Good News/Bad News

Like many days, weeks, and months, this week has had it's ups and downs.  A couple weeks ago, Avery went in for a BMT follow up, which included immune studies.  Our doctor said Avery was looking great, gave us the green light to begin re-vaccination, approved outpatient therapy instead of home based, and basically told us we could re-enter the world with caution.  We attended church this past Sunday and family Memorial Day picnic on Monday.  Tuesday, the Care Manager from Cincy called and confirmed that Avery's immune studies looked great.  There were a few things not as good as they would like, but mostly it was good news.

Fast forward 24 hours and Avery decided to prove to us that he will do things his own way by spiking a fever.  When it hit 103, I called the doctor who sent us to the ER.  He was admitted to hem/onc.  Yesterday, his fever was up and down, and then during the evening, he had a couple seizures.  He was still febrile through the night, so we're staying at least one more night. He seems to be feeling MUCH better today. 

Kind of ironic that just when we start feeling confident in his ability to handle germs a little bit, he gets sick.  Such is life with Avery; things rarely make sense or work out like they should.  So maybe we'll just slow down and give him a little more time. 

More good news though is that today I signed the last of the paperwork for Avery's Medicaid waiver. Now everything goes to the state, and we just have to wait for them to approve.  This will allow him to carry his own Medicaid/disability secondary insurance as well as allow for in home nursing care.  What an exhausting process, but the end is finally in sight! Also, we had his IEP meeting this week and got all the paperwork ready for him to begin Kindergarten on the fall!

Love my boy and glad he's feeling good right now.

Bethany