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letters for luke & notes for noah
Showing posts with label cochlear implants. Show all posts
Monday, April 14, 2014
What a difference a year makes
When I look back at my blog over the last year, I realize how much fear
I had when I found out Noah's hearing had decreased to a level of
deafness.  I can scarcely remember those days without my eyes brimming
with tears.  It was, hands down, the hardest period of my life thus
far.  The biggest and hardest part was just NOT knowing what the future
would hold.  The unknown is scary.  Well, I feel compelled to write
again today because I hope that someday the parent of a newly diagnosed
deaf child can read this and see the growth and transformation a year
can make.  In the course of the last year, Noah went from having a mild
hearing loss in his L ear and no loss in his R ear to a profound loss
in his L ear and a severe loss in his R ear.  We have gotten hearing
aids, a cochlear implant, started preschool, continued with intense
peech therapy, are learning a new language (ASL) and had another
palate surgery.  It's been a lot.  An overwhelming amount actually.
BUT, I've accepted it.  I've come to terms with it.  I've embraced it.
Don't get me wrong. There are still times that it hits me like a ton
of bricks, but those times are fewer and further between.  But then
there are those times that I see Luke and Noah whispering to one
another as they play Legos and I'm so overcome with gratitude that I
can barely stand it.
I met with Noah's speech therapist last week to discuss where he's at,
where he needs to go and how we're going to get him there.  Noah's
annual IEP is coming up in May so I wanted the latest numbers fresh in
my mind.  Our end goal is and always has been that Noah will mainstream
with the rest of his peers into Kindergarten.  Accommodations will need
to be made, but that he will enter the same Kinder that Luke did and
continue thorough there.  I know that this is going to come across as
'braggy' but it's my blog, so who cares.... Noah's auditory,
articulation and speech is all WITHIN NORMAL LIMITS for a typical
hearing child of his age.  I'm just so proud of him that I could cry.
He has worked so very hard and all his hard work is paying off.  So
much so, that his speech therapist said that if next year was the year
for him to enter Kinder, she would recommend mainstreaming!  And Noah
has a whole more year of preschool!
So, if you stumbled across my blog somehow and you just found out that
your child is deaf....I hope that by reading this you can get a picture
of the amazing things that your child can do.  The fact that the grief,
adness and despair that you feel is normal, but I promise you those
feelings will be replaced with joy, admiration and hope.  I promise.
It's hard, but you'll get there.  Feel free to email me if you want to
talk to someone who understands.
Posted by Kate at 9:31 AM 4 comments
Labels: audiology, cochlear implants, deaf, hard of hearing, hearing
aides, hearing loss, Noah, speech and language
Tuesday, October 8, 2013
Hope for the future
We went to a wedding this weekend.  It was JK's cousin's daughter on
his Mom's side (got that?).  As we sat down, the lady behind me said,
"He's has a cochlear implant" about Noah.  I turned around and smiled
and saw the cutest 17 year old girl sitting next to her.  The Mom then
proceeds to tell me, "She is bilaterally implanted".  The girl pulled
back her hair and I saw N5's on her ears.  Noah was overjoyed and kept
aying, "She matches me".  We chatted with the girl for a bit (and JK's
17 year old 1/2 brother chatted her up quite a bit!) and were amazed at
the clarity of her speech.  Later that night, JK whispers to me, "Did
you hear how good her speech was?" and I had to laugh because that was
the first thing I noticed as well.  Instances like this are what give
me hope.  Hope that all this speech therapy, appointments and so forth
will pay off and Noah will be a 17 year old who has perfect speech and
needed minimal accommodations in school.  More about the wedding itself
later when LeAnn gets me some photos!
Posted by Kate at 3:39 PM 1 comments
Labels: CI, cochlear implants, deaf, family, hard of hearing, hearing
aides, hearing loss, Noah
Monday, August 26, 2013
CI updates
Noah has been moving through his CI programs like a champ!  My fears
that he wouldn't want to wear the CI were unfounded.  He asks to have
it put on in the mornings and will disconnect it when the magnet falls
off.  I suppose I was naive in thinking the magnet would occasionally
fall off......that thing is reconnected 50 times a day!
I have noticed that Noah used a plural "s" spontaneously the other day!
I about cried with happiness.  We were folding laundry and one of his
hirts came out and he said, "That's Noah's shirt".  He had the final
/s/ sound on both that's and Noah's!  SO very exciting!
We head back to Stanford this week for our next mapping.
Luke has to be the best big brother ever!  People do stare and look at
Noah and if anyone asks, Luke is quick to jump in with "This is my
brother's cochlear implant processor.  It's held to his head by a
magnet and it helps him hear".  It's so precious.
Posted by Kate at 1:47 PM 0 comments
Labels: audiology, brothers, CI, cochlear implants, hard of hearing,
hearing loss, Lucile Packard, Luke, Noah, sibling of special needs kid,
Stanford
Monday, August 19, 2013
ACTIVATION
Last Friday, we headed up to Stanford for Noah's CI activation.  Since
Noah deafened postlingually, he had already had a significant amount of
access to sound.  Also, he does wear a hearing aid in his R ear, which
provides him  access to sound that way, so his activation was pretty
underwhelming.  It was not similar to the activations that you see on
TV where the child hears sound for the first time ever.
[image.jpeg]
Noah playing the audiology "games" while they test his CI for the first
time
It was switched on and JK and I were taught how to use the device,
which took the majority of the time.  For those of you not versed in
the CI world, Noah's implant will be gradually turned up over the
course of the next 6 months.  On his CI there are "programs" and he is
currently on Program 1.  We will move him up through programs over the
next two weeks.  At that time, it's back to the Audiologist for a
mapping to build new programs.
On a quick side note...we got the results of Noah's Exome
testing....normal.  I don't think that we will ever know the reason for
Noah's hearing loss and cleft palate.  And really, at this point, what
does it matter?  I understand that nothing will restore Noah's hearing,
but I do feel it's important for Noah, Luke, Wyatt, Cayden, Aubrey,
Kyle, Kohl, LeAnn and Nic to know.  For them to be aware of potential
genetic changes that their offspring may have.
Thus far, Noah (as always) has been a trooper.  He keeps his CI on asks
for help when the coil falls off of his head.  I am SHOCKED at how
easily the coil falls off.  There are different magnet strengths and we
will discuss that when we go back in two weeks.
I have noticed that now when we are out and about, people take a long
look at Noah.  I can see their confusion as they try and process what
it is on his head.  A few have even asked.  It doesn't offend me in
anyway and I enjoy being able to share with them what a miraculous
piece of technology it is. I do get teary eyed when I think of how
thankful I am for this amazing technology.  It's simply amazing and
life changing for Noah.  I'm so thankful that he has an opportunity to
experience sound again.
[photo.JPG]
Noah's Cochlear Implant--with a Finn McMissile cover
Posted by Kate at 11:13 AM 1 comments
Labels: CI, cochlear implants, deaf, genetics, hard of hearing, hearing
loss, Lucile Packard, Noah, Stanford
Tuesday, July 30, 2013
The BIG day!
It's here and gone.....Noah's surgery went FABULOUSLY!  I don't think
we could have asked for a better experience.
We got to the hospital at 6:00 am and Noah was a bundle of energy.  We
explained to him what was going to happen and I think he understood as
much as a 3.5 year old can.
Ready to go!  My precious little man.
Surgery took about 4 hours.  Dr. Oghalai called us back and told us
right off, "Everything went perfectly.  Noah's surgery was routine and
the electrodes were showing nerve response, which is a good prognostic
indicator of success".  I didn't realize until after we talked with
him, how relieved I was for that part of it to be over!
[image+(2).jpeg]
In recovery.  Notice that Curious George also has a cochlear implant!
We waited for another 2 hours in recovery for Noah to wake up.  He was
groggy and out of it, but HATED having the wrap on his head and the IV
in his arm.  For a while, he had to wear the "no-no's" because he kept
clawing at his incision site.
[image+(3).jpeg]
The doctor did such a great job with Noah's incision and they shaved
only a very small portion of hair
Just a few hours later, he was back to his normal self.  He took full
advantage of the food situation and ordered a steak, green beans,
french fries and of course....chocolate milk.
[image+(5).jpeg]
Can't believe this little man just had surgery!?
Sleeping was hard fought that night, but we were discharged the next
morning.
[image+(6).jpeg]
But I don't want to sleep, Mom!
Noah was ecstatic to see his brother when we got home.
[image+(4).jpeg]
Happy to see his brother!
So, now the real work begins.  Noah will have a post op on 8/9, CI
activation on 8/16 and a mapping on 8/30.  After August we will only be
up at Stanford ONCE A MONTH for the next few months.  What a relief
that will be.
Thank you all for the prayers, good thoughts, kind words and support.
It was much appreciated.
Posted by Kate at 3:05 PM 4 comments
Labels: CI, cochlear implants, deaf, hard of hearing, hearing aides,
hearing loss, Lucile Packard, Noah, speech and language, Stanford,
urgery
Tuesday, July 23, 2013
The day before THE DAY
Noah is enjoying a day in San Francisco with Daddy today going to the
aquarium, riding cable cars and eating Ghirardelli chocolate.  A fun
day before a stressful day tomorrow.
[photo+(1).JPG]
Posted by Kate at 12:44 PM 0 comments
hearing loss, JK, Lucile Packard, Noah, Stanford, surgery
Monday, July 22, 2013
Anxious
So, it's started.  The pre-surgery anxiety has hit me.  It hit me last
night as I tried to go to sleep.  I awoke every few hours and finally
at 3:33 am, gave in.
I got up, packed for JK and Noah (who are leaving this morning for
Stanford--I'll join them tomorrow night), cleaned the kitchen, folded
laundry, watched an episode of Dexter and drank 4 cups of coffee before
work started and Luke woke up.  I can't even put my finger on what it
causing the anxiety, just the permanency of it all and my baby under
anesthesia yet again.  Until it's time to leave, I have a full plate.
Luke had VBS today and then his Kindergarten assessment during my lunch
hour.  I'm working a full day and taking Luke on a date to the fair
tonight.
At Luke's Kinder assessment, he had to draw a self portrait.  I wonder
if he was the only kid that put a large penis on his..... It was not a
proportional drawing!  He also recited his ABC's, showed off his
reading skills, number skills, colors, shapes and handwriting.  Both
Kinder teachers at AACA seem really great and I'm sure Luke will be
happy there.
I'm sure I will DRAGGING by this evening, but hope to get a full night
of sleep to rest up for surgery day and the long drive home
afterwards.
Posted by Kate at 1:53 PM 1 comments
Labels: CI, cochlear implants, deaf, growing up, hard of hearing,
hearing loss, Lucile Packard, Luke, Noah, Stanford, surgery
Thursday, July 11, 2013
Under 2 weeks