Andi thought it would be fun to get up early this morning. She cried and cried. Normally, we let her cry it out and she usually calms herself, rolls over and goes back to sleep. This morning, the cries got progressively more demanding. So, I came up to her room, grabbed her out of her crib, (which instantly stopped the crying), and brought her downstairs to the bed. Normally, she'll curl up with me and go back to sleep. This morning, she wasn't doing that, so up before the crow we were. She asked for water and shunned her chocolate milk, which left me asking, "really?!" Normally, I give her the Ipad when she wakes and that entertains her through the grumps of waking up. Well, the Ipad battery is dead and the charger is over at Grandma & Grandpa's house, to which we have yet to retrieve it. So, without that, I put on an episode of Yo Gabba Gabba! As long as YGG is on, or a Signing Time video, she was fine. But she was easily distracted and whiny, often climbing off the couch, crawling or cruising over to me, and then demanding to be held. After I put her back for the umpteenth time, she pointed to her left ear and cried. Uh-Oh. It was just after seven, so I placed the call.
The foolish woman on the phone said that I should just have the advice nurse call me, and they can redo her antibiotic prescription over the phone & that way I won't have to bring her in when she's not feeling well. I said, 'well, I'll have to bring her in regardless to pick up the script. But, okay.' So, an hour later I was contacted by a Ped's nurse who knew who were are! I knew they wouldn't in any way shape or form send Andi packing with a script without seeing her. Not my girl. So, we were to be seen two hours later. An hour after that call was made, Andi was acting like her usual self again. I got us out the door, and over to see a different pediatrician as our usual Dr. is on vacation. The nurse we saw totally knew us, as she'd seen us in the past. She too knew that Andi is Chani's (our pediatrician's nurse) favorite, and promptly told us that she'll be back 7/1 from maternity leave. The Dr. came in and quickly confirmed what I believed to be true...the ear infection is back (if it ever truly left) and we'd need to get on a different antibiotic. The funny thing is, we knew this pediatrician too, as she once shadowed our cardiologist up at the hospital. It cracks me up how small this world seems at times. Both the nurse and Dr. were blown away at how well Andi is doing. Again, the sentiment I hear from professionals is wonderful, although a bit concerning that they didn't expect her to do so well. Anyhow, we stopped at the burrito stand down the street on the way home because we were starving, and I didn't want to get home and have to make lunch. At home, I sat Andi in her high chair. I cut up her bean & rice burrito and gave her some chips. When she finished, I was checking emails on the computer when I stopped what I was doing, hearing a familiar sound. I turned around to find this:
Least I didn't have to fight her to take a nap today! Sadly, this occurred before I was able to give her the first dose of antibiotic. Oops.
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.
