Wednesday, June 23, 2010

Ethan has a world to his left!


Ethan is smiling even while wearing the annoying neck brace.  He only has to wear it for a week.

Dr. Williams performed a muscle release surgery on Ethan last Wednesday June 16th.  Allen and I both had a lot of "what if" questions about this - could we have done his exercises more often or positioned him better to help with this problem.  Dr. Williams told us after surgery that therapy NEVER would have released what he removed.  We were relieved and just have to move forward with getting him better!  In less than a week, we can already tell that Ethan's neck is improving!  He starts rehab and physical therapy on Thursday, so please pray for effective exercises that will help him gain full range of motion with his neck...and for overall strength for his muscles in his body.  He really seems to be doing great but we still want more for him!

During the same surgery, another doctor took out his g-tube and put in a low profile button.  It doesn't change anything...he is still being tube-fed.  It does make it a whole lot easier to remove WHEN he is eating by mouth.  We are going to The Marcus Center on June 30th for a feeding program evaluation.  We've heard it is like boot camp for "stubborn" or problem eaters.  They have a whole team of doctors that work together to see if Ethan is eligible for treatment.

The third procedure was a scope of his vocal cords.  Dr. Gower DID find a deformity in his vocal cords that seems to prevent them from closing.  We thought up until now it was his low tone that was doing that.  So...what does this mean?  We have no idea!  I'm gathering information and asking questions.  She did mention a very tedious surgery that might or might not help - and we have A LOT more questions about that.

Please continue to pray for Ethan...for overall strength, for the desire and ability to eat by mouth and for developmental milestones to be natural for him to accomplish.  We are seeing definite improvements and progress and that is so encouraging.  It will still be months, possibly years, before Ethan is doing things that Colin is already doing.  For THAT, I ask for prayers for his self-consciousness and self-confidence.  We know he can do it (at least until someone tells us otherwise)!!

I am also asking for prayers for wisdom for Allen and me.  We still have a long road ahead of us with Ethan's healthcare.  He has 10 (at last count) doctors and 3 to 4 therapists.  Allen and I have a committment to make sure we give Ethan every possible chance at living a "normal" life as we can.  We want God's guidance on how to make that happen!