Vacation

The first 6 months of 2019 were not my favorite. Lu’s medical concerns were the first and foremost cause of stress, but the tension took an emotional toll on all of the rest of us, too. We have been having a rough time.

After the lumbar puncture results did not turn up anything helpful, and our most recent specialists have thrown up their hands, I am taking a break from it all. It is unsustainable to constantly chase new and different opinions, and the time and energy to find new doctors and go through appointments and invasive testing was making everyone in our family miserable.

So for now, we are done. We have seen a dozen+ doctors, gone through countless blood tests and ultrasounds, a CT scan, 2 MRIs, and a lumbar puncture. Lu has had so many neurological tests that she knows them by heart and starts the actions before the Doctor of the Day even asks.

Her leg, which started all of this off, has healed. Her neuroopthalmologist has recommended eye surgery and we will be pursuing that in the fall, allowing her freedom to swim and be active in camp this summer. The final symptom remains unchanged despite So Many appointments and interventions – all of which were somewhat torturous and yielded no results. We are taking a break and just managing it day to day for now.

We will not be going on an Eastern US tour to Hopkins or CHOP or Boston Children’s this summer. MAYBE we will revisit it all after eye surgery if that third issue persists; we will need to deal with it eventually, but right now – lacking any reasonable answers – we are tired of chasing answers.

The few weeks since the lumbar puncture as we go to the last follow ups and wind down on doctor’s visits have been freeing. A weight has lifted. We have gone to the zoo and the movies and the beach. I went out for a great night in the city, the kids started camp, and we are hitting the town pools pretty hard. We have all spent a lot more time with friends which is the best. Summer is my favorite time of year and we are all feeling better.

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