CI Update!---ACCEPTANCE!

I called SACENT today several times with no answer so I decided to send out some emails! I wanted to make sure on the date and time for Ethan's surgery...I got an email back saying that the Doctor was trying to do it sooner that way the surgery would be first thing in the morning! I'm going CRAZY and second guessing everything as usual!

I know I need to accept the fact that my son will be completely deaf after this....That scares me!

I know I need to accept that even though the odds are everything will go as planned it may fail.

I know I need to accept that Ethan may HATE this and refuse to wear it due to his extremely temperamental self! How will I handle this? Do I let him go w/o it?

The operation I know is going to be difficult....I know my little E and he's going to kick scream and fight us from the second we walk through those hospital doors! (we couldn't even do a MRI or a ct scan in under 5 hours due to his temperament)

I know that we can NEVER go back to just wearing hearing aids...This hurts horribly!

I know that if everything goes well and Ethan does well with the first CI it wont be long until were scheduling bilateral.

We're monitoring Kiley as they suspect that her hearing loss will too be progressive and she may later on be a CI candidate and we will go through all this again.

I know that I need to accept that this is a decision I have made for my child and he may later resent me for it. But this was a decision that had a lot of thought, input, tears, frustration, many many different peoples opinions, heart, and soul put into it before we agreed to it

All I want for my children is to have a life full of all the opportunities I had if not more! They deserve it! I have wonderful kids and they mean the world to me! I want them to have lives that are filled with love and pure happiness....I don't care what they choose as an occupation! I don't care if they fall in love and have children...I just want them to be independent, goal oriented, happy individuals!

Kiley!

Kiley had her 2nd set of tubes put in 3 weeks ago and shes doing AMAZING! I have been keeping her out of water as much as I can to prevent infection! Her language is catching up and I love it!

---I want to have her hearing tested again to see what her adiogram looks like now! ---

We just came in from a weekend in Monterey so I'll post pics and more later!

Insurance approved!

--- Ethan's first implant has been approved by our insurance! I'm so scared!! I don't really wanna go through with this but, I know its going to help him! We're implanting him on Aug 11Th! During the last week of summer school his class all dressed up as doctors and nurses and gave him a CI simulation operation, it was so cute! A few of his classmates are implanted already so they already knew what was going to happen! ---

---Its hard making this decision alone! My husband although is a great hubby and dad just tells me "what ever you think will help him I'll go along with." I know I created this because I am a control freak but I wish he would just step up with a bit more insight... ---

---Ethan's school is amazing! Everyone who works there is so helpful and I thank God were able to offer our children the opportunity to change their quality of life! I can never thank the CCHAT center enough for all they do to help us help our children! Not only do they help our children learn to speak, talk, and listen..They're there to help us with IEP's, they give us tools and resources for our family to help them understand whats going on regarding our children's hearing loss. Were on summer break and we miss them! Everyone has become a part of our family! ---

Oh lifes fast balls

So, yesterday Ethan, me and Nina Coco went to meet with the cochlear implant team.....We're going through with it! They said that its going to be a bit more difficult to get the insurance company to approve it because he (Ethan) gets good benefit from his hearing aids....just not enough... but with all of our strong personalities we can make it happen.

He has a great vocabulary-he speaks well, but only familiar listeners actually understand him....(his own father has me interpret for him-which is irritating!) I always say he can have a billion words but if people don't understand him then its useless....He's made wonderful progress-He's so smart!

For the past month or so I kept saying it will help him, it will make school and social settings that much easier on him--convincing myself that I was OK with it, but in the back of my head I was hoping they would say that he wasn't a candidate!


When they were doing all the testing I was holding him...I could feel his heart beat pumping so hard and he was holding his breath just to try to hear what was going on.....It broke my heart....He's working so hard to get whats going on, No wonder why at the end of the day hes SO Pooped!

We had genetic testing done when I was pregnant with Kiley. I was told that although the hearing loss is genetic due to the connexion 26 gene mutation that it wasn't progressive....yesterday I was told that it is and they showed me his past audio grams that proved that in fact he has a progressive loss..

Next week they're testing Kiley...I highly doubt shes a candidate for an implant at this time. But who knows I thought Ethan would never be!

We're going to start video taping Ethan through out this whole process so that he can see why we decided to take this route....I hope it shows that we only wanted our children to have access to to every opportunity that we ALL naturally get...I want them to know that we love them and want NOTHING BUT THE BEST FOR THEM!

Emotions running HIGH!!

Kids are back to school and Kiley's first birthday is 2 days away....my heart is screaming!! For the past month i have been a cry baby! I don't know whats up! I've been hurting so much over my children's hearing loss.....I think it has a lot to do with Ethan's transition to a new class and watching Kiley's (Charlie as the family calls her) language improve.. You would think all this would make me happy and it does...but in a crazy way it also makes me upset...I am this control freak who has to have everything her way and I have NO CONTROL over this....I cant make it better with a kiss and I can't give them medicine to cure it. Everyone wants nothing but the best for their children and most of us do everything in our power to give them the tools to accomplish this...But, imagine not having the tools to give them or having to give up your entire life to find the tools that will better serve them....This all seems petty I'm sure, but I'm exhausted and I feel like a failure because I had great potential to be something they could look up to....I mean i look back on my life and I think to myself man I hope my kids have that drive I had and in some ways I still have..I'm still in college and I want to get a masters but at this time that's not financially feasible.

When we have children we want to give them in my case everything we didn't have and so much more! But we live off one income and we rent a town home that my family is outgrowing rather fast, I have a car that we pay way too much for and on top of that 3 children 2 of whom need hearing aids and all the expenses that comes with hearing loss. Its depressing when I have to make the decision do I buy gas for school the next day or do I buy milk....its frustrating!


I have been crying so much and I can't explain it to anyone because after all like my father says "it's just a hearing loss ...its not life threatening and just think they could be born with out one of their limbs" Who says this?? People who know Nothing about hearing loss and how difficult (not impossible) it is for ppl with hearing loss to become "successful." It's kinda like THIS IS NOT WHAT I WANTED!! stomp my feet and throw a tantrum! Oh the joys of motherhood!

Emergency Surgery......

So I didn't have a ulcer at all!! WTF! I could no longer take the pain and all the Doctor would do was prescribe me pills that didn't work!! He wasn't understanding that I was in PAIN!! I couldn't function----He ran 1 test and it showed that my liver test were extremely high..(normal 20/40 mine 480/560) He scheduled me a ultra sound but I was not going to wait another week...so my stubborn self went in to the radiology department of his office told them my situation and they squeezed me in..hahah...I was laying there and the lady asked me do you have a surgeon....I said "WHAT!!! what do u mean" She said she couldn't tell me cuz she wasn't the Dr. I told her u better tell me I feel like I'm going to die s some one better give me some answers! My Gull bladder had over 1000 stones which was causing all the pain and vomiting!!They rushed me to the E.R. where my husband was waiting....he was so scared!! Next thing I know they doped me up and the next morning they were preparing me for surgery....I had 3 c sections that were quite difficult but NOTHING felt as horrible as this!! I lost 17 pounds in less then 3 weeks...I'm feeling better now..thank GOD!! but I need to have 1 more small surgery to remove a stone that's lodge in my liver.