Hidden Beaches and a New Doctor

A hidden beach Mia and I found after her doctors appointment in Portland.

I poked my head into Mia’s classroom in an attempt to surprise her with my presence. One of her teachers told me that she was out on the playground, so I headed down the hall in search of her. I opened the door to the play yard and scanned for my beautiful girl. There she was, doing what she loves most, running around with a smile on her face.

As I headed towards her, I heard her teacher proclaim that “momma is here!” Mia kept running around. I dropped to my knees near the edge of her running pattern and waited for our paths to cross. When she came upon me, she didn’t look right at me at first, but the corners of her mouth started turning upwards. She ran past me a little ways, slowed down, and headed back to greet me with smiles, giggles, and lots of eye contact while jumping up and down with excitement. “Momma is here!” I could hear the voice inside her head shouting! (I’ll fall over backwards when I hear those words for real!)

Her teacher told me of the things that Mia did during the day, and when we got done talking, I asked Mia if she was ready to go. She smiled big, took my hand, and led me back to her classroom to get her backpack. We then proceeded to the car, and while I was buckling her in I told her what our plans for the afternoon were.

A while back, Mia had a renal ultrasound of her kidneys as part of her yearly check up pertaining to TSC. The imaging showed that the number of tumors in her kidneys had increased.Because of this, she would need to be followed by a Nephrologist to help ensure that the ever increasing tumors don’t cause any problems with her kidney function. Today was the day that we would be meeting this new doctor and talking about options.

Even though Mia is still non verbal, I am certain that she understands exactly what is being said to her at this point. When I said we were going to meet a nice new doctor, her facial expression changed from oober happy, to “oh really, that’s why you  picked me up from school?” But when I told her we were going to play outside by the water afterwards, her face went back to oober happy!

I’ve always paired the things that Mia doesn’t like doing, with the things she loves doing. Doctors appointments are rewarded with a new outdoor adventures. Trips to the store are rewarded to Mia by having mom sing and dance to/with her while we’re there, with lots of goofy voices and play. (I’m sure others think I’m nuts when they see me, but hey, Mia loves it, and it keeps her entertained!) General day to day activities that she would rather not do (tooth brushing, hair brushing, dressing, all the things a kid with sensory processing disorder HATES) are all rewarded with tickles, words of encouragement (good job!), and lots of smiles and laughs!

Mia enjoying the sea breeze in her hair!

Eventually the “dislikes” became tolerable, because Mia started to realize that there was always going to be something fun involved, or happening shortly thereafter. This trip was no different. We parked in the parking garage and headed into the building. Mia again chose to ride the elevator, leading me to them as she pointed my hand in the direction of the buttons. I showed her which one to press, and she did, lighting up it’s circular plastic cover. I am still in awe of her sudden fascination with them, as I cringe (quietly) as we step in through the doors that close slowly behind us. “We are headed up Mia”, I say, having her press the number 3 button.

When we got into the office, Mia ran around and giggled while I talked to the lady at the front desk. I looked at Mia from time to time to make sure she wasn’t climbing on anything that she shouldn’t be. I thought of this task just a year ago, how if we walked into anything that even resembled a doctors office (or the parking lot of her pediatricians office), a tantrum would ensue. Now though, it was second nature to her. Partly I’m sure, because she is realizing that this is an unavoidable routine. Partly, I hope, because she associates the fun things we do as being intertwined with the not so fun. Either way, it has been a huge leap of progress on her part!

The visit went well. The doctor told me that her kidney function was fine so far. When I asked about the Afinitor to use to keep the tumors at bay since they are increasing, she disagreed that it should be used at this time. Her reasoning's were that this drug had never been tested on kids (which I am looking back into, because I was certain that the trials done in the past involved people of all ages), and that we should wait until one of the tumors reached at least 1 cm in size before starting this drug. She noted that typically, nothing is done until a tumor reaches the size of 4 cm.

Really?! Here was this drug, that had hopes of saving kidney function with the shrinkage of the tumors that are there, and you want to wait until they get….BIGGER?! I was irritated to say the least, but we have an appointment coming up at the end of August with the TS Clinic in Boston, so I will be getting their opinion when we go down.

We finished up with the doctor and went back down the elevator. Mia managed to push all of the buttons on the panel this time, so we stopped at every floor on the way down. She looked up at me every time the doors opened, as if to ask if this was our stop. When we got to ground level, I said “go Mia go!” and she bustled off the elevator and to the door of the parking garage, waiting for me to open it for her and to lead her back to the car.

Now we were off for "reward time"! We headed in search of a not so crowded beach, and happened upon this little one. Mom’s navigation skills on this trip were lacking, but Mia liked it here. She ran around in the bright sun for quite some time, looking out across the water at the city line against the sky. She kicked rocks and sand as she played, and even picked up a seashell that caught her eye as it sparkled with sunlight. We played chase, and explored this little rocky beach from one end to the other. All the while, Mia ran up to me with smiles and eye contact, away, and back again.

It dawned on me then this was her favorite part of anything that we do. Not necessarily the “reward” at the end of it all, but just getting to be with mom, and spending all of this special time together!