I’m sure if you haven’t run into us just yet you’re wondering how our week went and more importantly what the outcome of visiting Children’s Hospital in Little Rock was, well good thing because I am here to inform you.

First off I want to send my appreciation to EVERYONE that sent us messages of support!  I was taken back at how many people had us in their thoughts!  Thank you, your support really means a whole lot to our little family!

TW took a half day from work which left me frantically scurrying about the house making sure I had packed everything we needed along with getting our little guy all ready to go.  I wanted to make sure I had my list of questions, all the paperwork from previous Dr. visits, the list of medicines he was currently taking, etc.  So then on top of all that TW calls me to ask if some random guy can come to our home and retrieve the freezer we had listed on Craigslist……not something I like to do without my husband home with me, let alone the fact that I was supposed to be leaving out the door in 30 minutes, but I said sure why not hoping to use the cash for our gas on the way down there.  In my mind I was preparing all the things I would do and say if it were the case that he wanted to come in our home and steal our possessions or perhaps try to murder me, you know all those crazy thoughts that run through your mind because of everything you see on the news.  (funny side note:  I planned on bartering with him if he wanted to steal my iMac…….”please don’t take my computer…..there’s a diamond necklace and earrings instead, oh and I’ll throw this ring in there too!”  (pathetic).  Sure enough random guy doesn’t show up until I’m practically out the door, ugh, but after sizing him up he seemed safe.  I decided I didn’t have time to wait around for him to load this freezer into his truck, so I locked our door and headed out.  I called TW and told him I left random guy at our house and I hoped my computer was still there when we got back.  This dumb freezer business was the last of my concerns at this point.

Ok so I head off to get TW from work and we start our trek down to Little Rock, Titan decided to be a bit fussy needing some attention which his daddy gave him in the back seat while I drove.  This didn’t lead to the conversation time I expected to enjoy with my husband before we arrived, but eventually Titan would fall asleep and TW crawled into the front seat with me!  Yay I was excited, until he reclined his seat and settled in for a nap.  All alone driving down the road my mind began to race and rethink all the awful things I had read about this disease my son has.  As I arrived in Little Rock and found Children’s Hospital all this time of being alone in my thoughts just poured out.  I started crying (I’m not a big crier) but I think I was overcome with stress and emotion of what I imagined would happen here in my head.  Maybe this little breakdown was good for me since I became a determined momma as I walked into that Dr’s Office.

We checked in, sat around in the waiting room for a while, then were called back to our room, spoke with a few nurses, took pictures of Titan, and finally were greeted by this amazing Pediatric Dermatologist who walked in, took a peek at him and stated he had Diffuse Cutaneous Mastocytosis.  He then asked his nurse to bring me some information and that he would see us in a few months.  I sat there thinking there is NO way this man is going to walk in for 5 minutes and send us home….I drove 3 hours one way just to get here!!!  So I said “wait a second, I have lots of questions for you”, his response….. “ok let me go visit this other patient and I’ll be right back”.  I’m in the service industry and was a little taken back by those words, but I blew it off thinking that a hospital setting was a bit different and you get seen by severity rather than how long you’ve been there.

Once the Dr. came back in we spoke for a long time, leaving me much more pleased with this whole experience (when we got back to the car we had spent a total of 2 hours there). We are very fortunate to have this Derm.  He was very laid back about this whole disease thing, in fact he even opted out on calling it a disease and insisted it was a “birthmark”  I liked that terminology much better!  He basically told us to not put him in a bubble and that we will just have to figure out what his triggers are and avoid them.  He said you can still rough house with him, maybe just not as hard.  I can’t describe how much comfort I felt having his professional opinion.  The Allergist we visited sent me into freak out mode when he mentioned that we may want to consider signing up for air evac!!!!!

So all in all Titan’s future looks like this:

He’ll be on several histamine medicines

He’ll occasionally break out in blisters

We will be making bi monthly trips to Little Rock

I’ll have to be crazy mom and know all the medicines he has to avoid in case we ever need to make a trip to the ER

I’ll have to be crazy mom and tell people that are wearing perfume that they can’t hold him

We get to buy expensive baby wash and detergent!  Oh goodie.

He will hopefully outgrow this by 12 years old if not sooner

He may just have to be a swimmer until then?

“Hi from Children’s, I’m doin good!  I love my yellow gown!”

If you have any questions please feel free to ask!

Enjoy!

-erika