Looking MUCH better this week!

We've actually gone to the zoo twice this week and church on Sunday and began bible study on Wednesday mornings!  The steroids are all gone and Jaron is returning to his non-drugged self!  Can't you just see the glow in his eyes?! We are so thankful to see his smile and hear his sweet voice again!  This morning in my small group at bible study, he was talking and I was totally distracted and excited!  His face is much rounder and we aren't sure if it will stay that way or if this is just a sign of the steroids.  He now weighs 15 pounds.   He is having about 3 or 4 spasm clusters a day still and we are most likely not going to get in to see the Ketogenic Diet specialist at OHSU.  His secretary called this morning and said they aren't accepting new keto patients.  I'm not sure if our neurologist will be able to pull strings or the next option is Seattle Children's Hospital.  Many hoops to jump through including our insurance coverage for out-of-state care.  We are just praying for wisdom, we're in desperate need.  Shouldn't say desperate, God knows exactly what is going to happen next and it is in His perfect timing.  Also, we are tentatively being referred to THE doctor of Miller-Dieker Syndrome/Lissencephaly.  Dr. William Dobyns wrote the medical journal with all the current info about these conditions.  He is doing research and has just relocated to Seattle Children's in the last month.  The second geneticist we saw last week is not sure why Jaron's liver enzymes are elevated and his CPK level suggests possible muscle damage.  He is wondering if Dr. Dobyns has seen any other MDS patients with these results and if so, what he did about it.  If he has not seen it before, then it may not be beneficial to make an appointment with him.  Apparently, Jaron has a very large deletion of his 17th chromosome and they are wondering if this could indicate other conditions.  We may never know the cause for the liver and muscle levels and we need wisdom to determine what steps to take, ie. liver biopsies, ultrasounds, kidney flushes...  For now, we will get his blood drawn again in a month to see if anything changes.  While he was on the round of steroids, the levels dropped drastically.  I am praying that they just stay normal and we don't have to worry about all these other tests.