Friday, May 20

Full of energy!

Ainsley and I went to Office Max earlier this week to prepare some documents for our return trip to Mayo later this month--more on that later....little miss was dancing in the store the whole time :)!  SO. MUCH. ENERGY!

Ryan had to work late one night this week so Ainsley and I cooked a meal for just the two of us.  We turned our Manwich into Womanwich!  It is amazing what a sharpie will do!

Ainsley got a dolphin tattoo mid-week!  She was so proud!

Ains is having a hard time falling asleep these days--I think she may have a slight over-medication of her thyroid meds.  Unfortunately the blood test we did last week to check this only provided results for 1 of the 3 tests they normally run for her thyroid.  I had a very short conversation with her local endocrinologist about this today--I say very short because he was the doctor that was not concerned about the size of Ainsley's thyroid this past fall.  I was informed this week by her Mayo docs who reviewed her TX ultrasounds and Mayo thyroid ultrasound--Ainsley's thyroid was 3 times the size of a normal child.  It is thankfully decreasing  slightly (due to the increase in thyroid medicine).  Her local doctor did NOT want to hear any of these updates today.  He is part of the reason we went to Mayo--because we knew it wasn't right to have her thyroid grow so large.  I told Ryan I am done working with doctors who won't help us navigate Ainsley's complicated medical I moved her endocrinology care to Dallas today.  We meet her new doctor later this summer.  It feels good to advocate for Ainsley and ensure that we have a local doctor who will help us to carry out the Mayo recommendations of checking her thyroid every 6 months via ultrasound to ensure it is not impeding her swallowing, air support, etc.  I likely will add on an endo appointment to our return Mayo trip later this month because if Ainsley continues in this over medicated state her thyroid will decrease in size which is good, but her heart works harder because her body is in overdrive mode with the increased medicine (which is not good).  We need to figure out what to do--thyroid medicine is hard to refine.  She currently takes 1/2 of a 125 mg pill and the lower dose is 1/2 of a 112 mg pill.  There is no in between option (which she needs)...we'll keep working at it!

One night this week Ainsley was NOT falling asleep, so at 9:30 pm we put her in the car and drove her around.  After a while she was wide awake and said, where are we off to?!?!  I stopped by McDonalds and got myself a large diet coke (because I knew it was going to be a long night :) and some chocolate cookies for the 3 of us.


Tired memories, but memories non the less!

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