Princess P

So what is next for Princess P?  Here is what we know so far.  P will start on two different medications.

1) Remicade- P will get this through an IV.  She will go for infusions every other week for now. We will be making the trip to Ann Arbor quite a bit!  Each infusion could take between 3-4 hours to administer.  I am working to put together my bag of tricks for these trips to Mott's.  P declared that she needed a new bag just for the doctor.  She shopped the Thirty-One catalog today to pick one out.  She also decided she needed it personalized with "Princess P" instead of her name.  She makes me smile! 

2) Imuran- This is a daily medication that she will take to help keep her body from rejecting the other medication.  Also used for transplant patients so that they don't reject their new organ.  Same thing goes for P. Her body is working overtime right now and it will be confused by the Remicade as well.

In addition to these medications, P will meet with a dietician to develop a well balanced diet that her body reacts favorably to.  We will work figure out what foods might trigger inflammation for her.

We are excited to begin treatment now to help get her into remission quickly!  We are also hopeful that she will begin putting weight back on.  She has lost about 20% of her bodyweight since Thanksgiving.  We are looking forward to getting some meat back on those little bones!!

What is it??

We have received a ton of support and prayers for our little lady.  THANK YOU!    We have also received a TON of questions.  Just like with our adoption journey, we didn't just live it...we wanted to help educate others about it.  Many people have no idea what Crohn's is.  Honestly, I had no idea either.  I have done quite a bit of research lately.  ;)   Just a few quick tidbits for you!

What is Crohn's?
I could stumble through telling you all about it or I could refer you to this link that explains it quickly.  (Yes it is a link for teens but I found this link through the parent site and quite frankly the teen link makes it sound less scary!)

http://www.justlikemeibd.org/about/what-is-crohns-disease.html

Some quick facts
I found this image from another family I met and really liked how it gave some quick, important facts. The biggest thing for me is that there is no cure right now.  P will live with this the rest of her life.  She can still live a very full life and the goal is to keep her in remission as much as possible.

Crohn's

Many people have asked about our spunky little girl.  We thought that the easiest way to explain things would be by using our old blog.  So...here we are again.  Hold on because this is a long one!!

On November 22nd, I picked P up from the sitter and was told that there was blood in her stool that day.  I didn't freak out right away because that can mean many things.  We decided just to watch it throughout the weekend and if it didn't clear up, we would call the doctor.  We went to the Lion's game on Thanksgiving.  On one trip to the bathroom, there was a A LOT of blood.  Still trying not to panic.  It only seemed to get worse so we made an appointment with our pediatrician.  It was decided to treat it as a fissure (small tear).  I called again on December 5th because nothing had changed at all.  The pediatrician sent us to the ER.  She let us choose between U of M Mott Children's Hospital and Detroit Children's Hospital.  We decided to head to Mott.  Penny underwent some physical exams, X-rays and blood work.  Nothing was found.  So we were given a referral to Mott Pediatric Gastroenterology.

Chilling with Daisy

She did NOT like getting an IV put in.  But soon became very curious.

And she is now at her wits end!!  Poor girl!

We met with Mott's Pediatric Gastroenterology on December 16th.  We were instructed to drop off a bunch of "collections" to our local lab.  Joel "manned up" (Is "manned" even a word??) and collected all of the stool samples.  One of the samples tests for intestinal infections but takes about 10 days for the results.  So we were put on a powerful antibiotic in hopes of treating the infection quickly...if that was in fact what it was.  It was a painful 10 days!  She had to take the antibiotic 3 times a day and it did NOT taste good.  The first few days we saw a lot of it come back up.  :( BUT we finally got in our groove and she was a champ!!  She did a great job finishing the antibiotic.   We saw some of her spunk come back.  We were very hopeful that the antibiotic was taking care of the problem.  During this time we also scheduled the upper and lower scope...just in case.  As luck would have it, there was no need for the antibiotic because there wasn't an infection.  We were instructed to move ahead with the scope.

We went for the scope on Wednesday, January 11th.  For those of you who know me, know that at this point, I am not handling this well.  I was a mess leading up the 11th.  Poor Joel had to deal with the patient and the patient's emotional wreck of a mom!  P did great during the procedures and did pretty good coming out of it as well.  Joel and I were able to meet with Dr. Adler and Dr. Cardenas before going back to see P.  They showed us (aka Joel) pictures of P's digestive tract from top to bottom and everything in between.  Everything that they saw looked like Inflammatory Bowel Disease.  And under the umbrella of IBD, it was looking more like Crohn's than Ulcerative Colitis.  (It can be difficult to determine between the two in kids as little as P.)  We still needed to wait for some of the biopsy results.  We also have to do an MRI to get a full picture of what is going on.

We received a call on Friday, January 13th from Dr. Cardenas that confirmed P's diagnosis of Crohn's.  We have been placed on Dr. Cardenas' caseload and will begin meeting with her next week.  Stay tuned for what comes next in this journey.

Hello old friend!

Well, it has been a while.  Apparently having two kids really does fill all of your time!  The writing went by the wayside and I kind of miss the opportunity to get my thoughts written down.  SO...if you have subscribed to this blog and get emails sent to you, you may end up feeling the need to unsubscribe if I get annoying.  ;)  So here is just a bit to get you caught up.

The last time I posted I talked about how I was de-crapifying our house.  Well, guess what....still working on my mission to get crap out of our house.  This will forever be a struggle for me.  Confession time.  I wouldn't say that I am a certified hoarder, but it certainly has become a hobby.  I save things for the "what if" or "I might" times in life.  I am still working on letting go.  It is a work in progress.  My mom helped me this week to really focus on this goal.  We have about 40+ trash bags full to go to either the garbage, donation center or to my sister's house.  (Giving my sister all of the clothes that my kids have outgrown.)  Lots has left the house and it feels awesome!!  I still have areas to work, but it has been an extremely productive week.

Along with de-crapifying our home, comes sorting through all of my clothes.  UGH!  This kills me every time.  I have a strange emotional connection to my clothing.  I continue to hold on to clothing as my weight fluctuates.  Just in case I am back in that size, whether it is smaller or larger.  I have started working with a doctor to help me focus on becoming healthier.  I meet with him every other week to discuss changes that I need to make and track my progress.  With his help, I am down 2 pant sizes since Christmas 2015.  AND I don't plan to get back into those sizes.  SO...reluctantly I have gotten rid of 2 of the 6 sizes in my closet.  (Yes....I practically have a clothing store in my closet.  6 sizes worth!!)  I did also get rid of some of the other items in the remaining 4 sizes and kept only some items as I hopefully fit back into those sizes throughout this journey to getting healthy.  This is a huge struggle for me.  Has been my entire life.  And I fear that this is a battle that I will be fighting for the rest of my life.  But since I am now closer to 40 than I am to 30, I need to really focus on this journey both for me and for my kids.

So 2016 is still about de-crapifying my life.  My home.  My closet.  My diet.  My health.   My insecurities.  My self-doubt.  All of it.

Here's hoping that the second half of 2016 continues in the same direction that the first half started. Stick around if you want to see where this journey takes me.