Happy Holidays from the Hivory Family -


This year - 2016 - is not our year!  We are a blended family - what that means for us most of the time is more children, more happy, more love, more smiles, more laughter and sometimes more hard, more sadness, and more tears but mostly more happy! But every other year - the even years, Ian and I are left without all of the children, the smiles, the laughter, and no matter how many years go by -- it doesn't get any easier!  Look at those sweet faces - how can we Christmas without them?




The answer is -- we don't!  Today is the 24th but it is not "our" Christmas Eve and tomorrow will be the 25th but not "our" Christmas day.  The wonderful thing about our family is how well we all get along -- the children are SO loved!!  We really could not ask for anything better for them - they are with the rest of their families celebrating and sharing their smiles and happiness with them this year!

Ian and I busy ourselves during this time and although it is never easy we are comforted by the love, happiness, smiles, and cheer that we know the littles are experiencing. That being said the tears still flow and my heart still aches to be with them during this time!



So, before I take myself to the spa for a day full of pampering I will share these amazing smiles with the rest of you . . .

Thank you to Natalie K for capturing all of this happy!

I posted this picture one year ago today at the beginning of Diabetes Awareness month.  It came up in my FB newsfeed this morning.

The same medicine (insulin) that keeps Nate alive, is the same thing that can kill him if given just a little too much.

Last week we had a terrible scare.  I had just finished getting ready for an earned Plexus event at the Gaylord.  I was in my hotel room about to head out and my phone was blowing up with text messages.

Ian texted me and told me that Nate's insulin pump, his Omnipod had "alarmed" that there was an occlusion and it had stopped working right as they were sitting down for dinner.  They were out so we both agreed that an injection was the best course of action.

A few minutes later Ian sent a follow-up text to confirm the amount of insulin given.

Laura!

Baby!

Is this what 2.35 unites looks like?

Over here!


He knows me so well.  He knew I was distracted so he kept trying.  His gut told him to do so.  I finally responded.  I called him right away.  I was hoping that he was kidding but he was not.  He had mistakenly given Nate 23 units insulin instead of 2.35.

How could this happen?
I was scared.
My head was spinning.
I was having trouble processing.

I wanted to be with Nate.

We made a plan to meet at the house, load up the kids, and head to the hospital.  We did the math and there were just too many carbs to consume to keep him safe.  To keep him alive.

The drive home was excruciating.  6 o'clock traffic.  Ian was feeding Nate.  Cookies, cake, and candy - Nate's dream come true!  But his tummy started to hurt and he couldn't eat anymore.

Ian was so calm, yet nervous at the same time.  He felt overw
helming guilt.  I could see the fear and disappointment in his eyes.  It made me love him even more.  You see, anyone could have made this mistake. It is not terribly uncommon.  Most people have no idea how small 2 units of insulin actually is when drawn into a syringe.  It is difficult to draw up such a small amount.  These is no 5 on the syringe so often the 10 is mistaken for 1.0.
In the hospital I have noticed that when the nurses give insulin to a patient a 2nd nurse has to come in and verify the dose before it is given.

---23 units could have been a lethal dose for Nate.

We got to the hospital and an insulin overdose gets your priority access.  We went back and after blowing out 2 IVs Nate's blood sugar was going up --- not down!  He was so nervous, so scared -- his adrenaline was pumping.  They finally got an IV in for a glucose drip and we waited for him to bottom out.  It never happened.  TWENTY THREE units of insulin and he never dropped below 190.

What in the world?

Was it the carbs?  Was it the adrenaline? Was it the combination?  Was it my sheer will wishing for my son to be ok? Is it possible to wish that hard for something?





On a different note --- isn't he the cutest boy you have ever seen?  LOVE . . . Super Nate!


We stayed at the hospital for about 5 hours to make sure Nate stayed safe.  We watched Big Hero Six and Ant Man.  Nate charmed all of the nurses and the doctor.  Here really is adorable.  Ian never left Nate's side.  I love the way he made him feel safe.

The 1st question the few people we have shared with have asked me is, if I was mad at Ian?

I was absolutely not mad an Ian.  It could have happened to me and he's my husband -- we are family.  I stand beside him, I support him, I love him.

That is what parents do--support, show grace, forgive hard, love hard, and stand united.

I've been waiting all day.  I called twice.  It should have been here by 3p.

Here we are now 7p and the UPS truck just rolled up the street.

Finally.

Sophie's next dose of Humira is this Friday and I've been waiting for it to arrive.

It is stressful for me knowing she needs this medication and not having it on hand.  I have to call each week and set up a time for delivery.  Then wait.  I hate the waiting.

This week is a big week.  Her 3rd dose.  Friday.

An update on Sophie:

When we started the Humira Sophie was taking 40mg of Prednisone to keep her symptoms at bay.  We have dropped her dose by 5mg each Saturday since her 1st dose.  A week and a half ago we dropped to 15mg and after 2 days on that dose her symptoms started coming back.

She had been to the fair with her dad ---
Fair food.  It had to be the fair food!!

But, it was not the fair food.  The symptoms increased.

This last weekend while we were on vacation, her dad and I decided to increase her dose back to 20mg in hopes that she would start feeling better.  Her doctor fully supported this decision. After several days on the higher dose ---today she is feeling better with no symptoms.

What does this mean?  Why is this happening?  Is the Humira not working?

When she started Remicade it seemed to have worked instantly.  Maybe it wasn't instantly but she had been so sick that it did seem to bring almost instant relief.

It has been a tough 7 days.  I have no idea what our next step will be.

She is scared.  I am scared.
She is concerned. I am concerned.
I cannot tell her everything will be ok.  I do not know that it will be.

Her doctor has ordered stool studies, called in more prednisone, and wants to start her on Flagyl.  She said it can take time for the Humira to build up in her system.

More waiting.  Waiting for it to work.  Waiting to find out if it will work.  Is this going to work?  Please let this work!

An update on the mom:

These last few days/weeks/months have been hard.  I have struggled more than I thought I would.  It is hard to see your children struggle and/or suffer.  She was in remission for so long, that besides going to the hospital every month for treatment, it was easy to forget that she has such a debilitating disease.  It was easy for me to push it all down and live as normally as possible.  My understanding is that this is pretty common.  Once you get through a bad flare into remission you just want to forget.

Maybe I never fully dealt with her diagnosis.  It was just months after Nate was diagnosed with Type One Diabetes.  I was probably in shock or denial or still in the diabetes diagnosis haze.  And let me be clear --- there was a big haze!  There were tears and there was sadness but it was all a blur from the haze.

I'm not sure I ever really sat with the sadness. I was too busy making it better for her and for Nate and for everyone else.  I firmly believe that it is ok to be sad and I think for a long time I have tried to hide all the sad and the mad from Sophie but I know now it is ok for her to know.  She has always been so stoic and brave --- I want her to know it is ok for her to be sad and mad or both at times.  It is also ok to be scared.  This is a big disease to carry and she needs to find her way.  I can't do it for her - I will be beside her every step of her journey to become her own warrior.  We have always called ourselves warriors.  Warrior Mom and Warrior Little!

I am reading the book, Love Warrior by Glennon Doyle Melton.  This woman is in my head and in my soul.  As I was reading her words yesterday on the plane, they are so much of everything that I am and that I believe and that I want for my children.  She is like a magical unicorn that has been inside my crazy brain! Or maybe we are all more alike than most feel comfortable admitting? Slightly off topic but it is a great book that should be read by all!

My biggest take away yesterday while reading was a reassuring confirmation on something I had written down earlier this year and she said almost the same thing in her book.

For my children -- Making them warriors: I cannot take away their pain, I can sit with them in the pain because it is part of our journey.  We can handle hard things because we are warriors! With all of my soul I want them to be warriors and always warrior on! Part of becoming a warrior is being brave enough to feel it all and walk through it all.  That is how you find the beauty -- you have to walk though and feel it.

I feel it all and I will continue to walk through it.

Sophie and I are going through a sad season but we will walk through it together.  I love walking beside her and watching her grow strong and resilient.

Last Friday was Sophie's 2nd dose of Humira and our 1st time to do it at home ourselves.  There were a few tears and a lot of nerves - Sophie and I were both very nervous! 

She was nervous because she knew how it was going to hurt and I was nervous because I knew how it was going to hurt her too.  

It goes against everything in your mommy soul to hurt your child.  I remember feeling this way after Nate was diagnosed with diabetes when I had to hold him down to give him his insulin shots.  Those shots have gotten easier for us and I know the Humira shots will get easier for us both with time too.  

From Facebook post 8/30/2016:

I ❤️ this! It showed up just as I'm signing #SuperNate up to go to #CampSweeney next summer for 3 weeks. 😬 #PerfectTiming ... Also, sharing for all my #mommyfriends that are preparing to send their babies off to #college ❤️ #parenting #raisingthemupright #lettinggo

From 2015:

March 1st 2010 - A day of hope and the date that #SuperNate started pumping with the OmniPod Insulin Pump.  Six year y'all!  I say this every year but where did another year go?

3/1/2010 - 20 Months

We are still loving the OmniPod and are so excited about the future plans of the company! You can read about Insulet's artificial pancreas system that will use the innovative and differentiated OmniPod platform, the latest DexCom Continuous Glucose Monitoring (CGM) technology and the algorithm licensed from Mode AGC.  For all of the exciting information click here. 

Did you read that?  So exciting - right?  ArtificialPancreas anything excites me big time!

Just last night during Nate's pod change (which he is still not a fan of) he said he wished we only had to change a pod once a year.  That would be nice.  Although we do love the OmniPod,  pod change nights can often still be traumatic, sad, and overwhelming for both of us.  It doesn't really hurt, I think it is just the anxiety and build up of the entire situation even though we try to keep it light and easy.

He stresses big time.  Which is hard for this momma to see.  I used to be able to change his pod while he was sleeping but he usually wakes up now and an is extremely agitated and angry.  So, although he wants me to do it while he is sleeping I rarely do because his reaction is usually much worse than when he is actually awake.

I have found that keeping him really involved in the pod change does help.  He likes to have the control so I happily follow his lead on how much he wants to participate each time.




Last night he wanted independence so after we prepared the pod together he went to his room and did the rest.  It was a no muss and no fuss kind of night.  Well, until he went to sleep, his blood sugar sky rocketed, I was up all night chasing highs, got a little too aggressive, then spent the wee hours of the morning changing lows.  Just another day with diabetes - Right?



#NODATA --- Just like my brain today!



Super Nate then ...




Super Nate now:

I shared this recently on Facebook and because I want to start sharing and pouring more into my blog for myself and for others I thought I would add it here as well.  

I originally posted this on 01/07/16:

The 1st picture came up today in my Facebook memories. 

I remember this day 3 years ago like it was yesterday. All three of my children were sick and it was miserable. I was a single mom with no job, I had recently moved out of the only home they had ever known and moved in with my parents, and I had not worked since the birth of my oldest daughter, Emma in 2004. I had no idea how I was going to cover the copays for all three of them, not to mention the cost of the prescriptions that they would need. I vividly remember thinking “How did I get here?”.

WOWOWOWOWOWOWOWOW - Our daughter Lexi and her cheer teams are killing it this year.  Yes, I said TEAMS.  She is on 2 teams this year (and this year only) - Junior 2 and Senior 3.  Both teams are doing so well - - - we are spending every weekend watching cheer competitions and she is collecting trophies and jackets! She is so passionate about cheer and it really shines through in each and every performance.  I love watching all of her sass on the stage!

Some of my favorite pics from this season:







And these . . .








And then there is this:




Oh wait . . . and this one:



Yikes - - - that is her on the left ---- way up in the air.

This weekend we have a big one in Dallas!  The NCA all star competition.  Stay tuned for updates and pictures!




& Ian :)