Thursday, December 22, 2016

Kenzie MRI Update

So today was the big day, the day Kenzie underwent an MRI exam to hopefully give us answers or clues to what has been going on so that we can move forward in her treatment and therapy.  Unfortunately it has opened up a lot of unknowns and uncertainties. 

Starting this blog before Kaitlyn was born, I found this a great way to communicate our stories with our distant family members everywhere.  Today I find this to be the hardest blog entry I've ever had to try to put together, so bear with me. 

Following Kenzie's MRI, her neurologist, who came to the hospital personally to view the results and perform a lumbar puncture on Kenzie to get a sample of spinal fluids, brought us aside to talk about an area of concern seen on the imaging.  Luckily 2 great nurses took care of Kenzie and Kaitlyn during this period, they were really awesome.  So in general terms, an area deep in Kenzie's brain appears to be lighting up, the term the doctor used, on the MRI.  At first glance it appears Kenzie has an extremely rare disorder called Leigh's disease. It is a disorder that means there is a problem with Kenzie's mitochondrial system, which affects mainly her muscles and muscle tone, as well as the central nervous system.  Let me stress that at this point in the game there are a lot of unknowns about this.  It has not been confirmed yet as more bloodwork and tests will need to be done with the geneticist and the neurologist to see both if she has it and if so what strain and how severe it is.  So I would please ask that you don't Google or look up this disease, because at first glance it can appear very gloomy and scary. There is currently no treatment for this disease, although research is being done. 

That being said, we want to make sure we are relaying news to all our family so that everyone is kept abreast of Kenzie's progress.  The shock of the day has been absorbed a little, but it is still hard to believe.  If this disorder is confirmed, Kenzie will most likely face a shortened life span.  Unfortunately again without more tests and blood work we do not know what that means, but we are not talking about something that is going to happen tomorrow or the next day.  The doctor was being hopeful and saying she is hopeful that we will still have decades with Kenzie.  SO  that is what we are doing.  Being hopeful, and will take it one day at a time.  Through prayers and family we hope to face this head on, and will put up quite a fight against this disease if necessary. 

The glimmer of light in all this is that if Kenzie indeed has this disease, she is doing way better than anyone should be.  She is progressing with her physical therapy, standing, and working on walking at therapy.  Her speech is slowly getting better, that is more words recognizable.  This disease is usually not a rapid decline, but a gradual regression.  We are not seeing that in Kenzie and so gives more reason for hope.  We don't want to scare anyone with this information but we feel we should be as upfront and honest with everyone about what is happening as the doctor was with us.  We have not told Kaitlyn yet for obvious reasons, and will wait for more information before crossing that bridge.

So again sorry for the information overload, it is a lot to take in.  At this time we ask for your continued prayers and support, as it looks like we are beginning a long journey. 

Love always ..... Kevin Cyndi Kaitlyn and Kenzie

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