Thursday, April 19, 2012

God is moving...

I'm sorry that I've been away so long.

God has been stirring us.

It has been....... Good.  Exciting.  Nerve wracking. Scary.  Humbling.

I have been sharing some of it in "real life" but not sure God has given the "OK" to share online yet.  But soon.

I've been composing that post in my head for weeks.....but no "OK" yet.

So, I will share other happenings here...

When we last took Mags in for scans, we told the Oncologist at Memorial our biggest concern lately was her hearing.  She is doing GREAT in Kindergarten.  However, many of the these skills she started learning before her hearing loss and ... well... as her hearing has slowly decreased over the last 2.5 years she was still learning.

Her hearing is bad.  There are many words sounds that she just is unable to hear anymore.  Like "s" and "t" and "f" and "th" and "p" and ...well you get the idea.  As new concepts are introduced to Maggie it will be harder for her to fully comprehend them ONLY because she isn't hearing ALL of it.

Here is a Link that gives an example of what Maggie's hearing is like:

Hearing loss simulation

If you go down the page to where it says "Hearing loss simulations" - click on 500hz Low Pass.  That isn't exactly Maggie's hearing but it is very close.  Her hearing aids do help - but only a small amount.

She doesn't know what she can't hear.   It has been such a gradual thing for her that she just doesn't fully understand the scope of this hearing loss.

Anyway, back to the docs.....our Memorial doc decided to ask the Riley oncologist if there are different thoughts on how to work with a cancer survivor kid with dramatic hearing loss.  So we got a referral to the Cochlear Implant dept. at Riley.

Do we want Maggie to have an Implant?  I. DON'T. KNOW.  But we want to be able to meet with the pros and find out more about CIs (cochlear implants).  On paper, Maggie doesn't meet criteria for a CI - her hearing needs to be even worse.  If you go back up and look at that simulation it shows a graph - Maggie's hearing is too "high" on the left side.  It should be "on the bottom" the whole way across to be immediately thought of for a CI.

So, all of that to say ... we are meeting with Riley in late May to discuss it all.  She'll have a head CT, a hearing test (audiogram) and orientation and a quick meet with the doc.

As her hearing continues to decrease, it is hard to know how to make decisions.  Do we wait and see how low her hearing goes?  Or do we try to act sooner than later?  Before her education becomes difficult?

Jared's birthday is coming soon.  He is so excited - he wants more Nerf guns.  He already has several.  He and Maggie like to try to ambush Rod and I.  Come to think of it, maybe I should get one for Rod and I...... ;)

God keeps moving and stretching us.  Just got make sure that we move with Him.   More on that later.....