Shes doing great!

Its been a long 6 weeks since i last blogged, and if you had asked me 6 weeks ago how i was feeling about Savannah's progress i would have told you, that i wasn't happy. I was in a bad place, tired from the baby not sleeping at night, exhausted from the busy year & of course worried about Savannah's hearing & her tests. Of course i must have been the only one thinking this though, because even though Savannah had fluid in her good ear & was testing in the sev/prof range she was talking. Her Speechy said she was doing amazing, she was talking at age equivalent & saying things that some kids her age are not yet saying... Why is it that i do not listen to what people tell me? They are telling me Savannah is doing well & they have no concerns, yet here i am freaking out & wondering whether or not i should push for a CI?
I can honestly sit here now & remember that we have been told over & over that there will be periods that Savannah will have huge burst of Language & then times of nothing new at all. These times are when she is listening & learning & getting ready for her next burst... Well DUH! how could i have not seen this before??? They are right, Savannah goes through waves & right now she is sitting right on the top of a HUGE burst!!!!
I think my NY resolution is to seriously stop stressing & just relax & listen to all the great advice i have been given lately! LOL
I started using the Fm alot more around the house, in the car at the store & during activities in the house.
Ive learned over the last 6 weeks i do not give Savannah enough credit. This little itty bitty 21mth old is AMAZING! she really is! Anyone who has meet her will tell you that you wouldn't know she was deaf! She has come ALONG way since she was diagnosed & im soooo proud of her.
I have lost count as to how many new words we have had in the last few weeks, but to name a few are:

Thank you
Please
Drink (Dink)
Barbie (lol)
Ryder
Blake
Hayden
Nanie
I Love you
More Please
Drink Please
Nie Nies Mama
No more
Not mine
No mama
Stop that
over there
Shoes on

These are just naming a few (because i don't write things down & i have a memory of a shiv lol )of what she is saying, but she is putting 2-4 words together now & of course is still followed by mumbo jumbo , but alot of people have been noticing recently that they can understand her "talk". I am very slack on getting a video of her, i definitely need to capture all these words she is saying, its really awesome :)
She also had her 6mth check with the ENT surgeon who was extremely pleased at where Savannah was. She calls Savannah "an extremely good Hearing aide user." never heard it like that, but she is so right! Savannah has/is done amazing with her hearing aides & is travelling along wonderfully. We still go back for reviews every 6mths to make sure everything is ok still, but there is definitely no CI on Savannah's horizon at this stage...
She does have some hearing tests again next week, which hopefully be better than last time!!

That's all for now, everything is winding down for Christmas Break & thankfully as im exhausted!! Im actually heading off to New York City on the 30th Dec with no kids to visit one of my best friends that lives there!! very excited :)

When your up....you must come down

After a few months of feeling pretty good where we where at, today just made me realize that we are still riding that roller coaster, because we are now taking the turn down.
Savannah was due for some hearing tests this morning to determine exactly what she was hearing after having had her hearing aides turned up in the HF 3 mths ago.
She wasn't even in the booth for 10mins & the Audiologist said she wasn't responding to sounds she would normally. So she checked her ears & said they where blocked & that the ear drum wasn't moving...GREAT! So now Savannah cant hear anything out of either ear :( Not sure as to why this has happened as she doesn't have a cold, but now i have to take her to a dr to make sure that there isn't anything else going on.
I had noticed that she wasn't responding as well the last few days & wasn't talking like she normally had been, but didn't think much of it. So now even with the HA's in she isn't hearing much from her good ear. shes shifted into the sev/profound range :(
How long will this last i do not know, but this age is sooo crucial to learning & hearing new things & I'm worried that we are only going to get behind & fall back if this doesn't resolve itself soon :(
If only she had an implant in her profound ear i wouldn't be worrying right now, because at least she would be hearing something!
We don't go back for more tests until Dec 22nd now. Not wonderful timing with Christmas coming up, but don't have much choice :(
So hears hoping this clears up soon, otherwise I'm not sure whats going to happen.

A day to be Thankful, a day for Reflection a day for Thankyous & a day for LOUD shirts!

My day started pretty typical with a wake up call by 3 children jumping all over me & thankfully they did. I looked at the clock & it was 8:10am! I jumped straight out of bed & turned the TV on. Today was our very first LOUD SHIRT DAY & today started with an inspirational & beautiful story on a young boy named jack.

JACKS STORY


I sat in complete silence watching this segment as tears streamed down my face. Watching this young boy & what he has achieved is just amazing. For a parent like me who is still early on in the journey, this clip gives me hope, hope for an amazing future for my daughter.
I am thankful that there are organizations like this, that have only the children's needs & best interests first. I'm very thankful for early intervention. These amazing centres help deaf children to listen & speak, they are helping my daughter speak. How could you not be thankful! I'm also thankful that their are amazing mums out there like Jacks mum who are so open about their journey & share how just amazing their child is doing in the hearing world. Jack is such an inspiration.

Thankful i can not say enough, and over the last few weeks i have been busy spreading the word for loud shirt day, fundraising for Savannah's school & trying to get as much public & community awareness as possible. It was the least i could do & I mean what did i honestly think i could do? I didn't think much, but i even surprised myself. Ive even completely enjoyed doing it too!
To date I have raised $1590.00 all directly for Savannah's school! Savannah has been printed in 2 local newspapers & one having been on the front page LOL.
I also made some YUMMY cupcakes for the playgroup on Thursday & Today i brought Loud Shirt cookies i made to the mother goose program.


The cupcakes :)


Can you tell that someone liked them? lol


The cookies :)


Here are some pics of the gorgeous kids in their LOUD & proud shirts:)

So tonight i sit here whilst my kids sleep & realize how lucky we are & how lucky my daughter is to be where she is. Lucky she has an amazing family that love her no matter what, Lucky that she has 3 awesome brothers to protect her, love her & make sure she knows shes one of them.Lucky that she has an amazing school & staff that are clearly doing amazing things with her. But also very thankful for those AMAZING new & special friends i have made since we have started at the school. Friends that I never knew would become like our family & that will always be a big part of our lives. I'm lucky & so honoured to have meet these mums & their kids. I'm so glad that Savannah will have some lifelong friends too. And of course those people i have meet because of blogging!
Today has been an amazing day, not only because it marked our first of MANY MANY more loud shirt days to come, but it made me realize that we are at a really happy place with everything right now.
As a family we are surrounded by some AMAZING people. So thank you to everyone that has supported us, donated to this wonderful cause & of course those that have been great friends to us. I may not say it all the time, but you guys are awesome & love you all.

So now onto my next adventure (which will be saved for another time) Some may say Ive found my calling, but i say Ive found my passion.


HAPPY LOUD SHIRT DAY 2011 ;)

Mummy what are those??

I remember in the early days wondering if people would stare at Savannah's hearing aides, or whether kids would pick on her, or if people where talking about her wearing them behind our back. Along the way i have definitely noticed whispers & stares from onlookers, most probably curiosity more than anything. Funnily enough people always seemed to admire that darned pilot cap she wore (goodness knows why LOL) & where always asking about it, of course i would always tell them what it was for. I knew that one day, someone would wonder about them & ask why shes wearing them...And this day was to be it
I guess as time goes on, i become more & more & more forgetful that she is even wearing them (LOL) i honestly do. Last week i took the kids to the Tesselaar Tulip Festival. Spring is upon us & i wanted to enjoy as much of the nice weather (back to rain now) that i could.
We where waiting for Savannah & Blake (my middle son) to go into the Petting Zoo & i noticed this young girl (no older than 5) buzzing around Savannah like a little bee (lol) didn't think anything of it of course until after a few minutes i had noticed the little girl trying to touch her hearing aides. Savannah had obviously been aware by this stage & was pushing the girl away, I stepped over to grab Savannah & before i could the little girl blurted out "Mummy what are those in her ears!!??"
The mum looked embarrassed & quickly told her daughter that they helped her hear. The little girl being so inquisitive continued with "but they are weird, i don't wear them"
Her mums response was "well she thinks your weird wearing a headband" her mum turned to me apologized & walked off.
Kids are so honest & i love that!

By this stage i had grabbed Savannah & picked her up, but was so annoyed at myself that i didn't say anything! it was almost like my mouth was glued shut LOL and if you know me that is very rare.
I would have loved to explain to the little girl what they where for & why they helped Savannah, it made me realize that I'm bound to get more of this as she gets older. Kids are interested in things they haven't seen before, and of course once interested ask lots of questions.
Of course this got me thinking about Hayden going to Kinder next year, he will start having new friends & of course they will be interested in why his sister wears "those things" lol. What will i say to them? And do they need to be told before they notice her wearing them?
Oh boy, ive just realized this is new territory for me. Might be in for some interesting times ahead..lol

LOUD SHIRT DAY!

Show your support for such a wonderful cause LOUD SHIRT DAY 21st Oct 2011, and a cause so close to my heart!
Wear you loudest & Proudest Shirt & Raise money to help Deaf kids talk!
I have been fundraising myself in support of Savannah's School Taralye. You can easy donate to this wonderful fundraiser or There is still time to register to hold an event at your workplace, school or Childcare centre & most importantly all the money raised helps deaf kids learn to listen & speak!


Loud Shirt Day Link

My fundraising page

Savannahs First Concert

Savannah went to her very first concert today. I was a tiny bit worried how she would handle it, wasn't sure if the noise would be too much for her with the hearing aides. Surprisingly she did amazing & enjoyed the concert more than her older brothers did! LOL she was up the front dancing away with other kids the entire show! Not sure she could really hear everything but she definitely felt the beat!
Justine Clarke is a child Performer in Australia on the kids TV station called ABC. She is amazing & Savannah LOVES her! here is a clip of one of Savannah's favourite Songs & a video of Savannah dancing.

Her Favourite Song & Singer :)

Savannah talking

Here is a tiny snippet of Savannah saying a few things. It was pretty late & she was pretty co-operative which was nice...But she had to hold the music frame otherwise she wanted my iphone lol

Learned My Lesson

After Savannah's Nap today, just like any other day i put her hearing aids straight in.
Today was not different.

We wandered over to visit Nana & Pa at home & show them Savannah's new stylish shoes. My Mum was on the laptop & Savannah was on her lap playing around with it. My Dad called out to Savannah numerous times & no response. I had to chuckle thinking that she was ignoring him.
He continued to call her name & still no response.
So he clapped his hands really loud & Savannah turned her head, so i didn't think much of it.
I commented on how it was strange she wasn't reacting like she normally would & especially not to her name.
I noticed she had started playing with her mould & digging her finger in, so i decided to take the hearing aide out & check that it wasn't full of wax. I grabbed it & checked it & then put it up to my ear.

Oops. I had just realized that the battery was dead. The hearing aide battery must have died before we had come over.
No wonder she wasnt replying to her name! The wasnt going to be hearing her name from the Profound ear!
I cant even remember the last time i changed it either :/ How bad is that!!
I learned my lesson today! complacency=bad mama!

Happy with the road we are on..

As of today i realized that right at this point in Savannah early intervention I am Happy with the road we are travelling on.
Let me tell you though, it hasn't been an easy one so far. Savannah's Hearing Loss is just so borderline that questioning the CI is only natural.
The decision to step back from the CI clinic for the time being was actually made by me but i decided from their response. My last post made me realize that i wasn't so much focusing on Savannah's learning anymore, but worrying about the what ifs & the things that have no yet even happened.
After speaking with the CI clinic to try to book an appt to be re-evaluated i was pretty much point blank told that their decision has not changed & unless Savannah's hearing loss has dropped they where not going to give me an appt.
You would think after ALL of this i would have been angry, livid almost, but strangely i hung the phone up with ease.
I just felt like at this stage i needed to refocus on Savannah & getting her to listen & speak & not worry just yet about getting an Implant.
After a routine visit with our audiologist, i asked her if the volume & settings on her hearing aid where able to be tweaked to try give her more access in those high frequencies.
She figured it wouldn't hurt so she changed them for us. We are due back for a set of hearing tests & assessments to see if this has given Savannah anything more in those HF sounds & to see if we are able to shift her booth test down to 30db in those frequencies also.
Long shot i thought but hey what did we have to loose? I figured we need to try EVERYTHING before we turned back down the CI road.
So far we are 4 weeks into the new setting changes & let me tell you, i am just BLOWN away by how Savannah has been doing. We really hadn't had many new words or anything exciting to share but this past 4 weeks has just been CRAZY.
How strange to say that my deaf child does not STOP talking! lol All day everyday Savannah whether it be talking to me or pointing her finger & yelling at her brothers she is constantly showing us that she is absorbing EVERYTHING!
to date her new words are:

Apple
Banana
Flower
Shoe
Cheese
shhhh (puts her finger up to her mouth)


She also can sing the old MacDonald song " eee iii eee iii ooooo" LOL
Sings twinkle twinkle in the cutest little voice lol

I'm sure Ive heard a few more in there but we haven't heard them again so ill keep those for when shes really saying them :)

I'm starting to get a little more reassured that right now for us & Savannah we have chosen the right path with the Ha's and are happy with the road we are on.
Its nice to actually say that, to not have to worry about anything other than focusing 100% on teaching Savannah language.
I'm feeling excited, but again keeping our options open for the near future. She has a wonderful team of professionals keeping an eye out on her progress & making sure she is where she should be.
I may not be able to put my feet up just yet, but i can sleep much more soundly at night :)

Water proof Ha's!

How absolutely AMAZING is this! A trial conducted in Australia on the new Siemens Aquarius Ha's! just brilliant! i Hope phonak bring in something like this because I LOVE our phonaks!

Welcoming input & experiences

So basically I'm still sitting on the CI fence. I have been back & forth for weeks now. Last week after looking back over Savannahs Aided Audio gram, i had noticed & realized that her moderate ear (the "good" ear as we like to call it) does hear all speech sounds UNTILL the 4000Hz where she doesn't start hearing until 45db.
To me i had never thought anything of it to be honest until our speech coordinator pointed out that Savannah is clearing missing hearing the "f" & "Th" sounds which sit at 30db on the 4000hz.
How could i have missed this??? How on earth did the implant clinic send me away when my daughter isn't hearing everything
she needs?????
Apparently i was informed that these speech sounds can be made even if a child isn't hearing them?? (would love some clarification here)
I am starting to wonder if I'm actually being pushed aside with bogus information or if this is actually correct?
Can a child that CANNOT hear the "f" & "Th" Sounds truly be able to speak & learn speech??
As i have said before my daughter is deaf regardless of Ha's or not, she was born deaf & will always be deaf BUT why on earth is she not a candidate??
Before i go back to our Audi on Sept 1st I need to get some more info & feedback I would like to welcome ANYONE who is willing to share any experience with both Ha's & Implants that understands what I'm saying, or wears Ha's & is not able to hear some of the speech on the 4000Hz.
Are these as important as i think they are? Will this hinder my child? Remembering that my daughter is profoundly deaf on her right ear.
Thanks :)

Excuse all the background noise. there was quite a few people watching her when it was filmed lol

Is it ever enough.

Yep that's me this last few weeks. Is it ever enough with what I'm doing with Savannah?? Why doesn't she say more for a 16mth old? Are the HA's really working? Would the CI really help her & make a difference? I don't know if it is ever enough what i do :(
The reason i started thinking about this more was because Ive seen first hand children that have CI's are just amazing. Talk normal, hear amazing & are doing wonderfully. In all reality Savannah is profoundly deaf in her Right ear. Yes the hearing aide is helping BUT its not giving her the speech she will need. So to have her rely on her left ear solely is alot to ask.
Your probably asking Why have i started doubting myself & Savannah so much? Well simply because I don't know if shes progressing now like she should be. I was asked by a mother the other day who's daughter has Bilateral CI's why Savannah has not been implanted in her right ear? I kind of looked dumbfounded at her, but in all reality i had asked this question over & over myself. The only answer i could give was that the implant clinic no longer holds her as a candidate because her left ear is "to good." the lady looked at me with this WOW face, then proceeded to tell me that they most likely are not implanting her because it costs too much. Then she proceeded to continue to tell me that having 2 ears that can hear would be better than having 1 decent & 1 not so great ear.
Is she right? Most definitely.
I feel like the road is getting bumpier & bumpier & bumpier. The money is most definitely the main factor as to why the wont implant her. But what upsets me is, am i holding her back from having the best? If she had the 2 ears would this help her more?I know children with hearing loss should not be compared, BUT when you see children that are doing so much better at the same age, it makes you wonder.
Did i do the right thing with the Implant? Should i have fought harder for her to have a CI?
When does this get easier?
The questions, the worry the wonder... I just don't know where I'm at these days.
It could be alot worse..yes i know i need to tell myself this constantly.
But shes my little girl & all i want is the best for her...whatever that may be.......

its been awhile.

I have been meaning to write a blog for i don't even remember how long now. Ive sat down a few times to write, but each time i am disturbed by a baby crying or one of the kids needing something. As Ive said previously blogging is not something I'm terribly "good" at lol, Ive never had the knack for English class or writing. was absolutely terrible at it. So i find it hard to write this. So bare with me whilst i update on how Savannah has been doing.
We have had a pretty amazing/roller coaster few months.
Savannah has been doing exceptional. Her comprehension & language is flourishing & she amazes us everyday with new words & sounds.
So far some of her new words are :

"don't"
"don't do that"
"bad"
"stop"
"sit down"
"down"

I'm pretty impressed with her vocabulary at the moment.
Her comprehension on the other hand is just AMAZING!
She follows commands like:

"go get your shoes from your room for mama"
"feed your baby"
"burp the baby"
"bring mama a book"

We can sit & have a tea party which is so cute now. She understands when i ask her to stir her tea lol or take a drink. She amazes me everyday how much she is grasping & learning.

here is a clip of her saying "don't" its near the end of the video but we had to stage her brother to push her so she would say it for the camera..lol




I have also noticed Savannah recently taking a huge interest in music. She LOVES to dance around the house with the music on. She is so cute when she dances, i need to catch this on camera!

So a few weeks back we had a small fumble along the way which ended up being nothing, BUT for a moment there we thought Savannah's moderate ear had progressed to profound. She has some routine unaided hearing tests & she had a 35db drop in her left ear (mod ear). They checked for fluid & there was nothing, so of course i panic & have a mental breakdown. Our Audi thought she might have a progressive loss but we needed to re-check the results to confirm. So we went back in 5 days later, thankfully to find out the equipment was not working properly & her moderate ear tested back at the normal results..YAY thank goodness!

We also received Savannah first results of her 1 year testing. Not the 12mth testing but the testing they do here once you have seen your speech pathologist for 1 year. Savannah's results came back that she is age equivalent & sitting on the high end of her age. Which is amazing &i couldn't be happier!

I think that's about all the big news in our camp at present. Savannah keeps me on my toes, she is the climber of the family & is continuously climbing anything she can. drives me nuts. Its winter here & touch wood we have stayed germ free for the last 3 months! 1 more month & spring will be here! yay!
here are some recent pics :)

Im now convinced...

Savannah can hear! We had her Aided hearing test today & i was pleasantly surprised at her results...in both ears!
I am now convinced that her left ear is getting everything she needs in terms of speech. Her right is probably getting some not all but enough to help the left ear.

Here's the Audiogram

First Exposure to Sign Language

So when we found out Savannah had a hearing loss, we made a decision to bring her up to learn oral language. To listen & to speak. ASL never even crossed my mind to be honest. I don't have anything against it, but being an hearing family our decision was made easy for us.

We had always thought about taking family Sign Language classes so that we could all communicate when Savannah had her "ears" off, but we decided against it when we found out the cost.

So today i took my eldest two boys to the park for a play. The park is new & it was really cool.
My eldest Hayden kept walking over to these small signs & was really intrigued by them.
I walked over to notice that they where sign language signs. Every letter of the alphabet was around this children's park. It was awesome!
Being that we have never used ASL or spoken about it, i found it really lovely that my boys where interested & where trying out all the signs. The excitement when we spoke about them & they tried to master it with their fingers was VERY CUTE :)

So maybe its time to introduce some sign language to our family. After today i think it ll be really great for my boys & myself & hubby to have a special bond as a family to communicate with Savannah when she is unable to hear us.


here is a video i took & a picture of the boys

What we have so far....

Finally I sat down the other night & wrote down everything i heard Savannah say & do. I was actually pleasantly surprised. Her comprehension is most definitely age equivalent, & I'm pretty sure so far we have some age appropriate language.
This is what she is saying :

Mama & Mum
Dada
Nana
More
Up
Bye Bye
Hi
No
Ta
Baby (but more like Aye-be)
Stop (she isn't saying stop but understands it & puts her hand up)

we are also getting these:

gagaga
Bubba
Kakaka
Naaann
Hhhehehe

Animal sounds are:

Moo
Woof woof
Fish (popping sounds)
Duck ( we are getting ack ack)


I'm sure there is more, i was only watching her for a short time. Her attention span is terrible! lol
Today at one of the programs at her school, one of the mothers who's son is older than Savannah, commented that her speech was very clear. I was quite chuffed to be honest. I guess being around her all the time i don't see how much she is doing.
Maybe There was reason all along to hold her off the CI. I think mostly i have forgotten what a 14mth old should be saying...i tend to think she should be talking like my 2 & 3 yr old..lol
I am happy where we are at. But still worried that she she may not be accessing all sounds. But i guess its a waiting game for that. She is still so young.

The decision is final....

I spoke with the Implant clinic today in regards to the final decision for the CI for Savannah. They had a Medical Board to discuss the results from her day at the clinic last week. Basically they said what i knew already.
She is definitely not a candidate for a Cochlear Implant.
They will however review her in 12mths time to make sure her speech & language are coming along.
The main reason for their decision was that they do not think implanting the right ear will make any difference what so ever to what she will hear. hmmmm not sure if that sounds right to me..??
Did i tell you i LOVE Australia for free health care BUT i HATE HATE HATE that i have no decision in this & even if i wanted to implant her they will not do it.
Makes my decision to want to move back to America that big more incisive...

She is having an aided audio gram next Tuesday & now that she is older im hoping for much more reliable results. I will post the audio gram once i get a copy.

I have also been quiet slack on keeping a record of "new words" & things she is saying. I don't have a video camera i only have my iPhone & that's quiet hard to capture when its just me trying to video & talk to her..lol
I do plan on being a little more pro-active with recording results now though. No more excuses! lol

Yesterday was our 6mthly CI review appt. It was a tough 5 hours of tests not only for Savannah but for me! I had to bring Ryder as i was feeding & of course the appt was right in the middle of her normal day sleep. So trying to keep her happy & attentive was a job in itself!
I'm starting to really not like going to the implant clinic, i come out of there every time more upset, emotional & really confused as to where we need to be with Savannah.
Everyone seems to have a different opinion as to what we should/shouldn't do. At current her hearing loss has had no change which is a good thing. Here was her Audiogram unaided.
The Audiologist explained to me that he isnt sure whether or not she will be getting all the speech sounds. She is too young to really know. We definitely know that she might get some things from the right aide but generally nothing more than directional. But at present he is not recommending an Implant for the right ear!!??
My question to him was basically, why would she not be recommended for the right ear (profound ear) if you think she isn't getting everything she needs for speech from the left? With today's technology why could my daughter be left behind in another 6mths time if in fact she isn't receiving everything she needs?
I really did feel like i was talking to a recorded voice machine. His response was the same over & over.....
What i couldn't understand (and please shed some light on me if u know anything about this) but they said even if they did implant her right ear she would only hear as well as her left aided????? hmmmmm no please correct me if i am wrong...BUT i have read many a blogs or posts about children with implants that had profound hearing loss that are now hearing at 20db or even less! So why would my daughter be different???
I would honestly think if she had the hearing aide & an implant she would have 2 ears that could hear all speech...is this not better than only having 1 ear to get speech from?
Am i asking too much from this technology? Am i selfish for wanting the absolute BEST for my daughter & if that means an implant to give her 2 ears that give her sound & speech from?
Maybe i am still trying to grasp alot of things about this subject, or maybe i am in la la land thinking that with the latest technology my daughter should have perfect speech, of course i don't expect the aides or implant to give her "perfect hearing" but i do know that we can expect perfect speech.
I have meet many children that you would not even realize that they where deaf or had implants until you saw the processor. that's what i want for my daughter. Is that not realistic?
The Audiologist thinks that Savannah will most likely not have perfect speech & that she will sound somewhat "deaf" if that makes sense. What annoys me the most is that her review letter 6mths ago recommended she be considered for the implant as it would help her gain more sounds & be able to identify where they are coming from & allow her more access to speech.
Little did i know i actually have ZERO input into my daughters well being in this matter. I apparently am not a ENT dr nor do i have a degree to recommend her for the implant. So basically they are playing black jack with my daughters hearing!
Yes she is talking, yes she says quite alot of words & understands alot. But i don't know if she is where a normal hearing child would be.
When we saw the ENT surgeon he was actually no better than the Audiologist! He actually said she isn't a candidate for the implant at all! And that her hearing loss isn't clean cut? lol i really don't know how much more "Clean cut" you can get when the results are sitting in front of you! My daughter is profound in her right ear...that's pretty deaf if u ask me! And her mod/sev ear isn't a small loss its quite a sev loss!
I'm starting to think that our "free" medical services are starting to pull the reins in on the kids they don't think really need the implant..
They will not implant her untill there is evidence that the hearing aides are not enough for her. And even then they cannot guarantee her the implant! So i now have to wait another long 6mths to see whether Savannah will start talking or whether she will start regressing because she isnt hearing enough. Then if she isnt i have to wait untill some overpaid surgeon decides its necessary! At this point, im not happy where we are at. As i said, maybe i expect too much & maybe im being a tad over the top. But this is my daughter & i want the absolute best for her. That may not be the implant right now but i want it to be open to her in 6mths time.

So only time will tell. The Intervention Co-ordinator believes am Implant will help her dramatically so what do u do? They dont have much say unfortunately when it comes to this. I was really positive about her future & knew she would be ok, but now i am not so sure. I am seriously worried that she wont get what she needs & that she wont hear everything nor talk normally. Feels like im back at day 1 again. Not a fun thing :(

He Passed!!!!!!

Ryder passed his ABR! I am beyond happy!!! I was so stressed sitting there waiting for the audiologist to finish so i could know the results. He did so well & we are sooo THANKFUL that he has normal hearing. He did pass the Newborn Hearing Screen, but i found out later that they don't test under 35db here, so he still could of had a Mild Loss.

I wish i could explain how happy i am that even though we just found out about the connexin gene, we have 1 child out of the 4 with a hearing loss.
Very thankful to say the least.
But also very thankful to be Savannahs Mama & go through her journey with her. She was obviously given to us for a reason ;)
I am one proud mama of 4 amazing kids :)

here are some pics

My 4 Kids
Savannah

Savannah & Ryder

Savannahs a Big Sister!!!!!!!

We would like to welcome the Last & final addition to our family

Ryder Lee

born 12th April 9lbs 15oz!

We are still anxious about the hearing test which will be on Tuesday. (fingers crossed)

Another Pass!

My middle son Blake had his hearing tests yesterday & thank the lord he passed & was in the normal range!!!
What a sigh of relief!
I feel very lucky & Blessed that the boys are both hearing especially seeing as we have the Connexin 26 gene in our family.
So 1 more ABR to go, this baby is due next week & will be here by next Friday as the booger is breech :(
So fingers crossed he is fine too!

HAPPY 1ST BIRTHDAY!!!!!!!

Yesterday (17th March) was Savannahs 1st Birthday! 1year ago my baby girl was born!

WOW time truly flies, but more so what a year it has been!
Whoever thought after such a blessing we would have gone through the biggest emotional roller coaster of a year! Of course i wouldn't change it for the world, it has made our family stronger & opened my eyes & changed me in a way i could never really explain. All for the better of course :)
Savannah still ceases to amaze me with how much she is learning with just her hearing aides & how well she is talking & starting to understand what we are saying.
Her hearing loss is quite severe so for her to be doing this well is always reassuring.

So far to date Savannah can say:
Mama
Dadda
Nana
Bubba
Up (which is her new word)
Ta (which we have only heard a few times as this is new too)
Brmmm (which is a VERY new word that she is recognising as the sound for Car)

I am happy at where is she, of course more words are great but we are working on them!

She has taken 2 steps & really wants to walk but isn't quite their yet which is ok, but with the new baby due in 3 weeks i would LOVE for her to be starting to walk to give poor mamas back a break..lol

She also has 4 teeth now, 2 top & 2 bottom & boy oh boy this baby girl does not like teething! :(
Nothing seems to work for her, so its basically in bed with us, or 2-3 bottles of milk a night! grr
We also have to use the cap when shes teething as she just refuses to keep the hearing aides in, not a biggie but i LOVED not having that on, but its not all the time so it isn't too bad!

We had a birthday party for Savannah a few weeks ago & she absolutely loved it. I did notice though she refused with every power to not have hearing aides in. I think with all the kids & adults there it was just overload for her & she really didn't like it. I also didn't want to put her cap on either so i let it go for the afternoon, but as soon as the guests left she was quite happy to have them back in.

We are appt free for a few months, only have our speech therapy & deaf school programs which is on Fridays, so when we revisit the implant clinic in May we will know more & most likely have a definite answer on whether or not Savannah will be implanted!
So ill keep updated when the time comes.

Here are some pictures of Savannahs bday Party & Her bday yesterday :)

Mixed Opinions

So if you read my last post, you would know where we currently stand on the Implant situation.
Well....today we had Savannahs 1yr appt with the ENT. She obviously receives all the reports & progression letters on Savannah to read up before our appts & so she can follow Savannahs progress along the way.
Well today she gave us yet another opinion on what we should do about the implant.
She recommends that we continue with the hearing aides & once necessary (if at all) then review the implant. She told me that she has seen many children with the similar loss as Savannah, some that have never needed the implant & have progressed wonderfully with normal speech & some not so well. But she did say that she believes that Savannah is getting enough from her hearing aides. From seeing her today & reading the reports she really does think the Left ear is working with the right ear (with whats left of the residual hearing) And carrying her along nicely.
OK...so where does this leave my scattered little brain?
I'm confused once again! The implant clinic recommend one, The Speech therapist thinks its a good idea to have 2 good ears, The ENT thinks we should not play with her residual hearing if its working for her...???
Me & Hubby had just decided that we where going to pursue the implant for her right ear in May when we go back for the review, but now i am not so sure again....
decisions decisions........
Tomorrow will give me a little bit more idea of what she is hearing as she has her 1yr hearing tests & hopefully is able to give us a better picture of whats she is hearing from the tests that they ran 4 mths ago.
Fingers crossed anyway.
But i know we are back to the drawing board to wait it out & see how she does..

Sibling ABR testing

So my eldest son Hayden who turned 3 in November had an ABR test today.
I was extremely nervous & anxious to know if he even had a mild loss without me even knowing.
Hayden did have a newborn hearing screen when he was born as he was born in America, but the genetic counsellor still told us it was important to have him tested again to make 100% sure he had no hearing loss.
So I'm extremely happy to report he has perfect hearing!!!!!
What a relief!!!

Next is the little fella Blake who wasn't able to be tested today, so his test will be done on March 18th.

Although i am not concerned one bit, now knowing hearing loss is genetic & that he didn't have a newborn screen i am worried :(

Will keep you updated!

Connexin 26

The title says it all. Savannah tested positive for the Connexin 26 mutation.

We knew she had tested positive for the Connexin Gene but we where unsure until today which one she came under.
Basically in a nutshell Each person carries 2 copies of this gene, but both myself & Alex carry a flawed Gene each. In Savannahs case we have passed both our flawed genes to her which results in the deafness.
What this means for her is, that she will definitely carry this gene to her children but it will depend on her future partner which will determine whether her children have hearing loss. If her partner does not have a flawed gene, their children will have normal hearing but will be carriers. This was what i was so worried about. I really thought because Savannah wasn't hearing that her children no matter what would be deaf also. So I'm so glad to have received this news.
It also means 1:4 chance for this new baby to have hearing loss, 2:3 chances of being a carrier if he doesn't have hearing loss & 1:3 chance of being completely normal & having 2 normal connexin 26 genes.
The two older boys will not be tested for the gene, but the same applies to them. 2:3 of being a carrier & 1:3 chance of not having any gene flaws.

Overall we cannot change the outcome but happy we finally have the answer to why Savannah has her hearing loss.
After decades of this gene being in both of our families, all it takes is to meet your lifelong partner & for them also to have a flawed gene to as i like to put it "activate" the hearing loss.
here are 2 pictures to explain a little better than i probably can.

This picture relates to Myself & Alex & the kids.



this picture relates to Savannah & her future partner





We are glad to have found out what caused Savannahs loss, it doesn't change anything for us, other than having the knowledge on how this effects the kids later in life.
Doesn't matter whether or not this will effect our upcoming addition, we are blessed already to have 3 healthy children & 1 which happens to have the hearing loss.

Its definately a BREAKTHROUGH!!!!!!!!!!

Yippeee!!!!
5 days & NO pilot cap! The small things that make life just that much easier & more pleasant!!!
My girl is growing up!

Finally a Breakthrough????

Its been 2 days, yes 2 days since Savannah has not worn a pilot cap ALL day long to keep her hearing aides in! Im not ready to jump to the sky just yet....but could this possibly be the breakthrough i have been waiting for?????
Time will tell, but so far things look good! boy its so nice to see my baby with all her beautiful hair out :)

So i haven't posted in awhile. Not really sure I'm very
good at this writing thing, and I'm sure there isn't many people reading it. But today i feel like putting some things out there may help me shake a few feelings i have.
A few months back we have some assessments done at the Implant Clinic. I thought most of the testing was pretty good & we came out knowing that the Implant at this stage was an option but they where certain it wasn't an option for her right at that point.
Today the "formal" letter arrived in the mailbox. After reading it & re-reading it, i actually feel like i have made some decisions that maybe i shouldn't have, maybe i was hearing what i wanted to from them (being the experts) and maybe they where not being completely upfront when i saw them & spoke to them.
Either way whats done is done & we are 2.5 mths past the appointment with amazing things from Savannah.
Anyways back to the Letter. Basically it outlined what they tested & how they went about their testing. Her hearing tests from her audiologist & the CI audiologist where conclusive of a Mod/Sev loss in the L & a Profound loss in the right.
At testing age her age was 8mths 2 weeks. Here are her scores:

Sub scale Standard Score Age Equivalent
Auditory Comprehension 79 7 months
Expressive Communication 98 10 months

TOTAL language score 87 9 months



I think if Savannah wasnt saying anything like she is now, i would probably be worried, don't get me wrong i am still worried. Maybe the Implant with the Mod/sev ear will be amazing for her & she will not have to worry about trying so hard to use the one good ear she has. Then i think what if the good ear is enough for her, why put her through the extra tests & surgery? Why does the decision have to be so hard? It would make it so much easier if she could simply just say "Mum i can hear you or yes i understand."
Instead i have to make the decisions on her behalf, but what if they are the wrong ones? what if i should have gone ahead with the implant in Dec & not wasted all this time? I know now that there is nothing more i can do with the CI clinic until May when they re asses her, is it wrong to hold some hope that things will continue going wonderfully & we will surprise them? That's what I'm hoping. I guess maybe deep down i haven't accepted she might need the implant. I see so many wonderful blogs & stories on other children & babies with CI's that i know they are amazing & wonderful. They could open up so many different avenues for her. So why am i so afraid of making a decision?
I think giving me this 6mth break from the Clinic & constant appts will really let me know whether or not Savannah progresses. She is doing wonderfully now & her speech therapist is extremely happy at where she is for her age. But that could change at any day.
But what makes things a tiny bit easier is that i know i gave the hearing aides more time to work if they are all she needs. When we re-visit again in May the drs will then make the call as to her surgery & if she needs to have the implant.
Wish there was a button to fast forward in time & see how things pan out either way so that a better informed decision can be made..lol in my dreams right.
Anyway for the moment we will continue what we are doing, savannah has more hearing tests in March & then we will wait untill May to make the CI decision.

On another note Savannah is almost 1! She just cut her first tooth & Her bday party is in 2 weeks time. So looking forward to it. No sign of walking just yet. Just pulling up on the furniture & walking around on everything.
Our final genetic counselling meeting is next week to find out the ins & outs of the connexin gene testing etc...
We are 7 weeks away from welcoming another baby into the family & will be anxiously waiting to find out if he to will have the gene flaw.


Well thats whats going on in our household at present. keep an eye out for more updated.

Good one Mama!

After months & months of guarding those tiny little hearing aides as best as i could, even though we have lost them, found them then lost them again, they have always made it back into our hands (THANKFULLY)
BUT yesterday the damn little things won & i took a defeat :(
Savannah was napping & i was scurrying around the house doing the cleaning & laundry so i could rest before she woke up. Well after the full cycle on the washing machine had finished i proceeded to take it out....only to notice that there where 2 shiny little pink hearing aides starring me in my face!
I don't even think i took a breathe at that stage i opened the washer up grabbed the hearing aides shook the residual water from them, changed the batteries in some hope they where still alive....After turning them on there was no sound...
I was shattered literally had tears streaming down my face.
I am usually so careful with them, but today was not to be my day.
I rang the technician at the audiologists office & he told me i had to bring them in to be couriered of to the manufacturer (Phonak) and that they would make the final assessment as to new ones or they will be repairable.
9 working days it will take! :(
So I'm panicking wondering how on earth she will cope with 9 days of no hearing at all, of course its probably not such a big deal in retrospect but i have a tendency to panic. So after more tears & the poor guy feeling sorry for me, we where allowed loan hearing aides for her. Same settings not the same hearing aides.
So this 9 days could not go any faster i tell you! So there you have it, the hearing aides finally beat me, time to consider chains for these darned things.

Just a general update

Happy New Year to everyone first off.
I have sat here for the last week trying to write something to sum up 2010 & the achievements & obstacles we faced. But still cant really put words to it. It was a great year but a hard year.
I figured i would leave a small update of December but other than that leave 2010 in the past & focus on 2011.

I briefly wrote about our Implant clinic appts & Genetic Testing appts. Well i have some news on both. Just before Christmas the Implant clinic rang to tell me the Drs had decided Savannah will not be implanted at this stage & she will be in review until she is 18mths old. I`m not sure if i had explained we went back for further hearing tests & behavioural tests & they determined she was hearing out of her good ear as what a CI would give her! Encouraging news, but we are still open minded about an implant later on for her.

On to Genetic Testing, Savannah was tested for Connexin 26 & 30 both are for the hearing loss gene. I was adamant that Savannah was a "just happened" case & that their would be no other reason for her hearing loss.
Well wasn't i wrong!
The geneticist rang us just after Christmas & Told us that Savannah tested positive. Her hearing loss is in fact genetic :(
The news that i just wasn't expecting at all!
We didn't get much information over the phone, she didn't tell us which mutation she had or anything to do with exactly what it means for her & us, firstly me & hubby need to be tested & then she will give us everything we need to know on 22nd Feb.
So after accepting Savannah's loss & being pretty sure it was something that just happened, now we are back to the whole unknown.
With Baby #4 on the way this baby now has a 1:4 chance of hearing loss, not to mention we need to have our older two boys re-tested. Hayden was tested at birth and Passed (but that's not to mean he still doesn't have a loss) And Blake never had a newborn screen as it wasn't available here in Australia at the time. We dont have any concerns over their hearing, but now we still need to make sure.
I feel like after we finally felt confident in everything we are back to square one!
I will keep you updated on the results.

Just to finish up quickly, Savannah celebrated her 1st Christmas, her first words & started crawling all in December! So overall not a bad month!
To date Savannah can say: MAMA, DADDA & BUBBA.
this kid is unstoppable! I swear she uses every letter in the alphabet when she babbles to herself.
So far she looks to be heading in the right direction, the hard work looks to be paying off!
here is some pictures of her first Christmas & a video of her saying dadda.

So 2011 brings a few special things in the first few months, Savannahs 1st birthday & Baby #4's arrival!