MRI results and a few other updates

Samantha had a brain MRI a couple of weeks ago.  She did well through the general anesthesia and seemed back to her typical self by the end of the day.  MRIs are not my favorite thing to have done.  In fact, I hate them.  It's hard to read about and see that your child's brain has things going on that aren't quite right. The brain, as we all know, controls everything there is about a person.  Personality, health, vision,  hearing, swallowing, breathing, living etc and so forth.  In addition to knowing that your child's MRI doesn't look like a typical MRI, it is especially hard to know that new MRI looks worse than the old one.  So, needless to say, in the weeks prior to and after any MRI, I struggle a bit more than usual.

To give a history of Sam's previous two MRIs---they were done only 4-5 months apart and the 2nd MRI looked worse than the first.  It was the first absolute proof we had that this "thing" going on was progressive in nature.  When things went horribly wrong this past February, we declined to get an MRI.  Actually, at one point I think we agreed but then it didn't work out with scheduling and we didn't think it was important enough to have her sedated yet again for a test that wouldn't change what we were doing at the time.  So, this most recent MRI was 14 months after her last one.  And, about 7 months after starting EPI-743.

The results were about as good as we could hope for, given the nature of Leigh's disease.  The lesions in her brain stem area actually looked smaller and "less bright"-which is a very, very good thing. That is most likely the reason she is no longer on the vent.  However, there were new lesions in her basal ganglia area that were not there the last time the pictures were taken.  The new lesions probably explain why her right hand is fisted way more than it used to be. (Her right side has always been slightly more impacted than her left, as the left side of her brain is more impacted when looking at her MRIs).  But, as it was so long since her last MRI, those lesions may have been worse at some point and also gotten better.

We've been told that lesions can sometimes "come and go" with Leigh's disease. Therefore, it is still unclear how much impact EPI-743 had on that specific thing. However, we've also been told that when children get as sick as Sam did in Feb., it is sometimes possible for them to get better, as she did.  But, in general, the child's new "baseline" is not quite as good as it was before.  That is absolutely not true in Sam's case. She is doing as well as she did prior to getting really sick in February. And, perhaps that is where EPI comes in?  It is too soon to say, but I plan on keeping her on EPI as long as we can, if not forever.

In other news, I think we have decided to at least wait until after flu season before attempting to remove the trach. So, nursing care and suction machines will continue to be in our short-term future.

Our girl has outgrown a 3rd g-tube.  Therefore, we have stopped her overnight feeds and replaced them with water for now.  If she begins to lose weight, we would absolutely add back in the feeds. For now, she gets 1200 mls of water through the tube each day, in addition to all of her meds. As I  have said before, the g-tube will most likely be around for a long time, if not permanently.  It is so essential to her hydration (and nutrition if/when she needs it). Not to mention we no longer have to do a sing and a dance (literally) each time we need Sammy to take a medication. Now she helps "push" her meds and has a good time doing it.  Long live the g-tube.

I will try to update more when I can.  Thanks so much for reading.

Until next time,

Monica