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

After 3.5 years of remission - it took 7 days for a full blown flare.  Seven Days.

I am not going to go into what a full blown flare looks like again.  If you are having trouble remembering or you are new to HWHAP - you can read: The Sh*t that is Crohn's Disease here! I don't mince words in that post.

Last Monday, the 12th was her Remicade appointment date but we found out the Friday beforehand that there was a lapse in her coverage and we were having trouble getting answers.  There were words like:  pre-existing condition, pre-authorization and you need to call financial services but ultimately they canceled her appointment and would not allow us to cash pay.  I was frustrated but not OVERLY concerned. #Mistake

I honestly had no idea she would get this sick so fast.  After 3.5 years you forget. You forget how completely awful it is.  It is so awful! I was even brazen enough to allow myself to believe that she would be ok.  Maybe she doesn't even need Remicade anymore!  Maybe, just maybe she can stay in remission without it!  Her doctor has told me countless times that they do NOT take children off of biologics - it just does not happen.  Why would I allow myself to think Sophie would be the exception? I don't know why.  I just know that it is hard, hard to know that your child will need this for the REST OF HER LIFE. It hit pretty hard. Again.  Which seems ridiculous but this disease is ridiculous so I think it is only fair that my emotions can be ridiculous too!

I left Sophie for a few minutes this morning to run to the gift shop and cafeteria.  While in the gift shop my emotions got the better of me and tears started flowing. Being here is hard. Coming through the ER was so hard.  We were in the same room that we had when Nate was diagnosed.  Being back on the GI floor brought back so many feelings.  Just ALL OF IT is hard.  Another mom came up to me and asked if she could hug me.  Not is a creepy, stalker way! She had tears too.  The mom bond is strong.  Being the mom of a chronically ill child somehow, if possible, makes the bond even stronger.   I didn't even get her name, or her story, but I could see the sadness in her eyes too. We are same same.

And now here we site in her comfy suite at Children's Medical Center Dallas overlooking downtown, an IV in her arm -- she is receiving the Remicade that was previously denied and we are hoping this kick starts her little body right back into remission.  She wants to go home and although her doctors wanted to observe her for one more night, they are granting her wish and letting her go home tonight! As long as everything goes well, of course.  She will miss school for the rest of the week as she rests and allows her body to recover.

2.5 years of hell was forgotten in the 3.5 years of remission but it only took 7 days to bring it all back and now I am hoping 7 days to get her back into the remission bubble.  It may take mommy a little longer to forget and will certainly take a while for the guilt to go away.   This sweet girl pays the price when things go wrong, when balls are dropped, and denials are made.  It hurts every fiber of my being to see her suffer.




This girl though is fierce, she is a fighter, a warrior and she will warrior on.
I am so honored to be this warrior's mom.  #SuperSweetSophie #CrohnsFighter #WarriorOnLittleOne

Thank you all for your calls, texts, and messages!  Thank you also for always allowing me to come here when times are tough.  When things are good I easily forget what comfort I find here, it is nice to always be able to come back when it is needed.

To say that I hate the above picture is a complete understatement.  UGH!  That photo was taken a few years ago along with some other really great photos of my littles but I never shared the one above with anyone! My kids are adorable - duh!  If I could crop myself out it would be perfect!

When this photo was taken I was still spinning from both diabetes and Crohn's. Although you cannot tell it in this photo, Sophie was very, very sick and I believe we ended up in the hospital for a week just a few days after this was taken!  I knew the photo shoot was coming up and it was all I could do to get clothes picked out for the minis.  I didn't even give myself a 2nd thought.  I remember the morning so clearly getting everyone ready and then thinking ---- what the hell am I going to wear? Do I even own makeup anymore? Do any of my clothes even fit right now?

The answers were:

Who the hell knows!
Not much makeup!
Nope, nothing fits!

I knew I didn't feel comfortable with my looks that day but it wasn't until we got the proofs back that I really took a look at myself and wondered who I had become.  Since the birth of Ms. Emma Leigh my weight had gone up and down -- that will happen when you are pregnant every 2 years or so!






I'll add a few cute photos of Emma here because she rarely gets any FaceTime on HWHAP:





Ok, back to my point . . . had I gotten to that yet?  I started looking at old pictures and got totally distracted!

This post is supposed to be about me.  So, my weight has fluctuated a lot since having kiddos but I had gotten down to a comfortable size 6 after I lost the Nate weight.  I was totally happy at a 6.

Until . . . . dun dun dun . . . Nate was diagnosed.  You all know how hard that was blah blah blah -- I've blogged that to death.  Then Sophie was diagnosed with Crohn's and blah blah blah it was hard again.  My point being after those 2 major life changing events I totally lost myself.  I no longer cared.  I gave up on me.  I was just trying to survive the day to day of raising 3 kids along with diabetes and Crohn's in the mix.  I think my weight went up to an 8 and then a 10 again which isn't a huge deal to some but I am 5'2" and fluctuated between a size 2 and 4 before I had Emma.

Then last summer I lost a lot of weight due to stress and other factors that are not bloggable but then as soon as I got happy again I started gaining and gaining and before I knew it I had yo-yo'd back up!


Then in January of this year I turned forty! FORTY! Why do I keep admitting these things?! 

I started trying to lose weight again in March when during spring break I couldn't fit into any of my clothes. What the what?!?!?! So, I started dieting hard in March and was feeling totally frustrated and depressed by the end of April with NO results. Had my metabolism changed so much so quickly?? UGH!
I need to add that I have NEVER felt better in my life. My energy level is off the charts...it is crazy. I also feel like it has helped my anxiety level so much. I am just happy! I know it sounds crazy. I am actually still taking the Plexus Slim drink, not the accelerator, because it makes me feel so great.

To recap --- I was needing a size 8 when I started, my goal was size 4 and now I am wearing a size 2. Being the shortie that I am it's not too small or to thin. I still carry some meat in my butt and thighs but that is just how I am built.