Today.

It is difficult when you think you are at the end of one road, and in a matter of minutes you find out that you are on an entirely difficult road....and you are only just starting out.

How do you reorient yourself from reading epilepsy surgery procedures one minute to researching mitochondrial disease the next?

Its like diving underwater and getting disoriented, and squinting to figure out where the light is coming from so that you can find the way up.

We spent a week in the Children's Hospital doing pre-surgical testing on the Epilepsy Monitoring Unit.  They did an in depth MRI, and 72 hours of video EEG.  It was quite intense, but Brooklyn tolerated it with a smile, as usual.   As I read the manual on epilepsy surgery, I found myself wondering how I would be able to handle brain surgery, swelling, medically-induced coma, a feeding tube, a central line, and the intensive care unit at the same time.  While Brookie has been through most of those things separately, being hit with them all at once would be tremendously intense.

 

However, after reviewing the data, the surgery team came in to talk to us and inform us that epilepsy surgery is not a good option for Brooklyn.  They feel like her issues do not stem from a lesion in the brain, but rather that she has a full-system issue, probably a metabolic or mitochondrial disorder.  Her "seizures" did not generate electrical activity in the brain, but rather are believed to be moments when her body "crashes" and her brain temporarily shuts down due to lack of energy.

This was both a blessing and a curse.  We were thrilled that we did not have to make the decision to put her through neurosurgery, but were frustrated that when we were so close to answers that we are really back at square one.

Mitochondrial disease is extremely rare.  

It is a disease of the mitochondria, which are the energy producers for cells.

If they don't work right and you don't get enough energy, certain areas of your body can suffer.

It is hard to diagnose.  It is progressive, and can be fatal.  

It can effect multiple body systems, or just one.

Some kids work toward a diagnosis for more than a decade.  It can be illusive.

We are so thankful that we have been blessed to work with some of the best doctors in the nation and that we have a team of professionals dedicated to help us to help Brooklyn.

It is frustrating to be chasing a diagnosis, and at times my biggest fear is that we won't ever know what is "wrong" with our girl.  I keep thinking that if I just figure it out, then maybe we can help her more.  So I spend hours reading books and searching Google.  I study her lab values and make phone calls to various experts.  It is exhausting, and I really just would give about anything for an answer.

But we aren't always granted the full picture.  We are given today, and we are to live it to the fullest.

Perhaps our little miracle girl is here reminding us that none of us are guaranteed tomorrow...and that we don't have to know everything... but we are given just enough.

We've been given today.

To learn more about mitochondrial disease, you can visit www.umdf.org