The BE Charmer (yes, BE!)

The past several Monday's, we've gone to the gym so I can attend the evening boot camp class.  Each time, Andi has to use her walker on the sidewalk, through the doors, and past the check-in to the Kid's Club - where she plays with all her friends.  Her 'friends' are the adult women working there.  She loves them all.  In any case, the past several Monday's we've attended class, we are greeted at the door by the very large man I wrote about awhile ago.  By very large man, this man is obese.  He's probably the largest person I've ever spoken to.  He's usually completed his workout and is waiting by the front door for a ride from someone.  I've noticed he seems to be waiting for Andi though, expecting her, hoping to see her.  When he gets a glimpse of her coming, he seems to hop up and throw open the door, and encourages her to come on in.  It usually surprises Andi.  Today, like clockwork, he threw open the door with an exuberant 'Hello there!'  Today, Andi gave him a big smile and said, 'hi!'   Again, this man stands at the door, holding it open for several minutes waiting for her, encouraging her, and wearing the biggest smile she encounters.  (This is all in the most non-creepy sense of the description.)

I got Andi checked in and then headed over to the bathroom.  After which, I headed to one machine, as I had a few extra minutes before class started. I sat down at the machine, to hear a PA announcement for me to return to Kid's Club.  I walk in, afraid she's already causing trouble, but am told that Andi just needed a diaper change.  I ran out to my car to get her diaper bag and when I returned the large man was still sitting by the door waiting for his ride.  He stopped me and asked (respectfully) why Andi needed the walker, noting that I'd already told him she has balance issues.  I told him she has CHARGE Syndrome, what it is, and what that has meant for her.  In my opinion, he was dumbfounded, impressed, and humbled all in one.  He went on to tell me that he was having a really bad day, but he saw Andi and she just made his day so much better.  He said that she really has touched him.  Knowing her story seemed to give him better perspective as well.  He acknowledged that what she's been through could make his bad day seem so petty.  I couldn't help smile and feel so totally impacted as well. She's helping others just by the mere fight and light within her.  She's a charmer.

At the end of pre-school today, Andi's teacher said she had another great day and that she was so smart.  She asked, 'do you know how smart she is?'  I just laughed, nodded and said 'yes!'  I told Andi's pediatrician about that later in the day and he said, 'was there ever any question?' and I said, 'no, but it's really nice to have others, especially professionals, notice and acknowledge what we already believe to be true.'

So, lastly, Andi went to see her pediatrician today.  Last Wednesday, we ended up at Urgent Care, as Andi pointed to her left (bad) ear and started crying.  It wasn't an 'I'm tired and grumpy cry!'  It was different, and different has always meant some sort of trouble.  It was deemed she had a bilateral ear infection, but that's not why we went to see her Dr. today.  Today was just her yearly 'wellness check' - standard operating procedure.  For people like us though, they see us more often and know us better than the S.O.P.  In fact, they give you a questionnaire to fill out prior to the appointment.  The first question asked if the child has had any surgeries or hospitalizations since the last appointment.  I asked the nurse, from this time last year or since two months ago when we were here last!?   See, we don't fit the usual mold.  In any case, Andi's weight is slowly creeping up, 23 lbs, 13 oz's.  She's 33" long, which is stagnated.  I pointed out that the 'R' is CHARGE stands for 'restriction of growth.'  I mentioned to him that apparently they sometimes give HGH to kids with CHARGE.  So, he put in a referral for us to go see Endocrinology, whom specialize in growth hormones, thyroid, reproductive hormones, & adrenal gland.  Hate to be taking on another specialist, but this is important.  We also got a referral to see the eye Dr. again - as she wanted to see Andi when she was three. I don't even remember when we saw her last, but imagine it was well before her first birthday.   Other than that, her pediatrician was really excited about Andi, especially how chatty she is now.  He said it nearly brings tears to his eyes to see her and how well she's doing.  Andi really does impact those around her, and it's amazing to witness. It's as if she's a BE Charmer.  Not a bee charmer, but a BE charmer - as she seems to make those around her want to BE better, BE more, BE healthier.  Yep, she's a BE charmer.