Auditory Skills Appointment?

check...

So his audiologist did more extensive tests.  This time with the hearing aids (loaded with brand new batteries).  She talked to him and he was his usual fun self.  She gave him some toys to keep him busy, then beat a drum just behind his head. Nothing.

"Yea...", she said, "...He's definitely profoundly deaf."  Well, we knew this, right?

She quizzed him on pictures, gave him instructions on making sounds like, /b/, /p/, and  /sh/.  He did very well-which again, we already knew he would.  Then she informed me that the whole team has already unanimously approved him for surgery.  She told me that Dr. Stewart, his surgeon, is eager to do it asap.  When the coordinator asked when he wanted to schedule, his words were something like "How about now?!"  I am told that the administrator will be calling me to schedule surgery any day.  Woo hoo!

Now, here is what I am told about the cochlear implants:

~it is an outpatient surgery with little risks (whew)
~kids normally bounce back quickly after surgery (whew, whew)
~they will be turned on 1 month after surgery-a little at a time (bummer, I'm excited).
~not to expect a whole lot at first, as it takes babies at LEAST one year of hearing sounds (life) before
  they even speak a word.  For Jace, maybe the same.
~given Jace's assessments, and the determination from his team, his teachers, and us, he will more than  
  likely beat the statistic of deaf kids graduating high school with a 4th grade reading level(LOVE THIS-
  but I'm getting ahead of myself, as usual.)
~it is NOT a cure to deafness, but rather a tool for learning within the hearing world.  But, I have said
  before, I embrace his deafness.  We will always sign when speaking so that he may have complete  
  understanding without frustration (hopefully).

Next Monday are his final appointments.  The psych eval and the device discussion. I am quite sure that I will learn much more along this journey.  As I do, I will post!

Hearing Aids!

Too bad he still hears nothing!  But doesn't he look so cute????????

His audiologist says they are turned up as high as they can be--That he has a teeny-weeny chance of hearing SOMETHING....but after her testing he didn't respond to any sound.  He has to wear them every waking hour, just in CASE he may hear a certain sound.  He may need to 'learn' to hear.  We will see....all of his team ADORE him...even the surgeon.  How can they not?

Next week more testing...will keep you posted!!!!

Cochlear Process Update

Just some updates on where we stand before Jace is scheduled for surgery.  We've already had the CAT scan and sonogram at JHU.  His surgeon thinks is a perfect candidate for CI. He thinks Jace was probably born deaf.  There is no proof that he may have deafness due to any illness or accident.  The cochlea is intact and the facial nerve was visible, which is HUGE.   However, he is much older than they would have liked to begin such a procedure.  Drs. like to begin in very early years.  That being said...

2/10/2011    Yesterday Jace had a speech evaluation at Hopkins.  In a quick assessment from the speech therapist, he scored about that of a 5 to 11 month old.  This is mostly because he's never had any training in speech therapy until he came home.  He will need lots of speech therapy, which he gets in school.  This doesn't bother me at all. In fact, I'm up for the challenge.  And so are his teachers.  Since the start of preschool in September (only 3 days per week from 9-11:30) he can pronounce letters /b/, /p/, /m/, and short vowel sounds like  /u/ and /o/.  Lots of reading and signing are helping.  Remember, he only came home in August--with NO signing.  Now?  He is learning so fast that his teachers are surprised.  This boy is SO clever!

These are the upcoming appointments:

2/15/2011      Hearing and aid testing (won't work-for ins. purposes only)
2/21/2011      Auditory skills
3/01/2011      Testing and device discussion
                      Psych evaluation
On 3/8/2011  CI team will meet and discuss all results together, opinions, and surgical procedures.  
                    
After that he will have his first side scheduled for surgery.  One month after healing the device will be turned onto a very low setting.  We go back to Hopkins weekly to turn the volume up.  It is a slow process which will take a lot of patience.  And prayer.  After a month or two of weekly visits, if no complications, then we go 1 month, 3 months, 6 months, 1 year.  If all goes well, the next year he will have surgery again on the other side.  Sounds simple, right?  HAH!  We're going to find out.

Off to read to my clever boy...

Bringing Home Jace

Dear Jace,

 You have been home for six months now.  The time sure has flown by.  Not only have you grown leaps and bounds in these six months, you also have shown us your sweet, happy nature and your love.  What a special little man you are!  Oh sure, we have our rocky times, like any other family.  And yes, you are very strong willed...but so am I.  I will not give up on you no matter how hard you try to make me angry (and believe me, you're good at that!).  No matter how many times you 'pee' on me when you get mad, or stick out your tongue when I say 'no'...no matter how many times you give me a nasty look.  I will never stop loving you.  I will never stop disciplining you.  I will never stop teaching you, training you...adoring you.  I am your mother.

 You belong here, little Jace.  God made you for us...in this home...in this family.  United in the foundation of the Lord, here is where you belong.  Whether we are in the car, in front of the tv, arguing over bed time, or when to brush your teeth.  Whether we are at the dinner table, or in the tub...We are one unit, one heart beating, one testimony for the Lord.

 But our testimony doesn't end here.  Maybe this journal will end, but not our story.  You will touch the lives of many generations to come.  You make sure, little man, that you share your testimony.  Share it loud and clear.  You don't need a voice for that, Jace.  Until you show the world who Jace is in the Lord, I'll be that voice.  I am your mother.

The months to come bring more challenges-changes so hard for one little 4 year old.  Cochlear implants will bring a new challenge of its own.  Each step of the way, your family will carry you through it.  You'll never be alone again.  You'll never wonder where the next meal is, who will be taking care of you each morning when you awake.  You're home now-where you were made to be.  And you were made for me.  And I?  I am PROUD to be your mother.