Back at Nemours

Sean and I are back at the Nemours children's hospital in Wilmington, DE today to meet with a person from Ryan's treatment team. As we sit in the lobby, it's hard to not feel so grateful for the health of our children....In the words of Forest Gump, 'that's all I'll say about that.'


Today was another step forward in Ryan's treatment plan. We met with the person that pretty much plays the role of Patient Navigator and Patient Consultant. (My terms, not her's) She was extremely helpful in explaining the treatment process for Ryan.

Her Cochlear Implant (CI) treatment team includes two Otologists (i.e. Surgeons), the Cochlear Implant Coordinator, three audiologists, a researcher, two speech therapists,  and a  social worker.

Her panel of tests for CI candidacy are as follows (deep breadth):

• Unsedated ABR (2 of them)
• Hearing Aid fitting & subsequent evaluations
• CT Scan 
• MRI Scan
• Sedated ABR
• Speech / Language Eval-- threshold
• Genetics Consult
• Opthalmology - Vision Screen
• Pre-CI Therapy-- speech perception test battery
• CI surgery
• CI Initial Stimulation
• Ongoing Speech / Language Therapy-- two 1-hour appts each week

So, with our 'Patient Navigator' help, she'll set up all the appointments for Ryan.  She set a target date of 9-months for Ryan to have CI, assuming that (1) hearing aids provide no real hearing for her and (2) her auditory nerve is anatomically correct.

To say the least Sean and I were a bit overwhelmed, but at the same time so thankful to have some kind of plan for her.  The target date for CIs is 9-months, which would be the beginning of May.  After the surgery, there is a 3-week window before she receives initial stimulation, so I'm guessing she'll be able to hear around the beginning of June of 2013 (yay!)  Then begins the true test-- learning of language.

Language is a whole other subject for another time.  In the meantime, Sean and I are moving on from grieving to fixing.  We are looking forward to all the steps in the right direction for our baby girl.