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 :)

Tonight was a big first for us in the Hivory House --- Our oldest, Emma went to her 1st middle school dance! It was the "Sweetheart Dance" but our girl went with a group of her friends (Mom wipes her brow in relief).  She is 11 almost 12 and is such a sweet girl.

She's been through a lot in these 11 year! Both of her siblings being diagnosed with such big illnesses, I feel she gets so little of me, the divorce was so hard on her, then the move to a new town and a new school --- WOW!  She has handled it all like a champ.

 It is so good for this momma to see her so happy and absolutely thriving in middle school.

She is in 6th grade and we just picked out her courses for 7th grade with a few AP classes and she is taking up MS tennis.  I am so proud of her and love her beautiful soul!

At the end of January we met with Sophie's GI and Dermatology doctors.  By the time we got in to see her dermatologist the psoriasis that had been so miserable for her on her face had all but disappeared.  We got a prescription for hydrocortisone for her face and we upped her probiotic dose from 1-2 a day to 2-3 a day.  Once we upped the probiotic her psoriasis cleared completely.

That made our decision so easy on how to move forward with her CD treatment --- because the Remicade has worked so well for the last 4 years and we are currently controlling her psoriasis with ProBio5 we will continue on the current path.  She received her last Remicade treatment on 2/1 and we have seen no signs of an outbreak anywhere.  This is fantastic news!

Her current treatment plan is Remicade every 8 weeks, 2-3 ProBio5 daily along with a large dose of Calcium and Vitamin D.



I love that laugh!  She is so strong, so brave, so beautiful and so incredibly happy!


Oh - ya! Did a little blog maintenance/update!  Looks good - right?  #HivoryFamily

This is the one where I update you on the Doodle AKA Super Sweet Sophie AKA Bad Ass Crohn's Fighter . . .

If you are new to the HWHAP bog, you can read Sophie's story here.
To get to the nuts and bolts of CD click here.

Sophie was diagnosed with CD when she was 4 years old, the 1st few years were spent out of remission searching for something that would get her into remission - she was on and off steroids and in and out of the hospital until we finally found what would work for her.  Sophie has been on Remicade since April of 2012 (she was 6 years old at the time) and we have had such great success.  She has been in Remission since that time minus a small set back in October of last year (2015) when she was unable to get her infusion on time.  Unfortunately, in October of 2014 she started suffering from psoriasis of the scalp that continued down her neck.  It was miserable but we kept it contained with creams and ointments.  We even upped her Probiotic (ProBio5) and added the Plexus Body Cream and that made it almost disappear.  Enough so that it was no longer an issue for her for almost a year.

But, sadly, it has come back with a vengeance on her face and in her ears which is miserable for her not to mention she is now almost 10 (WHAT?) and there is a cosmetic issue with it being all over her face.  She is self conscious and at the age of ten kids do not really have filters so she feels like she is answering questions about it all of the time and it is making her feel very embarrassed.  Beyond the cosmetics it is itchy, red, and painful so the girl is miserable.

The unfortunate part is that the Remicade is what is causing the problem.  Ironically, although Remicade is used to treat Crohn's Disease, Ulcerative Colitis, Rheumatoid Arthritis and Psoriasis it also in rare cases can cause Psoriasis

We have been working with her pediatric dermatologist and her GI team to try and get it cleared.  We met her with gastroenterologist this morning at Children's to discuss other GI options.  I was nervous going into the meeting because Sophie is doing SO well but her health is very volatile and changing just one small thing can throw her out of remission so quickly.

There is another anti-TNF drug that I was hoping would be an option but we found out today that Humira may cause the same issue and not solve the problem at all.  The other option that was offered was to put her back on Imuran or Methotrexate which did not work for her AT ALL when tried previously but they believe because she is older now and not sick there is a chance one of these could work at this time.  The problem is we won't know until we try and the unknown is incredibly scary.  When Sophie is sick she is very, very sick ---- I am certain none of us are ready to go through that again right now (or ever).  They would start her on steroids before making the change and then we will have to wean her off and take it one day at a time.  The thought of this is terrifying to me.  I have been sick all day.  The knot is my stomach is making me nauseous and I have been unable to eat all day.

There is a newer drug on the market but it is not FDA approved for young children.  Entyvio is another infusion drug but it works differently that the TNF blockers so there is a chance it could keep her in remission and prevent the Psoriasis.  The hospital's youngest patient to be approved is 16 and they were able to get her approved because she is "adult size".  Sophie weighing in at a whopping 40lbs most likely does not qualify but this is the route I am leaning towards if Remicade is no longer an option for her.

We meet with her dermatologist and gastroenterologist again on the 29th at 9a to make our final decision.  They drew labs today to see if she had developed antibodies to the Remicade so we will know more once those are back.  At this moment I am leaning towards trying to get her approved for the Entyvio but I may change my mind a few hundred times between now and the 29th.  Her next Remicade date is 2/1 so we have about until then to decide so that she doesn't get sick again.

Today while talking about the options for Sophie with the doctor and her dad I was looking at him and thinking this is it?  Us?  These are the 2 people chosen to make these huge medical decisions for this small human?  What?  Who thought that was a good idea?  There is absolutely nothing that qualifies us for this.  Who in the world thought this would be a good idea?

This is certainly not about me - it is about her BUT holy hell I feel so overwhelmed and inadequate.  The warnings on each drug are completely terrifying, the thought of her coming out of remission is also completely terrifying!

Life with a chronic disease is always such a fine balance of good and evil.
Or choosing the lesser of two evils.





* Methotrexate can cause serious or life-threatening side effects on your liver, lungs, or kidneys. Tell your doctor if you have upper stomach pain, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes), dry cough, shortness of breath, blood in your urine, or little or no urinating.

* Long-term use of Imuran increases the risk of developing certain types of cancers (eg, leukemia, lymphoma, skin cancer). A rare type of cancer called hepatosplenic T-cell lymphoma (HSTCL) has been reported in patients treated with Imuran. These cases have been fatal. Most of these cases occurred in teenagers and young adults who had Crohn disease or ulcerative colitis. Some patients who developed this cancer were using Imuran along with certain other medicines called TNF blockers (eg, infliximab). Tell your doctor if you have or have ever had any type of cancer.