Not The News We Were Hoping For...

It has taken us a while to write this blog, becuase we've been reeling. The results of Oliver's spinal tap revealed elevated levels of lactic acid. His level was 3.1 and the acceptable range ends at 2. The neurology team has diagnosed him with Mitochondrial Disease. Here is a link to a helpful FAQ from the Cleveland Clinic. There is still much we have to wait to find out including what kind of Mito he has. The working theory (and this IS NOT confirmed yet) is that he has MNGIE. So little is still known about Mitochondrial Disease, but it is progressive with no cure. We know there will be suffering and discomfort and a very difficult road ahead. 

There is some small relief to finally know what is making his body deteriorate like this. It finally all makes some sense. I knew back in October something very bad was happening. At least with a diagnosis we can attempt to slow or (for a time) reverse what has happened. I have already spoken with another Wilmington area mom with a kid with mito. She was encouraging and I felt slightly less overwhelmed after a long talk with her. 

We feel like we have won a reverse and cruel lottery. Tuberous Sclerosis is rare, and Mitochondrial Disease even more so. We have so much to learn about this, and have to try and wait for final confirmation from the genetic testing and mail away lab work on the details of Oliver's condition.

So for now we hope to head home tomorrow or Friday, and work hard on getting him to gain weight. If he has MNGIE one of the life threatening issues is losing too much weight. He has lost 20% of his body weight since getting here so we hope to pack on the pounds. 

We have decided we won't send him to school right away. We'll be focused on feedings, therapies and getting back into a routine at home and work. Our church has already handled weeks and weeks of meals for us. Thanks to some of you we have months worth of Starbucks drinks. Friends took down our Christmas decorations and tidied up our home. We feel loved by and cared for by you, our sweet friends and family.

Our hearts are really broken over all this. Our nurse just prayed for us and we stood around the dimly lit room weeping, our tears falling all over Ollie's bed. The staff here has been gentle, compassionate and encouraging. They keep complimenting us on our parenting/caregiving and cheering us on, which helps on days like this. 

Right now, Oliver is playing on his iPad, and every once in a while looks over and smiles at his weepy and exhausted parents. Although skinny and sometimes in pain he has remained an overall happy boy. We can't wait to get him home and away from needles, parades of med students and endless procedures. 

Oliver got a few bedtime stories from Aunt Holly last night. Skippyjon Jones is always a favorite. He has also enjoyed being wheeled around the 6th floor unit in this too tiny toddler car. 

Taking a joyride 

So in honor of Oliver and in celebration of your healthy body, go live your life well and with intention. Suck every bit of life out of each day you have allotted. 

Life is so precious and so are you. 

So dry your eyes and go get out there...that is what we are going to do!

Go read some books you love, spend time with the people that make your heart happy, and if you can find the time, go for a joyride. Because no matter where life's journey takes you, there is always a little joy to be found. 

________

And finally a quote I return to over and over from Anne Lammot:

"Oh my God, what if you wake up some day, and you’re 65, or 75, and you

never got your memoir or novel written; or you didn’t go swimming in

warm pools and oceans all those years because your thighs were jiggly

and you had a nice big comfortable tummy; or you were just so strung out

on perfectionism and people-pleasing that you forgot to have a big

juicy creative life, of imagination and radical silliness and staring

off into space like when you were a kid? It’s going to break your heart.

Don’t let this happen."