So far So good..

Yesterday we had some more hearing tests done on savannah. We where meant to have a full set but she had other plans lol. We only got through the aided tests but where pleasantly suprised with how well she did & how well she is hearing from her aides. The results show that in the Left ear (Mod/severe ear) she is hearing 45db in each pitch which means she is getting the entire speech banana!!! Her right is also hearing aided at 55db, which is not as good but still in the speech range. Wonderful exciting results. So far it looks like the hearing aides are doing their job!!! VERY VERY happy with this! She will continue to have hearing tests every 8 weeks to perfect her scores, she also needs to have a complete unaided test to identify where we are at with her hearing scores. At the moment they cannot move her category so she is staying mod/sev, profound. But seeing we havent done solid tests since diagnosis & since the fluid has moved they are sure this will change! So continue to to pray that she scores better on the testing to come :)

On another note, our audiologist has given us the green light for an FM system! Im sooooooo friggin excited! This will help her sooo much when we are in the car, out in public or noisey areas & at home when the boys are screaming. FM systems basically block out background noise so that she can identify sounds from the person speaking with the FM on. Its a great device, worth ALOT of $$ but its ALL subsidised except the icom system which is a proper fitting of the FM shoe on her hearing aides they are $680...So for now we have to get the free option which unfortunately will make her hearing aides heavier & bulkier but we dont have a choice right now. We are def saving for those icoms though!! lol

We had her speech therapist Julia come this morning & we are on the right track with savannah! She is doing wonderfully for her age & hearing & so far is sailing along with her hearing peers. Hopefully this will continue as well go along, but we are excited again for all the wonderful advancements that savannah keeps showing.

Great couple of days hopefully things will continue down this path, we have lots of homework to do with her & hopefully it will ALL pay of in the end!

Something interesting.

I found this today & thought it was a wonderful way to explain savannahs hearing loss. I hope you find it interesting

http://www.youtube.com/watch?v=TD5E88fFnxE&feature=player_embedded


Savannah is L- Moderate/severe R- profound

Results

Finally i got off my butt & went to the drs office to gets Savannahs test results. I dont think i have ever had a lump so big in my throat before. CMV is probably the worst thing Savannah could have, and i was worried this was her cause for deafness.
Thankfully Im excited to say the results of her tests where negative. There was no CMV detected in her newborn screening blood work.
I know this may not be all that exciting to you guys, But if any of you have read up on CMV disease you would see why this was our biggest hurdle.
Im so thankful she hasnt got this, even thought we still have no idea how this happened to her & we have many more tests to go, i dont think i could have handled her having cmv.
So yes this is the best news for us, I have accepted her hearing loss & half the time dont even think about it anymore, so when the genetics testing is done & if it happens to be that im not going to worry anymore. The worrying part is over, her eye test where clear & her cmv tests where negative!

Even more reason why i still think my baby girl is here for a reason!!!! <3

Taking strides...

We had our fortnightly appt with our Co-coordinator & speech therapist Julia. She is amazing with savannah. This was our second time with her & she is now doing home visits with us. Makes it much easier as savannah is more content in our house.
So far savannah is excelling wonderfully & at exact speed & stage as a normal hearing baby. She talks & babbles to herself, and you can hear the different pitches & tones she uses in her voice. I bet you never really took a listen or identified things like this before with your kids! I know i never did! With savannah we are being taught what to look for & what we need to be practicing with her. At the moment with aides in, she can follow sounds & noises, and she is starting to try repeat us if we talk to her. We need to concentrate on the vowls at the moment like "ah" "ooo" "eee" "mmm." Julia noticed she had already picked up the "ahhh" sounds & was making them...lol like i had any idea..hahaha
These are great milestones in a hearing impaired child. She made the "mmmmmm" sound a few times now & we are working on the "ooo" & "eee" sounds. I am determined to make her say mama by the time she is 7-8mths! This is my own personal goal with her.
Julia is very adamant that the hearing aides seem to be giving her enough of the sounds for her to be advancing like this. Im VERY VERY VERY excited about this. I always hold a little hope that they are working magically for her & that she indeed is hearing with them in.
She wears her little pilot cap all the time now (i have lost her aides a few times & am so paranoid of losing them for good!) She HATES the pilot cap on but she gets used to it after awhile. Ive started jazzing it up with ribbons & bow clips! i Had one lady the other day comment how cute it was & where i got it from..lol
On the 31st of this month is hopefully when we will get a better look at her current hearing levels. She will be re-tests in both ears aided & unaided.
Im nervous & excited! Im hoping for some great improvements in the Left & if we can get that right ear down to mod/severe we will be fine!
We are also keeping our options open for the Cochlear Implant in that right ear. We are going into the Clinic to discuss options for Savannah if in fact we will need one for that ear.

On another note our lil girl is growing up fast she is almost 5mths old! Almost sitting, shes doing great on her belly now & as of yet we have not started solids.
She weighs 15lbs at the moment & is growing nicely.

Hopefully in the next few days we will have the results of the CMV testing, so stay tuned ;)

testing phase...

We have decided that its time to move things forward & find out why this has happened to savannah. I think it will also help us close this door & be able to move forward more clearly.
We have started the paperwork for savannahs newborn screening test to be re-tested for CMV. It hasn't been too difficult thankfully, i assume this has been quite a popular test for families that are trying to also determine what made their child deaf.
Hopefully we should have results within 14 days. I really really hope that this isn't what she has got. This can cause ALOT more problems later down the track :(
I will keep you updated on the process, if its negative we are referred to the Royal children's Hospital for genetic testing, then off for an MRI.

Off the subject i thought i would tell you all excitedly that savannah started trying to roll. VERY EXCITING!!! she also has become much stronger in the neck & is moving quite noticeably on her belly in a circle! very exciting, because it gives us hope that she may not fall behind developmentally :)

Ill take what i can get.....

I wonder some days what it would be like to hear very little. Sometimes I just sit there thinking about what things would be different in your life? Even attempting to block my ears with my fingers feels weird. Have you ever done it long enough to notice what you really hear? I know i cant hear a great deal, but mostly i know its not clear. The workings of the ear has completely taken me in. I find myself constantly googling things about hearing impairment & how the cochlea works. Things i would have previously shrugged off. This has become a huge part of our life now. One that im finding extremely interesting & more importantly more comfortable with. There truly is a big wide world of technology & medical advances to help those with disabilites. Savannah is lucky to be born in the 20th century.

I went into our appointment today with a totally open mind, thinking that whatever happens with the testing happens. As long as the ears havent gotten worse then i cant complain right?

I really had to hold my nervousness in as i really didnt want to get my hopes up. But secretly i felt confident. Dont get me wrong i do understand that she will have damage no matter what, but even a slight 10bd change can make the world of difference!

Because savannah was now over 3mth, they can no longer do the ABR test on her unless they sedate her, and really whats the point? Australian hearing have a really great way to determine what children can really hear. As explained to me this test isnt usually conducted untill the child is sitting & usually at 6-7mths old. But she wanted to determine that what we had seen last appt & what i had been noticing over the previous weeks with her right ear (profound ear) was actually happening & not a part of my imagination! LOL

The ran a serious of beep tests from 0-110 decibels. Then tested each decibel for tone which is from 250hz-4000hz.

Just to quickly tell you, when you are diagnosed with moderate-severe deafness it also means you are usually tone deaf too. If you remember the graph i posted in my first blog speech sits at different tones on the chart. For the most part people with hearing loss have high pitch deafness as well. So along with the original diagnosis they also wont have the high pitch tones which are the constants (ie S,f,sh etc).
It can play a major part in their speech learning, which i never knew. I needed to know so that taralye could work around that & teach her how to understand those.

I was pretty much blown from my chair when she told me savannah isn't pitch deaf at all! Yep that's when i fell off my chair! This was the first of our amazing news for the day!!!!!!
Basically it means she is moderate-severe & that's it!!!! she can hear anything from 65bs upwards & from 250hz-4000hz! YIPPEEEE & i thought this day couldn't get any better! :)

So back to the testing, i was holding savannah whilst they had another audiologist analysing her responses to the sounds sent to her right ear.
I'm glad i couldn't see her face because it made me fell like i wasn't going to see something they may not have. This was their job their profession & they knew what they where looking for!

The test didn't go for long because it was only one ear, but when i saw the result card i was absolutely shocked! not only did she actually hear some of the sounds once again she isn't tone deaf in the right ear! Hey she isn't even completely deaf in that ear like first thought! i swear i was ready to shout out "HALLELUJAH"

She explained further that because of her age, the reading is only what they perceived she was hearing, babies tend not to respond to soft noises because they are still so young, and in savannahs case she wasn't even meant to be doing this test.
So she was steady hearing at 90db which is still boarder line profoundness...BUT its a massive improvement & she believes that as she gets older & more alert, she will be able to give us a better ready of what she is actually hearing. Their where other beep marks on the chart at lower dbs but as she said, they cant draw anything on that as its not consistent enough.

I'm not greedy ill take whatever i can get! And today we where really blessed to have had these small BUT amazing results for her! Especially on the tone front! OMG how amazing is that she can actually hear ALL the pitches!

That was basically it for the testing & then we went onto the normal appt things like moulds & her new responses & noises etc...
The last 3 weeks savannah has found her aides & has enjoyed taking the little buggers out constantly & throwing them thinking that she is cool...lol
The audiologist really couldn't believe that she was doing this at 3.5 mths! they have never had a baby so young pull them out like this intentionally! They average age of exploring them & finding the aides is between 7-9 mths. So we are sure that savannah is going to be quite the smarty pants ;)
we where given a pilot cap to keep the aides on & we happened to be the first to trial it. At first i was not even going to put the thing on her head it looked SOOOOOOOO UGLY! LOL
but you know what savannah makes it look ADORABLE! this kid makes having hearing loss fashionable as i like to say..lol


So at this point in her long journey I'm extremely happy that we are making even the smallest progress. I only pray we can make it to where both her ears have a fighting chance to hear the world as we know it. Just keep your fingers crossed for us because i know that ALL the support you've given so far has really helped & those prayers are being continuously answered! Its become quite clear this cheeky little girl is definately here for a purpose & a very big one at that...she is such a special lil thing.

xo

Eye Appt

Today was just another one of those "fingers crossed" days. Savannah had her eye appt to make sure there was no damage & that she had full vision. We have been waiting for this appt for the last 6 weeks!
6 weeks this has been sitting in the back of my mind, wondering whether or not something else was wrong!!
May i add that i will NEVER ever again take the 2 boys to one of savannahs appointments ever again! it was enough that i was stressing out, but these two tornados are just too crazy & energetic for a place like this! lol
So 3 hrs of waiting, 1 consult lady & 2 doctors later we got the " ALL CLEAR"! thankyou god!!!!!!!!!
One less thing to worry about, thankfully everything is ok, so i guess our ENT can go back to square 1 & cross of cmv from our list, and back to having no idea what happened to savannah.
But hey cant ask for everything, just so glad we have passed this hurrdle!
Onto the next...hearing tests on wednesday :)