The first of several... "It's been a year"

Chloe Jean - 8 1/2 months

It has been one year... May 22... a day that I won't forget... the day we nervously sat and waited for the results of Chloe's MRI scan.  The moment when Dr Lusk walked into the room and gave us a positive report and the news that gave us hope and started what I now call "Chloe's hearing journey."

Chloe's MRI results showed that her hearing nerve was present, her cochlea (middle ear) and vestibular system were normal - which allowed Chloe to be a candidate for the cochlear implants.  Flipping through (more actually like clicking through) pictures from that time still brings tears to my eyes, it is a reminder of - a day that both of us had had lots of joyful tears, a day that gave us hope for her future, a day that lifted weight off our shoulders...

It also brings back that painful phone call where they found the cyst - but several visits later, there is still no concern of that cyst and hopefully after one more positive check this fall, Chloe can cross that specialist off her list of routine visits.

 Recently had one of those moments where I probably should of stopped and thought before I spoke (yea, I know, it happens... ) But thinking back I don't know that I would have stopped myself... Chloe and I were out shopping and running errands, Sydney and her Dad were out and about - tball, dance, cattle, who knows... here's the story:

Chloe Jean - 20 months

So like any other outing or activity, I use shopping as a great learning and language activity with Chloe and talk to her as we go up and down the aisles - just think off all the different words you might use there that you don't at home playing on the floor and besides this keeps Chloe's attention and I don't have a fussy child - so anyways as we were in line, taking items out of the cart, we were still talking back and forth - lots of items Chloe was naming and lots of "what's that"... the cashier informed me "You know mom, you are teaching her all those words and pretty soon you are going to be telling her to shut up." And I without a pause simple and nicely said "No, I don't think so.  Chloe was born deaf and any spoken language we hear from her is a blessing to have."

May 2013 - Just checking In

Wow - it has been awhile since my last post - guess that means things are going pretty good then - and yes they are!!  Chloe has really exploded with all of her language - in fact - she is pretty good at telling you "NO" when she doesn't want to do something.  And she is quite the Little Miss Independent Chloe -- it is a hard decision to make - do you get frustrated or upset with the situation or praise her for using her words to tell you what she wants.  I found this the other day and thought - yes, that is our Chloe!!

Chloe is doing great in her hearing journey - I have discovered within the last few weeks that she can actually tell you which one (left or right side) is turned off or not on.  The CIs beep when they are not connected to the internal processor - basically they are off her head - and she does great and coming to one of us (including Sydney) to ask for help to put the CI back on.  Well, for some reason (I was rushed and out of sync with our normal routine) her right side the other Saturday morning did not get turned on, but it was physically on and as normal... but after only a few minutes, Chloe came running to me and said "Ut Oh Mommy, help Chloe" and pointed to her right side.  Well, since it was still on her head and just turned off, it wasn't beeping - she could just tell that it wasn't turned on!  How amazing is that?!?  I think for a 20 month old - that is great and shows she knows exactly what her CIs do for her!!!  Our next step will be to work with her on putting them back on all by herself.

As far as language goes - she is really starting to put two or three words together to tell you things and she is great a labeling items... for example, Mommy coat, Sydney hat, Daddy pants, kitty bowl..etc etc etc.  One really never realized how much language children grasp from their environment until you are teaching a child to hear everything that surrounds them.  Every new sound to Chloe is a learning activity - and when she stops, points to her ear - you know she is hearing something new or different and would like an explanation of what she is hearing.  Like a lawn mower - she could hear that Dale was mowing (daycare) but couldn't see it so I walked her over to the lawn mower so she could get a visual... all the little sounds outdoors especially ones we tune out that she discovers... makes you think!!!

We are thankful for all the service providers that Chloe sees - and they are truly more like family members than therapists.  And for now, Chloe just thinks that it is extra play time and not work time - but she is working hard!!!

6 months and counting!!

So it has been six months since Chloe began her hearing journey - six months ago she pretty much had stopped vocalizing all together and now she has lots of words in both her expressive (what she says) and receptive (what she understands) language.  Just tonight I decide to track all the different words she used...and I stopped tracking when I hit 2 dozen words.  That 2 dozen words in six months time - blessing!! 

Just the other day wwe were enjoying a snow day at home and when looking outside I told her it had snowed and she said "Brrr" and pretended to shiver.  I agreed with her and said, yes it is very cold outside.  That same day we were playing downstairs (with the wood stove roaring) and I was going to go upstairs to check on supper.  She was all upset with me that I was leaving and was telling me "up, up, up" - I told her "if you want to go up you need to find your socks and shoes!"  Chloe stopped, looked at me and turned around to walk straight to her socks and shoes which were across the room right where we took them off.

I have tried to catch her on video talking back and forth or during moments when I "quiz" her about all that is around her - animal sounds, what's this questions, etc...but it is very hard to get her on video!

Here is just a small highlight of Chloe: She is also starting to master using silverware which is what I initally tried to capture but of course fingers are better on camera too!



Working with Chloe at home doesn't feel any differently as it did when Sydney was around her age.  Granted we work with her every day on certain tasks and checks with her cochlear implants and she is receiving speech therapy or like activities three times a week - but her progress so far in her hearing journey is remarkable to think where she was just six months ago.  Oh don't get me wrong, it is no easy task getting her here or what lies ahead in her future but with lots of hard work and faith - we are all on this journey together!

An Amazing 2012...

Chloe's journey in 2012 sure has been quite the rollercoaster ride - lots of UPs and downs and fast curves but we have survived it all (a pure blessing from God that we do not take for granted) and looking forward to a great 2013 - but maybe with a little let drop kick to our knees, please... thought I would take time to review Chloe's Journey in 2012

 Received results from genetic testing that Chloe's hearing loss is due to a gene mutation... March 2012
First set of tubes and MRI that confirmed Chloe's hearing nerve was present... May 2012
Rushed appointment to Neurosurgeon - concerns of cyst found during MRI... June 2012
Chloe's first cochlear implant surgery... July 2012
Activation of Chloe's first cochlear implant... August 2012
Chloe's second cochlear implant surgery... August 2012
Activation of Chloe's second cochlear implant... August 2012
All the different sessions, meetings, etc with Chloe's Educational Team... Ongoing
Miles and Miles to Boys Town National Research Hospital (Love this place!)... Ongoing
Miles and Miles to Heartland Speech for speech services (Another Amazing place!)... Ongoing
Rushed trip to Children's Hospital due to thought pneumonia... October 2012
Second set of tubes... October 2012
Another round of chest x-rays, breathing treatments for mona/walking pneumonia... November 2012

Seeing Chloe turn to the sound of a bell for the first time, Watching Chloe explore the sounds during bathtime, Hearing Chloe say Mama & Dada for the first time (and all the time), All the jabber and chatter that fills our house, The first words (Up, Moo for Cow, Ut Uh, Out, All Done, Hot, Please, Hat, Help, Sydney, Donna), Having Chloe understand simple conversations, And seeing the girls play together and talk back and forth...

PRICELESS!!

We are thankful for the blessings God provides us each and everyday - we are reminded how precious our two girls are each and everyday - We thank from the bottom of our hearts our family that supports us through Chloe's Journey, Our employers who understand that our family comes first and allows us to take the time away from our work to do so, The AMAZING Team that works with Chloe each and everyday - And for all of you for keeping us in your thoughts and prayers.

Our Blessings...

As Thanksgiving is right around the corner - I want to take this time to reflect and express our thankfulness.  Brian and I could not be more thankful for the Team that is working with Chloe and all the love, support and encouragement we receive from family and friends!  

Sydney Mae teaches me patience every day and reminds me that you learn all you do by asking so many questions.  She can turn any given moment into a game - and her smile is contagious.  She is learning so much in preschool - she counted to 149 the other day (prompted her a little past 100) and stopped only because she was tired of counting.  Her love for books comes from me but her "hoarding" every little piece of something comes from her dad.

Chloe Jean's progress through her hearing journey has taken off in leaps and bounds and there is no way we ever expected such amazing results.  My heart is filled with joy when I say bye bye to Chloe and she runs to me wanting a kiss - in a little over 3 months ago - that communication did not come as easy to our family.  But it shows that Chloe is working with a great team who is pushing her harder and harder each week as well as surrounding her with support and encouragement.  We also understand that there are going to be low moments where it seems as if she is not making any progress at all - and we can tackle that hurdle when we get there.  The fact that she smiles and gets excited to see her CIs in the morning - her face is priceless - shows me that she is enjoying her "hearing" journey just as much as we are!

Happy Thanksgiving from our hearts to yours!
(Chloe had a few things to say too - although she gets quiet when the camera is running)

Checking In - 3 months!

Can't believe October has came and went - been very busy in our house!  Chloe was healthy enough to get tubes a few weeks ago - hopefully this will prevent us from more ear infections.  Surgery didn't seem to bother her too much but she is done having her oxygen level checked and screams when she see it - and the only person that could make her smile that day was Dr. Lusk.  I would have to agree with Chloe - he is an amazing person (Mom smiles too).  Now if I can only keep both girls in a bubble and away from all the crud going around.

October brings us Halloween - and Chloe wasn't so sure about the whole costume idea - but thankfully we were able to capture a few pictures.  Little Bo Peep and her Sheep (thanks to their very talented Grandma)

Chloe's walk through her hearing journey is amazing - she is responding so well to speech and sounds and making leaps and bounds with her progress (its only been 3 months since she heard that first sound of the bell ringing).  Chloe is responding to her name majority of the time (some of the time I believe she hears me, but is choosing to ignore my request) - makes several sounds of her own Moo for cow, Maa for milk, Dadda, Mama, Uhh for up, Mo for more, Sss for a snake...just to name a few.  Lately she likes to play with her John Deere camera and holds it up to her face and says "EEEE" for cheese.  Her receptive language is very strong as well - She is starting to look for toys (objects) with no visual cues, example "Where's your ball, Chloe?" - and she will go look for a ball.  Chloe is also pointing to her ear when she hears a new sound or a sound she recognizes implying "I heard that!"  And of course, her dad taught her "touchdown" to help cheer on the Huskers!  Chloe is a very busy little girl and likes to be playing right next to her sister - it's cute to see the two of them play together.

Haven't talked a lot lately about Chloe's cochlear implants (CI) in terms of the device, thought I would share ... There are lots of pieces and parts to Chloe's CIs - and in order for this Mom to stay organized, I purchased and tweaked a mini storage unit to help with it all.  The two units on the side are dryers; the CIs are taken apart (7 total pieces) each night to dry and have the batteries recharged.  We also have several different color options because this Mom likes to coordinate her CIs with her outfit for the day!!

We are truly blessed to be where we are at today - Chloe has an amazing "team" of individuals that help her succeed in her journey - 

CrAzY wEeK

Crazy isn't even the right word to explain this past week - getting the call the Chloe needs to be admitted to Children's Hospital of pneumonia, plus stop by the office first to get her "stats" to be approved to skip the ambulance ride was more than I was expecting.  But good news is that Chloe did not have pneumonia but a viral broncolitis.  Spent the night to be monitored (as Monday night she was wheezing and having troubles breathing) but released Wednesday and has been running laps since.  She is a tough kid that is for sure - she does have an ear infection (left) and fluid (right) and is currently taking antibiotics - as soon as she gets a clean bill of health from our amazing Doctor, she will again have surgery for tubes. :( Disappointed, yea a little - we are ready to be done with this chapter and move on to the fun learning things!

Speaking of fun things, her are a few things we have caught Chloe doing this week:
Eee (and signs with one finger to her lips) for Eat
Elo or something like that when she holds a phone to her ear
After she hears a door close, she will sometimes look at it and wave bye bye (at hospital, didn't see them leave)
My phone made a sound for new text message, and she looked for my phone and held hand up to her cheek
She liked to watch out of the hospital window and made lots of vrrr vrrr sounds as the cars went by

We are working with some higher frequency sounds, like Sss, to see if we can get her to respond.  And although we haven't gotten her to turn her head, there have been a few examples here within the last few days that she has repeated or spontaneously made the Sss sound.  Maybe, just maybe she is hearing it but not giving you the true reaction... something to keep working on.

Thought you might like to see how active (and noisy) she can be ... I know you are suppose to be quiet while waiting in the doctor's office - but this Mom can't quite tell her to stop chattering, I just enjoy it too much!