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Hear We Go! The Adventures of Butters
Sharing my trials and tribulations of helping our infant son to hear
and navigating our way through EVA/LVAS and Mondini's Syndrome.
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Sunday, September 13, 2015
Going Into Retirement
It's not just a matter of keeping up with this blog (although I find it
very difficult to do so lately), it's the whole process of speech,
language, etc. that we engage in on a daily basis that Bud has finally
gotten the hang of, that I just simply feel as if there's not that much
to post about anymore.  We still have our articulation issues, but he's
making sentences and major progress week to week.  This year, he goes
to an in-home day care three mornings a week, which has helped him
ocially and in the language department.  There is a wonderful
preschool curriculum there as well.  We have also added another speech
preschool the other two mornings a week along with an hour of speech.
After having a bad experience with a speech therapist who only wanted
to emphasize sign language soon after moving to Maryland, along with
about seven months at another speech facility which wasn't bad, but we
weren't getting anywhere, I finally found a wonderful speech therapist
who specializes in auditory/verbal therapy.  It really does make a
difference.
Bud has made major strides in his language and we couldn't be happier.
He may not perform as well as his hearing peers or even another child
of his age with cochlear implants without Mondini's Malformation, but
he has come a very long way.  There's still work to be done, but we are
on the right path.
I'm "retiring" this blog because I felt the need to reach out to other
parents going through our situation.  I hope that I was able to help
and to be a source of information as well as someone who could offer
upport.  I feel that now, with Facebook groups, and other internet
resources and groups, there are other people out there as well as
online magazines, that can offer much more assistance than I ever could
have.  This blog was also to be a support system of sorts for myself,
especially in the beginning when we found out about Bud's diagnosis.
Even though I still have those days where I'm a little dejected over my
on's "special ears" and how he is now noticing that his ears are
different, or I'm having one of those days where I'm comparing his
language to other kids his age, I no longer have that deep anxiety over
how my child would cope with hearing loss.  I don't dwell on how he got
to be this way, or how I could have done things differently.  I
understand now that there are only so many things that are under our
control.  I'm primarily focused on the little things that we can
control, and being happy.... and most of all, grateful.  Grateful for
the little things, and the big things, such as the technology that has
made it possible for our son to hear.
Thank you to all who have read the blog and kept in touch.  I hope to
till keep in touch with you (probably through Facebook).  And I wish
nothing but the best to you if you are going through this same
journey.  There is hope.  It doesn't happen when you want it to happen,
it happens when you least expect it.
Posted by Eleanor Jones at 3:23 PM No comments:
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Monday, February 9, 2015
Wake me Up When February Ends
I simply want to hole up like a bear and remain that way until the
twenty-eighth (or twenty-seventh. I never keep up with Leap Year) of
this month.
You see, February has been the month that I have always despised more
than any other month of the  year.  I think it started in junior high
with all that Valentine's crap.  I really shouldn't feel this way.
After all, Bud's birthday is in February, but so many bad things have
happened or seem to all happen in February.  And it doesn't even seem
to help that it's the shortest month of the year.
February's case is not being helped this year since it will mark the
first year of my dad's passing and that has been weighing heavily on my
oul.  It's taken me exactly a year to even start to accept that he's
not coming back.  There are some days where I question if his illness,
days spent as a kid with him helping me with my homework, him walking
me down the aisle, even happened or if it was somebody else's life.
That's my new issue with February.
Then February turns around and tinkles in my Cheerios: the whole family
has been sick with a respiratory thing and it leaves you guessing as to
whether you will ever recuperate.  Bud has had colds before, but they
have always been short-lived.  For a NICU baby and for also still being
underweight, he has always seemed to be a pretty healthy guy.  But this
thing has really knocked all of us for a loop, and Bud is trying very
hard not to let this thing keep him down.  Just when we believed that
he was getting over it - head is less stuffy, cough doesn't sound like
a horse with tuberculosis, he wakes up at three in the morning (nothing
good ever happens at three in the morning) sounding like that horse
with tuberculosis.  And I just knew, at three in the morning, that I
would be taking him to the clinic - not as early as I had expected
ince he slept in, but I knew.
I got him to this super great children's walk-in clinic (we had been
there once before) and we waited to be seen by the doctor.  She was
fabulous.  I immediately told her that I was probably overreacting but
because of his "ears" I didn't want to run the risk of Bud getting an
ear infection.  I was feeling pretty confident since I always take him
to get his ears checked out at the end of a cold, but something in the
back of my mind said not to jump up on my high horse just yet.  Good
thing I didn't.  He has a slight infection in one ear and fluid
tarting to build in the other.  She said that we caught it very early
and that's probably why he had not been complaining about ear pain.  We
got our antibiotics right there in the office.  She wanted to "go ahead
and nip it in the bud," (no pun intended)  and Bud got to play in the
play house (with a working door bell!) while she set up the
antibiotics.  Love that place.   He will be seen by his regular
pediatrician in a couple of days for a check up so we will have his
ears looked at again.  Yes, I realize that seems redundant, but let's
top a minute and talk about the sense of urgency you feel when your
child's implants might be jeopardized.  You never want to waste a
econd to get your child's ear infection cleared up if it's possible.
Let's also talk a second about how we wouldn't have even been able to
move our regular doctor's appointment up to today because it sometimes
takes us two to three weeks to be seen.  Longer conversation on the
travesties of our health care system in another post.  Today, let me
revel in one small victory.
As wonderful as the kids' clinic is, it's torture on the parents trying
to drag their kids away, or at least my kid, from all of the wonderful
toys and the play house with the working doorbell.  I had to literally
drag Bud out of the office kicking and screaming and we lost his
Superman hat in the midst of the melee.  That lead to an unplanned and
much later in the morning trip to Target ("Tahgit! as Bud says) in an
effort to pick up another hat.  We're not finished with winter up here
yet.  I don't even have the energy to get into the "Tahgit!" trip as we
were just going in for a hat and I let him walk in without putting him
into a cart. All I will say is that with the exception of having to
hold my hand until we got to the boys' section, he was free.  He
enjoyed every minute of it.  I did not.
When we got home, he collapsed into a bundle of coughs, snots, whining
and general irritability.  It was an early nap time, and I had to go
back in and help him to settle down to sleep several times this
afternoon.  I slipped back into that old, horrible feeling of "my poor
child who can't hear."  I know, I hate it too, and I hate feeling that
way, but it was a fleeting thought of how a simple cold can become a
much more serious matter for a child with implants.  I hated that he
had to go through all of this. Again.  And I hate that we will always
go through this. Again.
February isn't helping either. It's hard.  It's sometimes one of your
most bitter cold months.  It's highlighted by the capitalists'
obsession with making money off desperate men to please their wives,
girlfriends, whoever, and it brings women and girls to tears if their
ignificant others don't come through, or if they have no one to love
at all.  February feels the need to pull out that poor, fat little
fuzzy groundhog out of his comfy hole in an effort to appease the
masses that winter will come to a quick end.  And every year on
Groundhog Day it never fails when that voice in my head screams "Leave
him the  hell alone!" Seriously, where is PETA?
I have been feeling like that groundhog probably felt.  It's a passing
feeling, it's a phase, but it's also a beaten down feeling.  The
feeling that you just about have everything under control, and then
uddenly, there's more speech appointments, everybody gets sick, and
then there's the first ear infection, warmer temps followed by surprise
winter weather warnings, and then the reminder that you no longer have
your father and you still don't know what to do about it.  It's the
ensation that grips your chest when you realize that technically
you're an adult, but maybe you're just not that skilled at it.  And
that thought is abruptly interrupted by a shrill shrieking of your
three year old letting you know that you damn sure better figure out at
least how to pretend to be an adult.
Posted by Eleanor Jones at 2:47 PM No comments:
Tuesday, February 3, 2015
Speech
Just a quick update since I'm trying to keep up with this blog.  We now
have Bud going to speech twice a week now, so we will see how that
goes.  I do feel it's warranted as he still is not quite caught up to
his peers.  He is just now putting sentences together but some of his
words are still difficult to understand.  But he is still talking a
million miles a minute and always narrating or calling out whatever he
ees.
Some of our new phrases; "Waffles breakfast,"  "Bath then night night,"
You do it."
"Potty Pwactice" is also very popular even though it is driving me
insane with his constantly getting on and off the potty, and "tinkles"
end up getting everywhere.  Not to mention when I think we have it
down, he completely stops.  I'm beginning to think that I will still be
potty training him when he's eighteen.
He also calls me "Momene"  probably because he is always missing that
'm' sound. I'm also lately hearing the phrase, "Momene do it!"
Overall, we're excited about his progress, but I also realize that
preschool - real preschool is right around the corner so I'm admittedly
panicking a little.
Posted by Eleanor Jones at 2:36 PM No comments:
Tuesday, November 4, 2014
"What Keeps You Up at Night?"
This was the last question asked of me during my initial meeting with
the coordinators from the Infant/Toddler program.  They came out to our
house a few weeks ago (yeah, lagging behind on the blog again) to
assess Bud's speech and growth development, and to find out a little
more about what our family's needs would be - which is fantastic - but
I was not prepared for that last question.  My first reaction?  Uhhhh.
Then, my second thought was, "Yeah, hope you packed a sandwich 'cause
this could take a while.  A long while."
I don't know if any of you have ever been asked this question by any
members from your assessment team, or from just plain anybody, but it
really struck a nerve.  Not that I was put out by the coordinator
asking this question, but because I finally had to come out and
actually say - out loud,  that my biggest fear was worrying about how
hard my child will struggle with leading a regular life.  He can hear
pretty well now, but how clearly will he be able to hear in the
classroom and concentrate once he's in school?  He barely sits down to
play for more than three minutes, will he ever be able to participate
in circle time?  Will the other kids give him a hard time because of
his "ears?"  Will he begin to feel badly about himself because he's the
only kid in his class with those "ears?"  It's taking a long time to
get his speech up to par with his peers, how do we get there, and will
we ever find out what's causing his gap in speech development?
Of course, we are still praising the miraculous technology of cochlear
implants and Bud has come such a long way.  But as I have been saying
for the past two and a half years on here, there's a lot more work to
be done before we can proclaim that we have finally made it.  And when
it comes to your kids, you're always going to have something on your
mind to keep you up at night anyway.
Our coordinator then asked if that was the only thing that kept me up
at night, worrying about Bud's progress, and I replied that it was
despite the other thoughts in my brain screaming to be let out such as:
1. Ebola. Okay, really, it's this whole "self-monitoring" protocol and
the eight million different ways that each state should handle it.  Or
not.
2. That enterovirus making so many kids across the country sick and
landing in hospitals.
3. Did I take out the chicken to defrost for tonight's dinner?
4. How many years do we wait to try and buy and invest in a house?
5. Too many more questions regarding the economy to list here.
6. How many more friends/family members/ people close to me will I hear
about getting cancer before the end of the year?  It's happening so
much more nowadays.
7. Does Bud need regular preschool, special preschool or a combo?
Should I even think about homeschooling? But what if he ends up having
a shooting at his middle school?
8.. Did I brush my teeth this morning?
9. How much more will society collapse before my son turns eighteen?
Will college even exist?  I kinda hope not because there will be no way
to pay for it by then if costs don't come down.
To honor my OCD and make this list an
even '10'
10. I think I just left my purse in the grocery cart (I realize as I've
been driving in the car for fifteen minutes and now I'm halfway home).
Just a sampling of my brain on a daily basis.  Yes, I do acknowledge
that I should be admitted.
Maybe all of this is normal with the thoughts racing, the worrying, the
forgetting.  Maybe most of our fears are unwarranted.  Maybe it's hard
for us to face the unknown and to get past the fact that we can only
control what happens in the present, and even then it's to a default.
It's the need to control and the need to protect - especially once you
have children.  Because as joyful as children make our world, it also
becomes a much more fearful place for us as parents when we think about
just how complicated that world can be.
Posted by Eleanor Jones at 2:56 PM No comments:
Saturday, September 20, 2014
Made it to Maryland
We finally made it to Maryland.  Actually, we got here Labor Day
weekend, which if  you're wondering, it is a really crappy time to
move.
Our stuff didn't arrive until four days later, which meant that we
transitioned from living in one empty house to another empty house
again for a few days.  Bud did great - he saw it as indoor camping.  I
actually ended up sleeping in his toddler air mattress since he
preferred sleeping on a pallet on the floor.  Eating while standing was
not anything out of the ordinary for me since I have to do that a lot
while Bud is up and about. Having no tv WAS out of the ordinary.  Bud
was missing his Bubble Guppies and I was missing all of my History
channel line ups, Mysteries at the Museum, and various other ghost
hunting shows (there's an excellent new hillbilly ghost hunting show
now), and the Food Network's competitive chef challenges.
It's a huge relief to finally get settled, but there's still so much
left to do.  We had some furniture that got broken during the move it
and needs replaced, getting stuff switched over to another state,
trying to get Bud set up with the infant/toddler program up here (we're
on week 2 now, they somehow did not get him properly set up in the
computer system when I first called -  uuuuuggghhh), so as I wait on
the state's system this leaves me in kind of a holding pattern as to
what services, what days, etc. we will be able to receive.  This leads
to getting Bud into another preschool program.  I was told by the
infant/toddler program that they would probably be able to help with
that - terrific, but he's got to be put into the system and we have to
wait on a service coordinator to call and set something up with us.
So, as it usually happens, my own damn self will find something,
because I can't depend on the people who are supposed to be doing it
anyway.  On the plus side, there are tons of options here versus when
we were in North Carolina.  On the negative, stuff fills up just as
quickly here as it does anywhere else (just how many kids were born in
2012?) but it's trying to decide which program would be best suitable
for Bud's needs.
There are lots of wonderful private, church run preschools but they are
about a million dollars even part-time.  I have managed to narrow it
down to a few options:  the Hearing and Speech Agency (HASA) in
Baltimore has the wonderful Gateway school, which is completely
auditory/oral.  They also have a parent/toddler auditory/oral group
that meets once or twice a week.  Baltimore is only a half hour away
from us, but I can't get any information about tuition - which is
probably not a good sign.  That's like going to a Mercedes - Benz
dealership and finding the beautiful, white convertible and you ask the
alesman, "How much?"  and he proceeds to go on and on about all of the
perks of the vehicle but refusing to give you a quote.  That's kind of
what I've been getting with this place.  I have even come out and asked
(because that's how I roll) and the reps just act like they never even
heard my question.  River School is out - way too expensive and then it
takes about an hour to get into DC.  Then there's the Maryland School
for the Deaf, which has a campus in Columbia, only 10 minutes away from
us!  The reps I have talked to sound fabulous, and the curriculum
ounds equally as fabulous.  They teach a "World Concept View," in an
effort to get the kids ready for kindergarten.  I don't really know
what a "World Concept View" is, but it sounds all warm and fuzzy.  And
it's all FREEEEEEE!  I haven't taken the tour yet, but I'm planning to,
and I just need to know if Bud could go part-time.  My only hesitation
is that they divide the program between spoken language and sign
language.  I have no problem with sign language, and I feel like it's a
good idea to learn it.  My hesitation is that Bud never really took to
ign language, he instantly began to read lips whenever his ears were
off, and I'm concerned that he won't get the complete immersion into a
completely auditory/oral program.  He needs to be around spoken
language to acquire spoken language.
We also have a possible opening for a co-op preschool that is waiting
to get enough two and a half year olds to begin in January, so that's
good, but what do we do until then?  Also, the Catholic preschools,
along with the public run preschools here start when the kids are three
years old, and that's not going to happen until a whole year from now.
That leads to my other option:  an in-home day care.  Yes, the other
day cares either do not have the part-time option, they are full, or
they want the kids to be potty trained (I'm not even broaching that
topic now, that's a whole other post).  Also, Bud can't handle an all
day program.  He is exhausted by noon from running around, listening
and understanding what he is hearing.  He still has not built up his
tamina yet.  The last thing that I want to do is burn him out before
he is even three.  Yes, I understand that you have to push as much
language as possible in these early years, but every child is
different, and this child is one who will shut down just as fast like a
bank on Christmas Eve if he gets tired or bored.
With all of that being said, he has been doing wonderfully with his
language just being around us at home during this transitional stage.
He is now saying two to three word phrases, he continues to repeat new
words and applies them on a daily basis.  He is engaging in imaginary
play, picking up his toy cell phone, holding it up to his ear and
aying, "Hewoh?"
We're excited about his progress, but we know that there's much more
work to be done.  It's just the waiting on other organizations, the
money (will we eventually have to hire a private therapist?), how many
days a week, etc. etc.  I actually made myself sick last week with a
migraine trying to plan this stuff out (worrying) which really doesn't
do a lot of good, but I can't just sit around and wait for something to
happen either - and it's really not the language so much that I worry
about, it's the sensory/motor planning issues that I'm seeing that
concerns me the most.  Bud's words and sentences are often hard to
understand.  You can clearly tell that he is forming sentences, and
talking about what he is doing, but you can only make out one to three
of the words in his sentences - and he gives you this look like, "Geez,
lady, why don't you get it?"  I think that's what's killing me right
now.  We're doing a ton of language work and whatever activities that
we can, but there's a glitch in his system that's holding him back a
little.  Some words he can say as clear as glass, and then within the
next ten minutes he'll say the word again and it sounds completely
different.  And we haven't gotten help yet - and that's what has me
about to jump out of my skin, while I should be enjoying my child, and
being grateful of his progress so far.
Posted by Eleanor Jones at 12:00 PM 2 comments:
Wednesday, July 30, 2014
Not Quite Finished with CCCDP Just Yet
[IMG_3152.JPG]
Well, I thought we were finished with Bud's audi team in Durham at
CCCDP, however we were having difficulties with his left processor
yesterday.  Actually, his processor would flash orange every once in a
while the past two weeks, but it completely went on the fritz first
thing yesterday morning.  I played around with all kinds of stuff on
the processor, the cables, etc.  I checked his remote and it told me
that the processor was on the wrong ear.  Incorrecto, Remote Assistant,
as I had checked that already.  Not that I ever put his processors on
the wrong ears - ever :)
His processor finally began to flash green when I put it on Bud's ear
for the millionth time, and he seemed to do fine, so I went ahead and
ent him on to school.  Everything was still fine.  Then, last night,
he was flopping around on the couch watching Bubble Guppies, his ear
came off, I went to put it back on, and then the flashing orange crap
again.   Nothing me or hubbers did was going to bring it back to life.
So, just to rule out every possible (and horrible) issue, I took him to
Durham, a one hour and 15 minute trek forcing us to leave the house at
7:30 this morning.  This meant shoving sausage patties into a snack
container and having Bud eat it in the car on the way.  Luckily, I had
called Cochlear yesterday while Bud was at school in anticipation of
the thing completely dying within 24 hours (I was right on that one),
and they believed that it was due to a faulty wire in the cable leading
to the coil causing a weak connection.  We think this was caused by Bud
pulling his ears off and yanking at the cable when he is mad or when he
is trying to help us out by taking his ears off before nap and
bedtime.
As a bonus for making an impromptu trip to Durham first thing in the
morning, we got another left ear booth test with a mapping (let me just
ay that trying to keep a two year old focused during a booth test is
like trying to wrestle an alligator).  Bud now has his sensitivity
levels tuned up so that he truly gets surround sound now, which is
exciting.  And, as we all figured, his processor just had a bad cable
and wire.  But I will admit that I had a panicky moment when I saw that
flashing orange light.
It was a little sad to leave - again.  This was where Bud got his start
and where his hearing journey began.  The people in North Carolina who
have worked with him these past two and a half years treated him as if
he was their own, and that's something that we will never forget.
Posted by Eleanor Jones at 1:59 PM 5 comments:
Wednesday, July 16, 2014
Last Mapping for North Carolina
[IMG_2587.JPG]
We had our last mapping (last week) in Durham and it went well.  "Well"
meaning that we managed to get a twenty minute booth test on his right
ear.  Bud actually did the behavioral test by placing puzzle pieces up
to his ear and putting them back into their slot every time he heard
the sound being played.  However, the puzzles were the only thing that
he wanted to play with, and after that twenty minute span, he was done
and there was no getting any testing done out of the left ear.  That's
okay, since that was the first time that he cooperated for that long.
Also, I really wanted to know how he would respond with his right ear
anyway, since he always turns towards his left side during our Ling 6
ound checks.  It doesn't matter if you are coming from behind him on
his right side, if you make a sound, he turns to his left.  Nobody can
help me out with an explanation for that one, but we have noticed that
he may be left handed as that is his predominant hand that he uses for
a lot of activities.
Bud was scoring in the 20 db range again, so we are excited about that,
and even more excited about how many new words he uses every day.  I
wish I could give you the number of just how many words he has now, but
I have been a huge slacker lately with all of the house searches with
our impending move late next month on top of a whole lot of other
tuff, that I just haven't done it yet.
We still have not quite reached the two word stage yet, but it is so
close.  Every now and then he will say "Eat Lunch," but it's
infrequent.  We also still have not been able to get into occupational
therapy. Even with insurance approved we are on a lengthy waiting list
and I'm really not sure if we will be able to get an initial evaluation
before we move to Maryland.  I seriously had no idea that in our
relatively tiny town that there are that many kids who need OT?
Anyway, we are making progress, and Bud started back with his preschool
last week for the July summer session, but it gives me time to work on
house searches along with lining up new doctors, etc.( I won't even get
tarted on everything I have to do).  But I have to admit, as much fun
as he has at school, he definitely gets a lot more "froggy" with his
behavior.
I am hoping to do a better job with keeping up with this blog.  I have
pretty much been sucking at it lately and I apologize, but life has
been getting in the way.  And Pinterest.  Yes, I will fess up and say
that some days, I could update this blog, but the lure of Pinterest and
all of the offerings that she holds grips my very soul.  That and the
fact that I am actually attempting a lot of the projects I've pinned.
But for the most part, I have been on the phone with realtors most of
this week and doing neighborhood searches, you name it.  And I think it
has all numbed my brain somewhat.  But I resolve to keep at this blog.
I started this life project primarily to help others going through the
ame thing with their children.  It's what got our family through the
last two years, and I feel as if I need to lend support to other
families.   And as far as all the rest of the craziness around here
goes, it will all work out, it will all get done, and if something
falls through the cracks, well, it should have tried harder to get my
attention in the first place.
Posted by Eleanor Jones at 2:59 PM 2 comments:
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Welcome to Butters' Blog!
Butters was born with severe to profound hearing loss and was fitted
with hearing aids at three months of age. We also recently discovered
that he has LVAS/EVAS, Large/Enlarged Vestibular Aqueduct Syndrome. We
also recently found out that he has Mondini's Syndrome as well, i.e.
deformed cochleas.
This blog is to serve as a journal and a chronicle of "Butters'
Events," but I also hope that it will help other families who are also
going through this too.
We're kinda new to this, but I'm available to offer moral support, some
helpful tips that I pick up along the way, so feel free to comment or
email.
About Me
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Eleanor Jones
We're a military family, i.e. nomads.  Currently stationed in NC
and who knows where we'll end up after this.  I'm a stay-at-home
mom to "Butters"
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