preschool world and having to depend on others (some of whom we will never know), to keep him safe, at an age where he can't quite protect himself (or read the labels).  We have been researching on the parents of kids with food allergy forums (you need to register), went to a 504 plan webinar (you can watch the video), and talking to teachers, other parents, and anyone with any experience in this area.  The allergist was surprisingly negative about a 504 plan (he said a health plan is fine).  Given what we've researched, we don't agree, but we will talk it out with patience and come in with humility to talk to the school.  It's not a demand list, it's supposed to be a discussion to decide how we can all keep him safe, and a document that details what we agree upon.  We have a health plan in place for our eldest, but her life is not in immediate danger if it's not followed.  We will plod slowly down this path and take lots of notes...  And I will try not to shake every time I talk to anyone at the school about leaving him there without his army of protectors.  Gotta let go sometime...

Other cool stuff...
-FREE (used to be a paid training!) Epinephrine/anaphylaxis training online.  This is pretty awesome.  If you have friends with food allergies, take the 20-30 min and do this.  You may have to save them one day, you need to understand what to do and when to do it.  And THANK YOU epi-kit for making it free!
1. Go to and click Sign Up.
2. Fill in the Registration Form and agree to the Terms & Conditions.
3. Click Sign Me Up. 

4. A box will appear confirming that your account was created and that you're logged in.
5. Click Continue.
6. Click Begin or Continue Your Training Course.
7. Click Start.

-Allergy cards for restaurants - we dug all over the place and these things are EXPENSIVE and you get two or three laminated cards that you need to remember to get back from the server each time.  We used vistaprint (just picked a business card template), and printed 200 for about $20.  We put his picture on it, and wrote it as a request from him to help keep him safe (people are more careful when they know it's a child that can't protect themselves).  Don't spend your $ on the fancy "allergy" cards.  You can print EXACTLY what you want and get far more of them online from anyplace that makes create your own business cards.  We put emergency info on the back including please don't hesitate to Epi if you see symptoms.  So far it's been VERY well received.  We decided to do this after reading the restaurant blog (see last post).
Much love to you all - it's sometimes a very carefully planned out world we have to live in, but we do it with the support of all of you!
Alli, Daniel, E and P

Monday, January 13, 2014

New year, new reflux?

Day 228
Jan 7, 2014

Happy new year!

A lot has happened in the last two months so we will try to explain briefly.  The powder doses increased by 25mg each time until we hit 300, then it jumped to 400, and now 500mg.  It's a little crazy how much is in the little condiment cups now vs the wisps of powder in the beginning.  He's still doing fine so we can't complain.

We did get pretty nervous before Christmas.  We love the allergist but the devil can be in the details.  They ran out if his walnut powder right before we were set to leave town.  We called every day for three days before they finally admitted they were out.  The short version is they didn't order soon enough and then the shipment arrived late.  We got down to out last dose.  Read that again.  The last one.  And supposed to be leaving town.  I thought we might have to go buy walnuts in shell, wash them, shell and smash them, borrow or buy some medical grade scale...  Ugh!  I thought I had an ulcer by the time they got the powder.  I do have a recurrence of reflux, which is not making me happy.  We did have to pause and remember that we don't have another allergist option.  But at the same time - we politely raised some cain with the nurse and front desk lady.  Daniel got to have the face to face with the allergist.  Great guy but man... he needs to let someone else keep up with ordering before a mom or dad goes nuclear on him.  Daniel tried to push that agenda and so did I.  We can't have that happen again.  There is a lot of time, stress, and money tied up in this operation!  At least they apologized.  Small recompense for the stress :). I've never been so happy to see condiment cups in my life! (Daniel said this to me when I texted him a photo of two ziploc bags full of them!)

But as always... God makes it happen.  It was hard to have no backup plan, no way to solve the problem.  That's torture for engineers!  :). But you have to let go.

Christmas and New Years were wonderful with family and friends.  It was neat to see how many folks kept p in mind and asked questions to keep him safe.  We had a very proud moment overhearing him tell on of our dear friends "you have to check the label," when asking for a snack.  And it's cuter in 4 year old speak / lisp.

Other cool stuff:
-504 webinar Tuesday jan 14 sponsored by parents of kids with food allergies - hope we continue to learn good info tomorrow
-restaurant blog takes on food allergies from the other side - well done and helpful.
-used the heck out of the allergy eats app while traveling.  As the database grows it gets better but some places (Disney) were great!  The mobile app didn't seem to work for Disney but the web page worked.

Happy new year!
The Walton crew