Fear

Last week a 13 year old girl died while at camp in California from taking a bite (and spitting it out) of a treat made with peanut butter.  It was a rice krispy treat.  It was dark and rice krispy treats are typically 'safe' treats for nut allergic kids.  This one had peanut butter mixed in.  This from a news article:

After tasting the treat, Natalie realized something wasn’t right and spit it out. Her mother then tasted the treat and determined it contained peanut butter. The girl seemed fine for the first 20 minutes and then began vomiting, had trouble breathing and went into cardiac arrest.

Natalie was rushed to the hospital where she was pronounced dead.

The family reports that Natalie perished despite the administration of three Epipens, a common brand of epinephrine auto-injector. It is not immediately known how soon and by whom the epinephrine was administered after Natalie began displaying symptoms.

Once again, we urge all parents to be vigilant with their children suffering from food allergy, especially teens. Make sure your child never eats an unwrapped food item that hasn’t been cleared by the parent and always make sure to they take two epinephrine auto-injectors along with them each time they leave home. We invite you to print our Take 2 campaign flyers as reminders and display them prominently in your home and child’s school.

Yep, you read that right.  Natalie was give 3 epi pens.  It would later come out that her Father, a doctor, administered the epi pens along with oxygen.  So they did everything right and she still died.

So I just can't come to terms with this.  I'm having terrible anxiety, am getting up throughout the night to check on Isabel and now have at least 3 epi pens with me at all times.  I am freaking out.  For real.  I haven't had anxiety this bad since Isabel was 2 and was closing in on Vivian's age when she died.  It's bad ya'll.

So.  I read on a support group for peanut allergic parents that our kids are ok right now.  Right now they are OK, and this is huge.  Right now we don't have to worry when they are right in front of us eating our 'special' food.  Right now we can make a plane, face our fears and prepare.  We become proactive to the millionth degree.  We speak up.  We use our big voices and we let our needs be known.  We don't feel bad because we're being a pain and requesting special assistance and accomidations.  These are our kids and it is our job to keep them safe.  If I get up and move my shit at the pool because your kids are eating PB and J's and running around all over the place, don't be offended.  Or be offended.  I don't give a flying you-know-what.  When I scream at my peanut allergic 4 year old to 'STAY BACK!  GET AWAY!  I'M MOVING OUR STUFF!'  Don't look at me like a crazy person.  Or do.  Again, I don't care.  Better yet, maybe ask what's wrong and if you can help.  This is serious.  This is my kid.  Imagine if it were your kid.

So in doing more research about food allergy deaths, epinephrine, etc etc I've come to the conclusion that our action plan is wrong.  If there is a suspected or known ingestion of a food allergen (peanuts/tree nuts) we will give an epi pen first, call 911 and ask questions later.  I expect anyone taking care of Isabel to do the same.  If they aren't comfortable with that (I don't expect anyone to not be) they won't watch her.  Simple as that.  Isabel has asthma and that makes the potential for reactions to be much worse.  I will also be testing people who are around Isabel often (grandparents, aunts, uncle, etc) about what if's and making sure they are comfortable administering an epi pen.  What if Natalie's Dad administered epinephrine immediately?  We will never know, but taking out the 'wait and see' approach to anaphylaxis and going to the administer epi/call 911" plan has greatly reduced my anxiety and fear.  Some allergists have been recommending this currently.

When I heard of Natalie's death I was gripped with fear.  Isabel was with Maddie for the afternoon and I was freaked out.  I almost went to pick her up, but remembered that her Mom is probably better equipped to administer an epi pen than I am!  She's had to administer them to herself a few times.  She goes into transient anaphylaxis once every few years.  No known food allergies!  So I calmed down and anxiously waited with Logan by the window for Isabel to come home.

Now for some cute pictures, because this post was too heavy.  Isabel declared our park date while Logan was in therapy 'the best girl time ever!'

Quick update

I had a post written about Logan's appointment with the developmental pediatrician and somehow it didn't get saved.  He's the quick recap.  Basically she haphazardly gave him a PDD-NOS diagnosis on a referral for ABA therapy.  She said he's below the threshold for autism, whatever that means, but that she still wants to track his progress and he may in the future have that diagnosis.  So I looked into ABA therapy and will have a visit to one center near our house.  Both Logan's speech therapist and occupational therapist aren't really on board with ABA.  They both feel it's more training and repetition rather than behavioral intervention therapy.  I'll go and see and hopefully have more clarity on what we're going to do.  We definitely won't start any new therapies before our trip to MT in August.

Interestingly Logan might qualify for the PPCD school (special preschool/preK program offered in the school district).  My neighbor currently teaches there and I went over and talked to her for a long time last week.  She gave me the number to call and who to talk to.  Logan's current preschool teacher will be moving there next year.  Both of these ladies are great and obviously have a special interest in Logan and helping him succeed and get ready for kinder.  The PPCD program is an inclusion program and it a partnership with Isabel and Logan's preschool and the school district.  Isabel would be eligible to attend preK there next year but it is very competitive to get in and is almost $900/month.  So, if Logan could get in it would be fantastic.

My birthday was Tuesday and Brian attempted to make a really nice from scratch cake.  As he was getting the oil down from the cabinet the glass olive oil bottle fell and shattered on the kitchen floor.  He was cleaning that up and the very slippery broken bottle fell from his hand and landed on his foot.  Lots of blood and clean up with that one.  I really thought he needed stitches (and probably should have gotten them), but he had an important meeting the following day and didn't want to bother with urgent care.  So he's been using steri strips and a bandage to keep it closed.

Brian decided to make the cake a couple of nights ago.  It took hours and when it was finally done he tasted it and this is what happened.

Brian: Hmm, I'm not sure why the coffee didn't blend in with the cake. You can really taste it.
Me: Uh, you did brew the coffee first, right? I mean, you didn't put an entire cup of coffee grinds in the cake, right?
Brian: Damnit

It was actually 2 1/2 cups of coffee!!!!

So he made it again today and it turned out great.  Third time was a charm.

On my birthday my friend took the day off of work and we went to the mall!  We looked around a bit and then had a nice lunch.  She came over afterwards and we ordered pizza and hung out after the kids came home from preschool.  So nice and thoughtful, especially since Brian was scheduled to get home late.

Last night we were up late with Isabel.  She was coughing and we were worried.  We kept her on xopenex throughout the night and turned the monitor up to hear her breathing.  She wasn't wheezing, but just continuous coughing.  That was how her 3 day stint in the ICU started, so we were very worried.  She finally stopped coughing around 1am (after we doubled her xopenex as per her action plan) and slept soundly until 5am when she needed more xopenex.  That shit is amazing.  I love it and now use that as my rescue inhaler too instead of albuterol.  She seems pretty good today.  Very minimal coughing, but we kept her inside and had a very low key day.

I am still in my PJ's at 5:55pm.  I cleaned the ENTIRE day.  I just finished about an hour ago.  It feels so so so good to have a completely clean house, even if it did take almost 8 hours.  Brian helped out after he finished the cake and washed what seemed like every dish we own.

Other than that we've been spending a lot of time at the pool.

Slide!

Happy boy!

Taking a break.

New outfit from Grandma.

Brian's Bday, July 4th weekend

I swear I already wrote this post, but I can't find it.  Ah well.  Let's start with Brian's birthday.  It was on a Tuesday.  Fun day of the week, no?  So Isabel and Logan decided that he needed to have a soccer birthday party. So I bought a Wilton soccer cake pan and went to work.  It was by far the easiest Wilton cake ever.  It took about 30 minutes from start to finish.  Black and white icing?  Yes please!  Easy peasy.  I made sea scallops with an avacado/wasabi sauce and roasted asparagus to start.  It was amazing.  SO  good.  Took bad diver scallops are so expensive or I would have bought 10 lbs!  But they are expensive, so we had 4 scallops each.  I also made shrimp/tomato risotto.  It was a new recipe.  Not as great as I've had, but still pretty good.  The recipe didn't call for shallots, only a white onion.  So strange.  Shallots are definitely essential to risotto.

The kids had to add sprinkles.

Happy Birthday Brian!

Wednesday Brian's office closed early, so we headed to Houston around 3pm.  We got to Houston and Tank immediately decided he needed to get sick.  He was peeing out of his butt every 20 minutes pretty much the entire 4 days we were there.  I think everyone really thought we were going to have to say goodbye to Tank (he is very very very old), but I took him to the vet on Monday and she gave us an antibiotic and sent us on our way.  The antibiotic is like a miracle pill.  Tank was better the next day.  I've gotten in the habit of letting him out multiple times an hour and yesterday he refused to go out.  He's like "please don't make me go out in 19394 degree weather AGAIN.  I'm fine people."  Yay!

So Thursday we got up and went to the 4th of July parade.  A ton of people and a surprisingly long parade.  It was about an hour and a half long!  I think we all had fun.  Lots of candy thrown out and fans passed around.  After some swimming Lila and crew and another family friend couple came over for some delicious brisket Grandma cooked and other good food.  Yum!  Lila, Jennifer and Greg went swimming with us.  She's practicing for the ProAm surfing competition.  (Is that real?  It sounds legit, right?)

Making pancakes.

Parade fun.

Lunch al fresco

We stayed up late and saw the top half of fireworks.  Pesky new construction got in the way of the view.  The kids didn't seem to care or notice, so it was all good.

Back rub from Grandpa.

Waiting for fireworks.

Friday my Mom and I went to a few stores.  There is a kid's resale shop right by there house that is amazing.  I love going there and finding bargains.  We have the same store in Austin, but it's about a 30 minute drive for me.  The kids tried on their wedding attire that Grandma made.  SO SO cute!  They are all going to look great!

Fargo had a long weekend.  It's tough being so pretty.

Saturday we went to the Dynamos soccer game.  It was a lot of fun and we got a bonus fireworks display after the game!

Sunday we headed back after a little swimming.  It rained on us a little.  Such a nice downpour.  We don't get many of those in Austin.  We had to stop for Tank, but still managed to make it back in 3 hours.  Not bad!

We had a great weekend!

My princesses!

Keeping Tank busy at the Vet's office.