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.

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.

Tomorrow my 1st born child will leave elementary school for the last time.  It is her last day of 5th grade!  She is growing up so fast.  I remember when she was a baby and people would tell me that it goes by in the blink of an eye --- I honestly did not understand what they meant.  Now I do.  How did my baby become 11?  How is it that this precious little one can be leaving elementary school going in to .... ... middle school?

The year that Emma entered kinder was the year that Nate was diagnosed with Type One Diabetes.  We were about a month into the year and Emma was struggling with kinder.  It was a big school, a big class and I felt like Emma was getting lost in the shuffle.  We had just started exploring private schools when Nate was diagnosed.  Emma and her school problems quickly got placed on the back burner and stayed there for a while.  My entire world had fallen apart.  I was barely able to manage so it seemed at the time.  I felt like we left her there and she was going to sink or swim --- there was nothing I could do for her at the time.  Luckily, she swam.  She's a swimmer.  I love that about her!  We ended up adoring her school and she thrived there!

A few years later, Jim and I divorced and I left our home and the only school she had known to start our new life.  Not only was Emma forced to leave her beloved school but all of her sweet, sweet friends also.  Starting a new school in the middle of 3rd grade wasn't easy for her.  She missed her friends and everything was so different at her new school.  She struggled.  This time I tried to help but ultimately it was Emma that pulled herself up and swam again.  She's made lovely new friends and is such an excellent student.  She is so strong, so brave and so intelligent.  Her inner beauty just shines through so brightly. I could not be more proud of the young lady she has become.

So, bare with me tomorrow  . . .  I know I will fall apart when she walks those hallways for the last time.  The Mommy in me is absolutely terrified that middle school is going to eat her alive but I should know better.  My girl is a swimmer.  She will find her way.  I will help her when and if I can but I know she has the tools, strength and knowledge to handle herself with kindness and grace.  She will be fine.  She will be more than fine --- she will be great.


She made me a mommy --- she made me heart whole.  I love her so much!




Hopefully, tomorrow I will have an update on how the day went and post some pictures on her very last day in elementary school.  Pass the tissues, please!!!

We had so much fun with Tressa taking our family photos this year! The wind was blowing 40-50 MPH and that wind brought in a cold front! Nothing could stop her from getting these pics!! She never stops taking pictures and just got the most fantastic shots!! We just love them and are so pleased to share them with our friends and family!