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We have MRI results, And we are still working to beat ADEM!

Article posted on Saturday, September, 29th, 2012 at 8:45 pm

Is there anything harder than waiting for MRI test results (or any test results) for that matter?  We have certainly been through our fair share of ‘hard stuff’, and while treatment can sometimes be hard too, at least you know you are making progress.  Waiting for test results is like treading water – no progress – no forward motion.

The Thursday and Friday before Neely’s MRI, we distracted ourselves by volunteering and participating in the 2012 Radiothon to raise money for Greenville Children’s Hospital.  Going to events like this one, help Neely to think of the Children’s Hospital as a fun and happy place. I like that she has so many good memories there to help outweigh the bad ones. (It works for me too!) She was thrilled to meet Miss South Carolina and get to try on her crown. (And by the way, over $317,00 was raised for Greenville Children’s this year through the Children’s Miracle Network Radiothon.)

We didn’t have to distract ourselves for long post-MRI.  Luckily, our Pediatric Neurologist is super-quick when it comes to getting back to us with results.  One of the many reasons we are thankful that Dr. Augusto Morales is in our life.  It was barely 24 hours before we got a call and could begin to digest next steps.  And we were relieved to have good news this time!

Neely’s MRI looks very good. I haven’t seen the images myself, but Dr.Morales says there was almost no change at all from her last MRI.  That means, we still have some scar tissue, but we don’t have any recurrence of ADEM, no lesions, no tumors, no inflammation.  And that is a lot of big scary monsters that we get to cross off the list!

With that news in hand, we are now focused on the bad EEG and everything that we can do prevent or avoid seizures and regression.  We have spent this week talking with many of Neely’s doctors and seeking advice.  Neely’s pediatrician is Dr. Justin Moll of Parkside Pediatrics in Greenville, SC and he has been extremely helpful to us. While he is admittedly not an expert in ADEM, he has been helpful in working with us to collect information, absorb the full scope of Neely’s test results and determine the list of questions that need to be asked…and to whom! I can’t begin to tell you how comforting it is to have him just to talk through ideas and scenarios.  If there is one thing I’ve learned throughout Neely’s illness it is that you can never ask too many questions and you can never solicit the support of too many people. 

There are still a lot of things that we don’t know, and we are working on those things.  But these are the things that we are feeling good about today:

1. Neely has 2 laser-focused parents working as her health-care advocates and we will not leave a single stone unturned.

2. Neely has an amazing team of physicians working on her behalf to solve this latest challenge.

3.Neely has a good MRI result – and enough courage and strength to move mountains. She’s demonstrated it over and over again.

4. We are believers in Miracles! There is not a test in the world that can show the impact of prayer and positive thinking. And we believe in Neely.

We’ll keep you updated as we continue to understand the new set of challenges ahead.  Thank you for keeping Neely in your thoughts.

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