Monday, February 29, 2016

An update from Life in the Gray

Life in the gray.  I refer to that phrase frequently because that is what our life had become.  So called answers, end up with very little clarity and yet more questions. Sometimes it's depressing but most of the time,  it's just what it is. It's like we are trying to navigate in a really dense fog, so dense you can't even see much more than in front of your face. So we keep moving,  attempting to navigate and praying we are moving forward but sometimes find out we have just been walking in circle. Nonetheless we continue onward because you never know what you will stumble upon in dense gray fog, some good, some not so good.
So as an update to our journey, almost 2 weeks ago all 4 of us had our blood drawn and sent to the University of Michigan! We won't know anything for quite some time. They actually stated, "a long time," so what that actually means I have no idea because their idea of time is much differnt than mine.  For example,  an urgent appointment is someone within the next 3 weeks.  We have also been warned that this may not provide any answers and if there is an answer,  it may be more gray. So we continue to hope for the best but mentally prepare for the worst.
In the last few weeks Asher also got glasses. The fact that he needed glasses really want much of a surprise, both Bob and I require correction, but what was interesting is the Dr he saw was extremely interested in Asher's diagnosis, as her husband is an animal neurologist and sometimes works to coordinate human doctors with animal scientists for those who have a candidate gene diagnosis!  She then said they would be in contact with our team and try help in any way they can. 
Aside from that,  Asher's hands are still weaker and he has an occasional intention tremor now in his hands.  We noticed it while he was sick with a cold.  His nuero symptoms are always worse when he's sick,  as are most people with neurologic conditions. The plan is to have an EMG performed on his upper extremities when he has the skin patch biopsy done,  as he will need a little sedation for both.  We are just waiting to see if we can coordinate with the researchers in the UK, as legislature makes it difficult to send samples over seas.  The tissue samples will be analyzed here with some help from the pathologist who worked with the dogs.  The question is do we need an additional sample to send to the UK. We would rather to get it all done in one shot.
Big thanks again to all who have shared.  New readers continue to see this around the world and we have had several different contacts of interested parties