December 9th

When Owen was discharged from the hospital at the beginning of November, we left feeling pretty confident we knew what was wrong with him.  Leukodystrophy is a broad term, like cancer, to describe a terrible illness that presents in many different disease forms.  Owen's doctors felt fairly confident he had Krabbe Disease, but we had to wait on a blood test to confirm the diagnosis.  This disease is rare and to get the results the blood could only be sent to one lab in the country.  So we had to wait- and wait- and wait.  It took almost 3 weeks for the results to come back; Owen does not have Krabbe Disease.

Sadly, this in no way changes his prognosis.  Pete and I know that the doctors based his prognosis on the severity of the brain disease shown on the MRI.  Having a name for it isn't going to change what Owen's future holds.  When I look at my baby boy my mind struggles to believe what they are telling me.  He is beautiful. I do realize that Owen does not behave like a healthy baby, he does things that I can only describe as "neuro".  There are ticks and spastic movements, the out-of-your-mind crying,  stiffness in his body, and his eyes will shake in a unusual fashion.  These behaviors are not always present and it is at those times that my mind wanders and I hope, and pray, and wish.  What if they got it wrong?  Maybe he really isn't as sick as they originally thought? If only it was an infection in his brain and a antibiotic would make it all better.  Or let him still have his 'neuro' behaviors, let him be a special needs child, let him live.

Tomorrow is a day that will hopefully provide us with some answers.  It might even allow Pete and me to take a full breath again after weeks of holding it in.  Owen will be returning to Children's Floating Hospital to go under PICU sedation.  He is going to have another brain MRI, a lumbar puncture, blood drawn, and a skin biopsy.  The tests will be run again and this time they are looking at the rarest of the rare diseases.  Pete and I would love to know what exactly is wrong with Owen, but we can live without ever having the answer.  This is the end of testing for him unless his doctors can convince us more is necessary.  I do not want my baby to become a pincushion- especially since in the end it isn't going to change anything.

Knowing what is wrong with Owen would allow us to test Ellie.  We know this is genetic and is a problem between Pete and me.   It would also give us a chance to have more children in the future- they would just take out the faulty gene and that would be the end of it.  Imagine.  Neither of these things have to happen.  They have assured us that Ellie would already be showing symptoms if she was sick like Owen.  If we are not blessed with any more biological children then we have plenty in our lives to be thankful for.  We just want Owen's time with us to be peaceful.

The MRI is the real test we are waiting for.  This will be compared to the one he had done at the beginning of November and will tell us how rapidly the disease is progressing. It will hopefully give us some answers on how long we have with Owen and that is all we really need to know.