The longest wait. EVER.

I went back to work the next day (April 18th) and worked through the weekend.  Both my parents and Taylor's were gone Friday/Saturday and it was a really long 3 days for Taylor and Oliver.  At some point, the backwards slide seemed to stop.  At his the worst point, Oliver could barely swallow and hold up his head, let alone sit, stand, walk or talk.  We waited SIX days before we were finally admitted to begin treatment.  It was just about all our patience could take, knowing we had a plan, but couldn't execute it.  We remained prayerful and thankful for all the prayers that were covering us in peace.  We needed it!

We fought the good fight with insurance.  Taylor was able to reach out to some friends and get everything cleared with BC/BS to start treatments.  However,  for some reason, we were unable to schedule the inpatient stay that would be required to train us how to give Oliver's injections of ACTH.  After further investigation, we discovered that our prescription coverage is separate from our medical coverage, despite paying only one premium (name left out just in case they are reading....we still need them to cover a lot of treatments!) .  The Company refused to fill the script without a letter of medical necessity from our Dr (the vials of ACTH gel cost $28,000 each and Oliver would need 6 for his first month of treatment), but they did concede that they would fast track the approval once they received it.  Dr Leber wrote a letter several pages long (I think I heard 8 pages!), but the Company still required a peer-to-peer interview before approving the treatment.  Thankfully, the company that produces ACTH and NORD (National Organization for Rare Disorders) have a compassion program that helps families with initial shipments of the drug until insurance can be persuaded of the medical necessity.  In some cases, they pay for it indefinitely if families are uninsured or underinsured.

As soon as we had the shipment of the first vial scheduled, we were admitted for inpatient treatment to begin.  We anticipated a 24 hour stay.  The nurses would show us how to give the injection and then watch us give the second dose.  We were surprised to find that Dr Singh (Dr Leber's counterpart on the neuro-service) had plans to initiate all of Dr P's protocols and that our stay would last 4-5 days.  We were thrilled, but unprepared to say the least....and so the next whirlwind began....

April 4th-  

trouble waking from his nap...

in retrospect, you can see his eyes doing some funny things

and he had some clumsiness at this point.

We took him in 3 days later.

 April 12th- 

pushing the bike around and talking

April 21st-

Happy and playful (thanks to trazadone),

 but unable to sit up or talk