Monday, February 20, 2012

Sophies Implant story Part 1: The Beginning

Ive been holding back this post for days now. Unsure of what I really wanted to share. Unsure if I should share. But of course, Here I am writting. Tho Im sure as today is hectic, Ill be leaving it unfinished for a while and wont post it until later.

Bare with me friends...

As Most of my readers are aware of, Sophie had her Cochlear implant surgery on the left ear. February 16th. It was a Thursday. Done By Dr. Crawford, Pediatrics ENT surgeon at Madigan Army Medical Center, here at Fort Lewis WASHINGTON.
We Opted to go with Advanced Bionics, and two separate processors, The NEW NEPTUNE (Sophia is the first Child in The Seattle Metro Area who will be fitted for this specific Processor,which is kind of cool) as well as the 2nd processor the Much loved Harmony.
We had Pre-op on Feb 13th A Monday early in the morning. Quick and easy minus a Sophie melt down while waiting.
Matt Had taken 2 weeks off of Leave for this surgery and to be here for her healing process, THANK THE LORD. This was his actual FIRST TIME ever taking time off from ANY JOB (besides a few days here and there for Child Births or PCSing with the Army) Hes got this last full week with us, and its been WONDERFUL having him home, truly sad that he will be going back to a regular schedule, cuz Ive been spoiled with him home 24/7.

I had been doing my best to prepare Sophie for her upcoming event but, how do you explain something so serious to a little 3 year old. Showed her the neptune booklet, which eventually that same day got torn to shredds by her...."heres your sign" yeppppp
I also was preparing Emily in the same manner, showing her pictures, explaining whats about to happen, and why wrestling and rough housing will be limited for a few weeks after. Why Sophie would be in pain and so forth.

The day finally came, I actually did sleep a good few hours, just enough to make me get thru the day. The alarm went off at 5am, I was up by 530 lol. Got myself ready in peace, warmed up the van and waited till the very last 10 minutes before we had to leave to make sure, the thought of her morning routine wasnt really in her sleepy mind...aka FOOOOOOOOD~ as of course she wasnt allowed to eat for 12 hours before the surgery. Of course, she woke up easy, perky and ready to get her shoes on. She asked me once to eat while we were driving the 10 minutes to the hospital. So I tried to distract her thoughts with the "face mask" the nurse gave her at Pre-op to make the going to sleep part not as scary...I pointed out cars, and Soldiers running for PT, formations of Soldiers in front of medical companies and had her dancing to some beats in the car...COURSE the beats she can feel. As she LOVES music and LOVES to dance.
We parked in a very empty lot. Close to pediatrics yet far from surgery. PURPOSELY. Text my Jackie as I was enjoying the fact she text me bright and early and was thinking of Sophia on her crazy day.
We made the long walk across the hospital Sophia was a peach, pointing at the photos of water, and ships, birds and such that madigan had hanging in the wall, waving at every worker who walked by. Smiles...SMILES...more SMILES.....That I had a gut feeling were not going to stick around.
And I was right, not even 2 seconds after walking into PRE-OP the same place she pitched a Sophie melt Down 2 days before SHE STARTED TO MELT DOWN AGAIN. Pulling me from exit to exit, throwing pamphlets and Didnt even want to go in the childrens waiting room where more children were watching a Disney Movie. I wasnt allowed to sit, and she now gave the stink EYE to every passer byer. Once her name was called and we had to walk out the exit...she was fine, thinking that was easy, but not realizing we had a new room to enter to dress her in a gown. I walked with her thru that door and again.......MONSTER SOPHIE SPRUNG INTO ACTION. At the sign in window I warned the ladies that she was in a mood and Being WAY LOUD. Something thats hard to get under control.
MY SMART LITTLE DRAMA QUEEN KNEW SOMETHING WAS ABOUT TO HAPPEN, LIFE WOULD BE CHANGING, and that she would be coming out a new...and pain filled Sophie. Right away they had us change in the room...this is the product of that activity

As you can see she was not having the gown. To the fact I left her own pants on. Didnt even both putting the hospital ones on. Tried to calm her down before we walked out of the cubby hole. BUT>> that didnt work. The lady was nice tho and calm, just said "you have to remember we have other people around".....Well Im sorry but NO SHIT...shes more then welcome to take a crack at it. We opted to stay in the locker area instead of the waiting room with other patients. Two of whom were young kids waiting for their own surgery. When a little boys turn came to change, and Sophie was freaking out he came in and looked at her and got upset right away, refusing to change. I explained how its different for her, that she cant hear, and just feels that shes about to experience something she doesnt understand, but his damn grandmother just gave me the most evil look. IF ONLY I CAUGHT THAT WITH A PICTURE....It was ICE COLD.
The Nurse then said. "well stay here in this room, Ill give you a wheelchair to sit down with her" Sophie hopped up on that thing and calmed down. Her notorious finger pacifier went right to her mouth, as she hummed and pointed from locker to locker, We signed numbers together, and counted. I gave her a pen and paper to help pass the time. We had already been at the hospital since 645am!~ YEP 645 AM~~~

Funny enough when Doctor Crawford came into see her and explain whats next to me. SHE WAS ALLLLLLLLLLLL SMILES and nice to him. Everyone else including me kept getting shunned by her, but ohhhh no, not him. Maybe that was a good sign. We waited a tab more before Anesth. Doc came in. By then she was up off the chair and playing with the locker locks. The Gentle man explained everything again I said "all I care about is making sure you take GOOD CARE OF MY BABY" He said "of course I have 4 of my own, I will take great care of her dont worry, it will be over in roughly 2 or 2and half hours" Picked Sophie up after I kissed her sweet face and she walked away in his arms QUIETLY~IT WAS 8:03am by then.
I COULD NOT BARE THE THOUGHT OF GOING TO THE WAITING ROOM AT THAT MOMENT. in fact my legs wouldnt let me. So I wandered the halls, grabbed 2 separate cups of coffee, text a little when I got service

After an hour of walking I found my place in the waiting room. Watched as call after call to the families waiting came into the waiting room. Thought it was strange that more then 75% of "come see the patient surgery is over and they are awake" came via calls to the waiting room, instead of a nurse or doctor coming....But leave it to a military hospital to fore-go bedside manner.
I read a few old mags, and actually Saw some great articles like "the snob diet" which was an interesting read, and made perfect sense. to the Latest worst and best dressed in life and style.

was texting and texting and texting and was glad to do so, It was helping more so much. My leg however, that has this odd twitch to it ever since my csection, was GOING BONKERS, My leg kept finching and popping up at odd moments, so I just kept them swinging While I sat...HAHAH PERKS OF BEING SHORT in a chair.

FINALLLLLLLLY longer then I thought surgery would go, Dr. Crawford came and got me. Said that she did wonderful, she didnt give them problems before hand, and that the cord went into her Cochlea just fine. The Only issue was that her skin is thin, so the implant was sticking out some, leaving a larger then "average" bump on the side of her head, right behind her ear. And....that while waking up she was a bit, well SOPHIE. I dropped my purse when I saw her, grabbed her and sat with her. Her eyes closed and her whining. Pulling at the ear cover that had to band across her forehead. She was wiggling, and crying, and punching me in the head, then holding me tight. then punching me again and ripped off her ear cover 3 times. BY THE 3rd she chucked it so far, WE COULD NOT FIND IT. Come to find out, they were waiting, and didnt give her any pain meds. Untill I said plz give her something...which then took 10 minutes to do so, resulting in my own pony tail then pulling pulled to the side and FRIZZ everywhere. As soon as that med was in her IV, down she went....and slept. THANK THE LORD.
An hr into recovery discharge papers were signed. Replacement ear covers gotten and the nurse even went to the pharmacy for me and got the meds we needed for her at home. She was set into a wheel chair and we got walked out to the VAN. THANK GOODNESS WE ONLY LIVE 10 mins away as she was insane. MAD. and I was nervous she'd start pulling at her ear again. especially since she still refused to where the ear piece. BUT WE MADE IT HOME. TIP TOP SHAPE. but her sad and hurting. She cuddled right on my lap on the sofa and We sat and sat and sat, she slepted a little. N I got a few good shots of her boo boo

MY POOOOOOOOOOOOOR baby. But at least she didnt get stitches, they used Skin glue instead.
We decided to spend the rest of the day and night in my room. Just she and I and the bed and TV. And there we camped for about 16 hours straight. The next day she was in better spirits. NOT WONDERFUL, but wonderful enough to ask me to give her a bath. She ate half a pain dry bagel, a few go-gurts and the only problem she gave me was taking the codiene. Guess it taste is gross. Later that day I noticed her cheek and temple BLOWN UP, very swollen, and called in the Doctor tho they were closed for training, the emergency line was open, she told me shes page him and he'd call......BUT I NEVER GOT A CALL.

this is as good as she would let me get of her face swelled up
But regardless she was feeling better, she pretty much stayed in her room watching Scooby doo all day, OVER AND OVER, to her liking, its her fav new thing. But I insisted on having her sleep in my room again with me. So Emily and Daddy camped in the livingroom on the pull out bed.
She pretty much slept thru the second night. Which wasnt the case the 1st night, she was up and up and up and watched Disney for hrs. as I tried to snooze and she'd bust me in my face for having my eyes closed...yep she hates to let me sleep while shes up alone.
But we made it thru. After 2 nights we let her sleep in her room. She got up after 3am and sooooo gently and cute(ly) pointed to her ear, and made a confused sad face...indicating pain. Took her meds, turned on scooby AGAIN FOR HER then she eventually drifted back to sleep.
Here we are MONDAY, shes jumping around, didnt take any pain meds today, tho I tried to give her some. She danced and roller skated, played with the new puppy Jesse and has adjusted well. Swelling went down some and she even went out Yard saling with us this weekend. Emily understands to take it easy, though has to be reminded at some moments. But has shown affection and i love you signs all weekend to her sissy. Ryans clueless but ha thats ok. he wont remember any of this.
Our Appointment in Seattle for her Activation is scheduled for March 15th as of right now....

ITs been a long few days, Im a bit overwhelmed. Still not team implant, but who knows that could change. Im sad I put her thru the drama and pain. and CONFUSION mostly. But IM SO GLAD ITS ALL OVER. I still have concerns about the implant being in there. What about her loving to wrestle, and playing baseball (her fav sport) what if she wants to play soccer. the risks are extremely high of taking a shot to the head. DOES THIS CHANGE A LOT OF ACTIVE POSSIBLITIES FOR MY BABY. my sporty, tom boyish baby girl??????????
Ill always have something that concerns me...I know, but they only thing that was limiting her was NOT hearing before. AND seems to be more limiting having this THING in her head.
I just cant seem to find any peace in it, AT ALL.

But at least she is ok. It went well, shes getting better, and feeling herself again...beautiful and funny as always

Monday, February 6, 2012

Just a Monday Morning Ramble

Phew~ What a Night we Had. Patriots Lost the Superbowl to the Giants no less,found out Taxes are taking a ton of dough we need for back tax, and Sophia had me up till 2am. Ryan...woke up at 6am. Needless to say Ive been running on Coffee all morning. But it got my house tidy and laundry in the process of being finished. Mondays I love to Do a Big clean of the house to rid of The weekend left overs, when everyone in home together, and we are lazy.
Amazingly enough tho, Spirits here seem to be Pretty chipper. Honey I blew up the Kid AGAIN is lullying the kids to silence (for now) and they had a nice play date early this morning. My watching a few kids for a friend has been a HUGE benefit for our kids. THey enjoy having someone non related there to play with and Make up games with. Share snacks and Watch a funny movie with. Its not always easy with Ryan being Sensitive and crying when hes even Looked at By the Youngest Daughter but....He will get over that soon. I HOPE!
I was on the edge of the Sofa watching the last 2 minutes of the Superbowl. Eyes closed tight once Brady got The Ball for one last Try to get it down the Field and Score a BIG WIN. But Sadly my boys didnt pull it off. Madonnas Superbowl special was BORING as hell. The only thing that sparked my interest was the special graphics all else Failed in entertaining me Greatly. However I did Love the National Anthem But I truly wish NBC showed even a piece of the ASL rendition as I read that Miss Deaf America was to be there signing...BUT WHERE? WHY WAS SHE NOT SHOWN? and if it wasnt her, why wasnt any signer Shown? BOOOOOOOOOO network for cutting that from the program.

As today starts the first full week of February and Marks 10 days till this Surgery for implanting Sophie, Im here to dedicate the next days to Little Sophia Gabrielle..."gabby" as we have been going around called each other for fun by our Middle names this weekend.

I find it unsettling this Surgery. Not just for the fact shes going under, or the process or the pain she will be in, but for that fact that STILL, Im wondering if Implanting is the right choice.
I Had thought that once the appointments were done and the schedule made I'd be settled on one side...implant side. But I AM NOT. I can still say with my whole heart that I do not know if its the right choice. I can say with 98% I DO NOT WANT HER IMPLANTED. But I have to remember its not my life, and its not JUST my decision, Its a decision as a family, in what will make Sophie Happy. Key Word "happy". As of right now Shes a happy little girl, expressive, and funny, witty and smart.
I know many of you out there have a different opinion, and WANT Sophie Implanted, and look at me with disappointment for wanting it not to happen for her. But I have to emphasize, No one Knows Sophie better then her family, US the 5 of us. Not one Knows Sophie better then ME, as I communicate with her 24/7....hahaha truly 24/7 as she has bad insomnia.
I guess, Fact is Sophie is Sophie Because she is unable to hear. Shes not ravaged by the poor language I have hahaha, or that of the World around her. Shes not brought down by the fact she can not hear the TV. She Enjoys movies every much. Laughs at what is funny. Mimics the Facial and body expressions. Understands the story line. Gets excited when an important part of the movie takes place. Has her favorites. Adores Books and Puzzles.
She is every bit a 3 year old as the next. Hearing or not. So when People feel as tho, shes not normal...or can not fit in...or be successful...or smart...or communicate It Sux. "oh ye of little faith"
Sure often times I wonder "how does she Think?" ligit right? I mean As I type now I think of my words...But For Sophie, is it All Pictures in her mind...signs....?? Let me take Last night for example. Sophie was having a rough night, she wanted me by her side till she fell asleep...At 830pm I was there rubbing her back and she passed out. But At 11pm she was up again upset and wanting me in her room. She we put on Anastasia and I had hoped she'd fall asleep, instead her stubborn little self Fought every heavy eye, every rubbing of her cheek (her fav) rubbing of her back, and legs, and forehead, I even massaged her shoulders and kneck and Back of head. YET....I was the one Knodding out more then her. The Entire movie we watched and I was still sitting in the room. Every move I made away from her would Jolt her into tears and Loud yells. So there I waited. When the Movie was over I refused to put a new one in. So she laid there, being Sophie...thinking. Not needing me but just wanted me there as a comfort. I watched her as she pointed to the ceiling over and over, chattering her teeth and laughing, squinting and sign babbling with her hands in the air. Smiling, then winking,the cowering like "frightened" then Woooping in a low voice, and doing it all over again as IF, shes thinking the same ideas over and over. It was Beautiful to see. But How I'd love to get a glimpse into those very thoughts.
My point is Im not worried about the success of Our Sophia. Im not worried about Progress, OR HOW something will come about.
I find it a tad....bothersome when People will ask me "how does she learn if she cant hear" While I understand we are a hearing World...Theres deaf culture for a reason. Its as simple of an answer as "just like every other kid, You arent born knowing that a ball is called BALL by making the sounds B.A.L.L You are taught. Sign language is the same, You are taught by association, that sign goes with that item."
Sign Language is not easy. Theres no much to learn, ASL has its own unique system, and value and style. Lots for someone who has never studied it before to pick up. So I understand how it is "different" for someone to wrap their mind around. But I must say Im very sad that Friends and Family, who are curious about Sophie, do not have the desire to LEARN ANY SIGN LANGUAGE to help them better communicate. For Although this is a hearing world, We will NOT be forcing Sophie, TO Conform to the Hearing world and ALWAYS be the one adjusting her comfort zones for hearing friends and family.
An Implant, for a child especially who knows nothing of sound for 3 years, is not going to make her a hearing citizen. Do not misunderstand what this implant will do, it DOESNT NOT REPLACE HEARING, but allows her to learn what sounds are. Again I will re-state that we will NOT BE forcing this device on her. We Will not be MAKING her listen, or use her words if she is not wanting to just yet. As someone not here in our day to day life, It is easy for you to judge that to be whatever you want...but Because Im not Pro implant, Im not pro Aural Therapy Either. Sign language will forever be her 1st language and Our 2nd, and We are more then happy to be the ones who dedicate ourselves to learning a Brand new lanuage and such to not bombard Sophie with more then she needs. Being Deaf is not Terrible. If you were ever given the choice to be Deaf or Blind I BET 95% of you's would say you'd prefer to be DEAF.
Just as The family of a Blind Child cant run to a Doctor to fix their blindness, but they live a life full of acceptance, as should families of Deaf Members. So again, this implant is to allow Sophie to access sound, But its not to re-define her. Im afraid to lose the Sophie she is, because she is then not as expressive with her face and body language.
I dont want us to use WORDS as the Easy way out. Its not easy for Sophie....(right now) so how does that make it fair. We are not forcing anything, and Will be going against tons the therapist says Im sure, and Im sure Ill just be Yesing them to Death, And let Sophie learn at a pace shes comfortable with.
Truly making this Decker Family, A bi-lingual, and Bi-cultural family.
I just hope that Should we be moving back to NY that people who WANT TO be in Sophia's life on a regular bases, WILL in fact, pick up a Signing book, or view ASL webpage often, and start picking up the language, learning MORE then just ENOUGH to get by. At least this Proud Mama OF a Deaf Daughter can hope for it~

Wednesday, February 1, 2012


Happy Short month and Leap year Bloggers.

I welcome February with WIDE open arms.

Summer can come soon, I want to be trippin to the West Coast Shoreline as Often AS possible this summer. Boating, fishing, hiking soaking up All the Out doors Washington Has to offer.

But For now Since its Still Gloomy Winter...Ill be tinkering in doors, Waiting~

Hope February is An Awesome Decker Month :)