Another Ethan Update

About two weeks ago Ethan had a series of tests done at Levine Children's Hospital here in Charlotte, NC. Due to his 5-10 second staring spells, the neurologist ordered a 24 hour EEG to look at his brain activity and check for any sign of seizures. Thankfully, this test came back normal. The neurologist who read the EEG said his brain activity looked completely normal and that he encounters lots of children who have these short staring spells which are likely just Ethan taking some time to process what he is hearing and seeing.

For the second set of tests Ethan was sedated and did GREAT with the anesthesia. They did an MRS (magnetic resonance spectroscopy) which measures the chemicals and metabolic changes in the brain. This test also came back normal. The third test was a brain MRI. Ethan has had two other MRIs - one when he was 5 months old and the other when he was 18 months. Both of those MRIs were normal, so we expected this one would be as well. Unfortunately, the MRI was not normal this time. There was atrophy in the center of his cerebellum, which is located in the back of the brain and plays and important role in motor function, balance and coordination - all areas where Ethan struggles the most. The neurologist believes that because the other two MRIs were normal and because of the location of the atrophy (the center of the cerebellum), this is something that will likely progress. There are a number of genetic conditions that could be causing this atrophy and she will be testing him for these conditions. If this is a genetic condition, stemming from a recessive gene from each of us (which is only one possibility - another being that it was just random and unexplained), then baby Veeck has a 25% chance of having the same condition. She will also take a look at the other two MRIs to confirm that they were indeed normal. Our hope is that maybe the other MRIs were not normal and this atrophy was always present and has not progressed. Depending on the condition that is causing the atrophy, she believes Ethan could either continue to improve very slowly, stay the same or begin to regress. Since he has always slowly progressed, our hope is that this will continue. The new atrophy, however, is not a good sign.

This was definitely not what we were expecting and it has been pretty hard to take all of this in. We have to remind ourselves, though, of what a beautiful, smart and happy little boy Ethan is. We have to remind ourselves that the rest of his brain MRI, the MRS and the EEG were completely normal. And I always try to take my friend Annie's advice, remembering that Ethan is the same little boy he was four days ago, before I knew anything about these results. Please continue to pray for Ethan and the results of the next set of tests, which will be done over the next 6 months or so. Please also pray that baby Veeck is not affected by this possible genetic condition. We are so thankful for Ethan, for the joy and love he brings, for all the things he CAN do and the ways he amazes us with his strength and perseverance every day.

Here are a few pictures of our stay at the hospital. My sister recently started an internship at the same hospital, so she hooked us up with the hospital music therapist. She helped break up the day and Ethan loved playing all her instruments!