Today is a good day!

~Afternoon~
You know there are some good things that I am going to point out about having a child with a hearing loss...
~I love the fact that I can vacuum whenever I want. Even if it is late and the kids are in bed, ha I can still get it done
~Whenever someone calls late or says what time is too late to call, my response is...oh don't worry about waking anyone up in my house. Unless it is a telemarketer, then i give them the Allie MUMMA wrath:)
~You know how when you have little kids and there is a thunder storm...HA I don't have to deal with crying scared kids...(more Aubrey then Madie) but they get to see the awesome lightning and don't have to deal with the scary thunder sound! I will admit there have been times where if it is a really loud BOOM it may scare Aubz...she feels the electric storms:) I am sure her hubby will be so thankful. I told her the other day<>
~the shower...in our house we have a 7 minute rule....Aubrey gets away with longer of course. She locks the door (doesn't hear us knocking) and the timer HA means nothing to her!
~~Today I am grateful for my children and the path that we are ALL walking together. It is hard as hell at times, and there are a lot of judgemental people out there and I don"t deal well with that! People who think they can do it better or people who think their way is the best. I say......we are all in this together, no matter what mode of communication we choose, hearing aids or cochlear implants or just being deaf with no assistance. We need to support one another. It doesn't hurt to offer advice, but we need to be there for one another! some days are hard for me, honestly many days are hard for me.....the one thing i can guarantee you is that i will NEVER sugar coat any of my path, my feelings or my thoughts. I am who I am.
~~~Looking forward to Monday...we go see Kelly (our audiologist) for a hearing test on Aubrey's left ear, again she feels that once good hearing aid we got in Denver is no longer what it was! since that left ear was a borderline candidate for the implant....if it has gone down more....it is very possible we will be doing bilateral implants. Which is overwhelming in its self....but it is OK! I am sure one day soon I will be a wreck thinking about it, but today it is OK!!

12-28-2010

Good Morning Good Morning...
~~Well been checking out the advanced bionics website... www.hearingjourney.com and looks like there is no news to report! this really is a minute by minute thing. We have to wait for Advanced Bionics to work with the food and drug administration. The one awesome thing about AB is that they are not willing to put their product back on the market until they know for sure this is fixed. The other thing is, AB was not forced to recall, they did it as a volunteer thing. That shows me that the integrity of this company means something. There are two other options for a cochlear implant...but honestly the research shows that Advanced Bionics has the lead. One of the other choices has maxed out...where AB is only at uhm I want to say 38% so there is a TON of room for upgrades or improvement.
~~Waiting is stinky, as everyone knows I am NOT a patient person. Imagine me times 12. That is how Aubz is, she is so looking forward to this new day. It is better then Christmas mom, this is the best thing that will ever happen to me:) I agree...hearing things she has never heard....and other things that she once heard but now cant. This will be AMAZING.
~~Since we were in Denver and Children's hospital gave us that loner aid, things have gone down hill. Aubrey feels that what that "awesome"aid once did...no longer it is powerful. We go back to the audiologist on Jan 3rd for a repeat hearing test on that left ear! Maybe we need to dual implant....ughhh that was to fast. I was hoping that aid would last us at least a year. ANYHOW...lets wait to see....chin up and good happy vibes to AubZ.

D-PAN: Waiting on the World to Change

12-26-2010

Wow, these last few days are a whirlwind! Christmas was awesome, I will admit this year was harder then past...Frank's mom is now in Wisconsin with her daughter...My family is in Washington and we haven't done Christmas in my adult life. So it was Frank, me and the girls...we made cookies, we watched movies...we wrapped presents but most importantly we enjoyed each other. I always spend too much time as a mother...worrying about the specifics, hoping my girls will remember ~ that they will have one memory to hold onto. This year I threw that out the window. I know in my heart that my girls are happy. They are amazing, they have a treasure box of memories that may not be great or significant to others...but to US, they are unforgettable!
~~I am looking forward to 2011, I have decided that in this new year I am going to be everything i can be. i am going to share, I am going to learn I am going to offer my support. I am looking forward to some new ideas and I am hoping to make them soar. I am eager for so many different things...but one thing i am adding to the list is ALLIE:) I sometimes get lost in the many phone calls, letters and doctors visits...but this year I am going to try to be more conscious or ME:)
~I was on the Advanced Bionics wedsite the other night. Looking for any trace of a idea of when they are going to start implanting again. UGHHH I wish I knew. could be 6 weeks could be 6 months. We still have hopes becuase we have 4 weeks until Aubrey's surgery date! We are so excited for this....better then Disneyland...better then Christmas....it brings pure excitment to Aubrey when we talk about it!!!

~~Where does the time go~~

Another almost 4am night! I am just laying in bed thinking of....EVERYTHING, should we do volleyball, where am i going to find the CD Madie wants for Christmas? ughh, I need a vacuum...what can i call the mom's group i wanna start so badly? I wish i wish I could sleep! Does the landlord realize what he is doing? Maybe I should start a load of laundry....and the list goes on and on.

I talked to a friend tonight from my Missoula days, who is struggling with the feeling of "being powerless" a feeling that i can relate to. Her kiddo, her life long 4 legged "daughter" is on her last few days. The unconditional friendship Zoe has provided...the countless love and affection, she has given so much comfort is now limited. My friend feels helpless, she feels powerless. The pain is real~ it is a true ache. I have had this family on my mind and heart...I cant imagine saying goodbye to that unconditional love, that true friend...that love that on a bad day, took away that empty feeling and gave you such a powerful feeling. I have always said that the unconditional love a dog/cat brings to the table is so powerful!

I relate to the feeling of feeling powerless, feeling like I, a mother cannot fix! I am suppose to be the one that makes it all better. I am the one who provides the answers. I am the one who give my all...why, because I am a mother and that is what my job is. I do understand that I am trying, I am searching for answers, I am going to no end to provide.....but then that little piece inside says "are you really" and challenges me! How I can be my own worst critic.

~~Christmas is a few days away, and i am looking forward to this time where my family, my love my life and my passion can be together. Frank and I can sit back and watch Aubrey and Madeline smile...giggle and be in delight. We can share moments of this crazy life and love one another! I am thankful for my husband of 15 years, who has given me every ounce of his heart...who has cried with me, held me and cherished me. He who has given me a family, something that i longed for...something that I wanted more then anything. We are parents~~we may not be perfect, we may fight and we may slam doors, but at the end of a long day....I believe in, I trust and I am so proud of!

To my beautiful daughters....you are AMAZING. I was told i would not understand the amount of love until i held you in my arms, and that is so true! I am so grateful for this path, I am so honerd to be your mom. I am so proud~~I sat back earlier tonight watching you girls practice signing a Taylor swift song together...to make it perfect. I turned off the TV and shut my eyes. The tears came down but my heart was so full of pride, joy and LOVE. To see you two do something with such power, together....I love you Madie....My Aubrey!

another rough day!

morning....
My night has turned to day! I have paced the floor all night, been watching countless infomercials...and drank to much!
Another day to make in the history of our lives. It is Christmas break a time where the kids drive you crazy because they are so "bored" Well Aubrey and her best best friend have been inseparable, not surprising...but a true comfort to see! Yesterday afternoon when AUbrey came home, with Thrya in tow:) she was down, i was reading not happy vibes off of her. sitting at the kitchen table, talking about life ~~after the 10Th...huh, what mom, I asked Aubrey if she had her hearing aide in...The tears started coming...and they were unstoppable! "Mom, this new hearing aide is just not doing what it was doing for me in the beginning, I feel like i cant hear what i could" ~~~ in my gut i wondered also if things were getting worse, hearing more what mom's and seeing more frustration. I cant ever tell Aubz I understand, i have learned that lesson, I DON'T have ANY idea. But my heart aches, I see her sadness and she her struggling to fit into the conversation...or see her eyes locked on the lips of who are talking. I knew! Sitting at that table, seeing those tears I just wanted to go RUN, run somewhere far...hide and cry, sob...I am a mother who is suppose to fix things, I am suppose to make it all right, I cant! I have NO control!
I asked Aubz bestie if she cried during those moments. (she has somewhat of a similar loss) I asked her if her and her mom have "these" kinds of conversations...How does she deal with feeling like more is gone. " i cry too, it hurts, its devastating...and Aubrey and i get each other so i can always talk to her about it" I know deep down I am not the only one...I am not crazy, but at times this feels so isolating, so horrific..I feel so alone! and the crazy part is while Aubrey is grieving a loss, we as her family are grieving too. I hurt so bad last night, I emotional hit a wall...I needed to feel the power of love, and i was EMPTY!
This morning....
It is a new day, I am sure here soon I will be sad. But I started off my day with a Aubrey hug...told her i loved her the mostest and told her that she was a awesome girl! I had coffee with a friend and dang those two hours were so needed. I am taking today hour by hour. I am going to enjoy this piece of the Christmas break and make some cookies with the girls.
~~This blog is my way to be able to write what i think and what i feel....it is my place to just be me. I don't have to pretend to be strong, I can fall apart. I will never pretend here. I will be ME, I will never apologize for how I put it or what i said. I feel that we as parents, siblings, mothers and grandmothers of kids with a hearing loss....we need to be supportive. Thanks for listening

Miley Cyrus - Party in the USA - ASL Song

Owl City - Fireflies - ASL Song

Today I am writing to vent. to not be judged, to not be careful of what i say~~to just be real! I am so proud of what i have, my girls, my husband my life! I am so blessed to be apart of this life. Who would have thought, me...Allie would be married and 15 years at that! a mother of two of the most amazing girls ever!
Tonight i struggle. I am sad...i am overwhelmed. I am angry, hurt pissed off...torn tattered and boggled down. sometimes i want to scream cry and curse. I feel guilty, I want to do nothing but give but cant! I can offer my giant amount of love laughter and giggles!
If it were a perfect world...

been a cray few months...

~~Life has been busy~~
Where to even begin and make sure everyone is filled in, i do better at always sharing at face book so if anyone wants to request that would be great too! But i need to be better here, because we are a team and if anything i say is even a fraction of what someone else is dealing with...or has dealt with...we are a team and we are walking the same path!
Frank, Aubrey and I headed to Denver last month. It was time for a better opinion then Montana could give us. As a parent it is my job to go to any end to get answers....to ask anyone and don't fret over the toes I am stepping on. The point is I am not intending to make people mad...but to get the BEST for my daughters!
Our purpose in Denver was to go through the cochlear implant clinic to see if Aubrey met guideline...was a candidate for the implant. Knowing that a Dr. THE doctor in Montana was NOT willing to implant Aubrey...why? good question, I am dying to know too. Anyhow, long long story and trip, so emotional...but SO WORTH it! the bottom line is AubZ is a 100% candidate for the right ear and a borderline for her left! how awesome is this...our door has been opened. We got the golden ticket:) we even scheduled for surgery JAN24th 2011! her right ear will have a CI!!
We came back to Montana and assumed that all would be awesome...we would be in Denver for two weeks and that would be that. Well, the first roadblock was the insurance company. Both girls have state insurance. When I called I was asked how i knew they would cover this 30 thousand dollar implant surgery? ughhh, really? reason being the two states have different criteria. So I have written a letter of appeal and am praying to the good lord that we will be fine! In the mean time we have opened a account for her at a bank....we are doing fundraising....there are things that insurance does not cover....and if need be this implant might not be covered! YIKES... I have been looking for a job...and boy, am doing everything extra I can. How frustrating. The second road block we have encountered is Advanced Bionics has recalled their CI....What does this mean. Well Advanced Bionics is the brand we have chosen for Aubrey....there are three different ones, but AB is truly the top of the line! there were 2 people out of 228 thousand that experienced a sensation that was pain 8 to 10 days after surgery. so they voluntary recalled ALL implants and are working with the FDA to figure out what exactly has gone on. Some would sit back and wonder why on earth i would not be worried about that, well i will tell you why. It was a voluntary thing, they obviously care for their patients. Those numbers are WOW...that tells me every thing will be OK. Also in our trip to Denver Advanced Bionics got me in touch with a mentor...a mom who has gone though this with her boy...she can relate and offer herself. Dionne was a blessing. She stayed with us all day...was a shoulder for us to lean on, someone to ask the questions that were important but i was to emotional to even think of....her family was AWESOME!! Since we have been back I have gotten a few emails from the company checking in on us and what stage of the road we were in....that company stands out to me!
All in all... we are finding that we are so grateful to Denver, they proved to us that the most important thing to them~~was doing whatever it took for their patient to hear. Whether it be a new hearing aide or a cochlear implant...they just want that patient to hear! thank you Denver....thank you

October 19th:)

~~on a side note today is Frank's last year of his 30's...today he turns 39!!! Happy birthday to the man that is AWESOME~~my Frank!

~The last few weeks have been a struggle for my Aubrey, she has been so challenged, so put to the test and today she is sick, I really feel like it has worn her down and beat her up...so now she is sick~~and sleeping like no tomorrow! School is her safe zone her place to succeed her place to shine...she has complete acceptance and love! but the loss of the hearing she had left has just turned her world upside down! The desire to hear more the want is so strong, I hate seeing her get so frustrated because she just cant get it. Today we see yet another new audiologist...here in Great falls, I have my fingers crossed that this one will work out. We had gone to another one across town that was suggested by our old audie and wow, she was HORRIBLE. I should have known when I called to make the appointment, it was like pulling teeth to get them to cover a interpreter they felt "it was not fair that they had to pay for this out of their pocket" fortunately there are laws the ADA is my friend and wow I have learned a lot!
We are still awaiting a call from the Denver clinic where will go for the beginning of our cochlear implant process....I emailed the audiologist today and hoping for a call back this week! we are ready for the path to begin! we are ready for more options!
~~I had a meeting with Madie's school Lewis and clark....and wow for the first time in her schooling I felt AWESOME. we were all a team and we were all going in the right direction...we all wanted what was going to be the best for Madeline:) she will be sharing time with MSDB and Lewis and Clark....she will be mainstreamed but then go over to MSDB for lunch some sign language social time with her peers...and a interrupter will be over for Madie at Lewis and Clark in the morning till lunch time for her they call it sign support:) Then we also have started talking with the cottages about Madie spending more time there...maybe a few times after school staying for dinner then once a week sleeping there.....AWESOME!!!
~I on the other hand have overwhelmed with being an advocate....but i as always will continue to push through:)

understanding a cochlear Implant
~~1. the outer ear collects sounds waves that pass through the air
~~2. the sound waves vibrate the eardrum and the three tiny bones (hammer, anvil and stirrup) in the middle ear
~~3. This vibration moves the tiny hairs of the sensory cells in the inner ear or cochlea: sensory cells convert the vibrations to an electrical signal that is sent to the hearing nerve
~~4. The signal travels up the nerve and into the brain, where it is interpreted as sound.

Hearing with a cochlear implant
~~1. sound is captured bu a microphone on the sound processor
~~2. the sound processor converts sound into detailed digital information
~~3. the magnetic headpiece sends the digital signals to the implant
~~4. the electrode array on the implant sends electrical signals to the hearing nerve
~~5. The hearing nerve sends impulses to the brain where they are interpreted as sound

Good Morning....
~~My mind is in so many different places these days, and finally when I thought we were starting to cope, I feel as though I was hit by a semi truck. The carpet was ripped from under neath us...every hope that i had is now gone....
We came back here to Great falls to do the H.I.N.T test (not sure i can even begin to tell you what i think it is cause what i thought it was has proven to not be it) I know that doesn't make much sense...Aubrey this time did AWESOME on the test...now that does NOT mean that she is hearing normal..it has to do with speech and how well she can discriminate...How she is processing what goes in and how well the hearing aid is doing its job...Really I am new at this...we wasted 11 years with a audiologist in Missoula who couldn't even teach me how to read her audio grams....so the lingo is still new to me:) Anyhow...since she did well on her H.I.N.T test this time they said well "maybe we should go back to the idea of the better hearing aid"
DON'T get me wrong, I had just started to give the cochlear implant thought, and I was starting to learn and i was starting to accept~~~now the rollercoaster has gone on another turn. Aubrey and Madie both have E.V.A.S (enlarged vestibular aqueduct syndrome) and hearing comes and goes things are ALWAYS changing, just when you think you have something under control....ha you get hit in the head with a ball and ALL the hearing is gone. Will it come back and when will it come back....that is the sad part of this syndrome...no one has answers. We wait and we see....it is so FRUSTRATING.
I truly understand we are in a great place for my family, BUT I do feel that it is in my girls best interest for others to look and learn what we are dealing with...other professionals. Do I feel guilty, yes...to some degree, but we are all on the same page and want the best for Aubrey and Madeline!
I got a packet of information from Seattle..they have a hearing clinic there and Aubrey had her first ABR ( auditory brain response) test there at 18 months old...I saw what they had, I trust Seattle knowing that Aubrey had her heart surgery there...and it is a bigger city then Missoula and they have WAY MORE to offer! so I fill out the load of papers and i send it back along with her audio grams and some other needed information. I want someone to look at what she has and tell us what direction to go in...once we are told to do this then well maybe that isnt a good idea....then back to the drawing board....

coming back!

~~I am back, it has been to long. My heart was in the right place once this blog was started but i just had NO time to actually sit and write. But as of today, I need to be here, I need to write daily,, not only for myself, but for others out there who have some of the same struggles, I don't want anyone to feel alone~~Which are some horrible feelings, I want to be a blessing to others:)
So we headed to Missoula last week to meet with the audiologist....knowing very well that is was time, our options were limited and we needed to start the path of the cochlear implant! I always knew that we would end there...(and ending it not a good word to use) but I had NEVER even opened a book or a phamplet on the cochlear implant, I felt so uneducated and so new....which in reality I am ....I cant answer questions, but i know how I feel. I felt so incompetent as a mother, so guilty, lonley sad and ALONE. I sat back about a week after crying and not getting out of my pajamas....I realized i was morning her loss, I was sad. My guilt came from being selfish that i was experincing these feelings, for as it was her who should be feeling these feelings. Aubrey did infact struggle, she is having a hard time understading where she fits in...how to cope with hearing the birds chirping one day then the next week not being able to hear yor mom say "I love you" it is a battle, but today I realize that It is healthy for me to greive as her mom, but we are strong~~~

the path twords cochlear implants....

When we got the news that Aubrey was hard of hearing and we knew it was progressive loss, we knew that one day she would need a cochlear implant. I never looked into it back then I just left it alone until the day would come.....that day is now here!
I am feeling so overwhelmed, scared, concerned, sad.....even angry! We met with the surgeon in Missoula, Dr, Vonorten and I am not doubtng his ability just his ability to conect with the family....not sure that makes a ton of sense!
The thought of the cochlear implant was scary to us, i would always in a heart beat give Aubrey what she wanted....but is this right for her? I just am not sure of that answer. I love my girls more then life itself. I HATE to see the sadness and hear the comments as such. I remember i used to hear your voice and now i cant, or i hope i never forget what the kitty purring sounds like, ughhh such a long road ahead