2 year Assessment

Savannah had her 2 year assessment a few weeks back & we where given her results on Friday. Her results definitely showed us what we already knew, it was just nice to have them on paper. It was prefect timing actually as Savannah will be reassessed at the Cochlear Implant Clinic this coming Thursday.

When Savannah had her 1 year assessment she was 15mths old & scored Well above average with score of well into the  87th percentile, just to give you a rough idea of where she sits now :

I am being completely optimistic about these results because even though she isn't where she should be, we are working on what we need to do now to get her there. We have noticed her speech has declined somewhat & that things she was saying clearly before are not so clear now. So  I'm hoping we can get some answers at the Clinic within the week or at least know what sort of plan or outcome they have for her. Its a bit nerve wrecking not knowing,  but time will definitely tell. 

I can count to 10!!

We have been teaching Savannah for months to count to 10. She can now finally count to 10 pretty clearly, she thinks shes pretty good now.. i will admit it is very cute.

Just have to stay positive!

On Thursday we went into Australian Hearing to have some follow up hearing tests since the grommet went in.
We recently changed Centres to one right near our house,  the commute was becoming more difficult with 4 kids.
Her hearing tests didn't show much change, She did 5db better across the frequencies  & was testing at a severe level not a severe/profound level.  The audiologist also performed a bone conductor test as well.
We have had the bone conductor test before, but i really never knew much about it & whenever she was tested with it the audiologists never really gave us an explanation as to why they did.
Today we found out ALOT more about Savannah's hearing loss that i had ever thought. We have known for quite sometime that Savannah's hearing loss was caused by the Connexion 26 gene.
I figured it was pretty straight forward, after the last 6 mths of tests & then finally after 3 consecutive tests her hearing loss was changed to severe/profound. We knew this finally gave us the opportunity to get referred back to the implant clinic & have Savannah re-assessed for the implant on her profound ear. But before that was to happen they wanted to try the grommet, which of course we where happy to do.
 Its now been 4 weeks since the grommet was put in & her tests are only showed a 5db change. At first i was pretty excited about that, because that finally meant we could hopefully get things moving in the right direction for once, as its been a tough 6 months with having to go back & forth. Sometimes staying positive can be quite a challenge.
So when the audiologist wanted to test Savannah with the bone conductor i didn't think much of it. After all the testing was done, the audiologist explained to me she thinks Savannah has a Mixed Loss ( Sensorineural & Conductive). At first i was a little confused as to why on earth she would have this when clearly her hearing loss is from a genetic flaw. For those of you that arnt too familiar with a  Sensorineural hearing loss, it results from missing or damaged sensory cells (hair cells) in the cochlea and is usually permanent. This is what we knew & thought had only effected Savannah. But the audiologist believes that from Savannah's hearing tests both from Air & Bone Conduction that she is suffering from a Mixed Loss. The conductive loss is a problem in the outer or middle ear that prevents sound from being conducted properly is known as a conductive hearing loss. Conductive hearing losses are usually mild or moderate in degree, ranging from 25 to 65 decibels.
In this case, Savannah's conductive loss is not associated with fluid. Now that the grommet has been fitted the tests from the Bone conduction are still showing a huge discrepancy with the test that where done from the Tube phones.
I apologise if i am confusing you or am not explaining this correctly, because i am only trying to get my head around it all too. And i am only learning from what i have read online.
In a Nutshell, a person with Mixed Hearing Loss does not benefit from the Cochlear Implant.
 As you can see its alot to take in, especially seeing when i walked in the door that morning i was expecting to hear 

 "the grommet has worked, Savannah is testing back at a Mod/Sev Level" or  
"The results are similar & we are referring Savannah on to the Implant Clinic."

 So of course my heart sank once again. She explained that most likely the bone in the middle ear is chipped or broken. Although only an MRI can confirm this & even then it may not. They can only really continue to go off what her current & recent hearing tests showed and both had bone conduction test results as well. I did ask if a MRI was able to detect this, could she have surgery to repair it....no she cant, they dont do the surgery on small children.
So im not sure where that really leaves us? We have to head back in 6 weeks for another full set of hearing tests & then im not sure. Our bump in the road may be just a bit bigger this time, i may be full of tears just thinking about how uncertain things are right now, but Savannah continues to amaze me, that beautiful little girl has a smile that could change the world. And she is going to do great things we Just have to stay positive!

Grommet surgery

So at the crack of dawn (to beat the dreaded rush hour traffic) we headed into the city for Savannah's grommet surgery. I was a little nervous about the anesthetic, none of the kids had ever had it or any kind of surgery before, so i was a tiny bit anxious. I was also really hoping to get some answers.
Savannah was so well behaved apart from the fact she was STARVING! I mean try telling a 2yr old she cannot eat at 730am!  I was constantly having to get her little fingers out of her lunch bag until after surgery lol.
 Everything ran so smoothly i couldn't have faulted the hospital & staff at all. They where all so good with Savannah & where on time for everything (which with a 2 yr old is a big TICK for me!lol)
I think the hardest part of my day was having to hold her down when they put the mask over her little face. Not something i liked but at the end of the day it meant she was going to get a grommet & hopefully that would help drain the fluid.
Once she was out of surgery & had woken up i came back in & sat with her. The nurses kept telling me that she might not feel herself for awhile as the anesthetic wears off. Ummm nope Savannah was literally up & ready to party 20mins later... hahahaha

Once she had some food in her & was rested up the Dr came out to let us know how it all went.
So after months & months of fluid being on Savannah's ears, when she got into surgery they where dry. Absolutely NO fluid on her ears at all! They gave her ears a good clean out whilst they where there & still inserted the grommet into the left ear as precaution.But if there isn't fluid how does the grommet work? does that mean her drop in hearing is permanent if there is no fluid?
I had held a whole lot of hope on that little grommet! I was hoping it would be what Sav needed to drain the fluid & have her hearing come back down to mod/sev...
So now we wait, wait another 3 weeks for yet another hearing test. Not sure what this test holds because the grommet was meant to help her hopefully hear better, but now I'm not sure what we are to be expecting.
Even though today was not how i imagined it & yes we have taken yet another bump on this journey , we can only hope that in 3 weeks time we get some results we can finally move forward with (implant) or we can move quickly past all this & get Sav back on track!
At least she left today will a huge smile on her face again & waving at all the traffic as we left the hospital...lol she is always such a trooper!

stay tuned...

We have a date

for Savannahs Grommet surgery, June 18th.I'm relieved that we don't have to wait to long but glad it isn't sooner because she has just come down with a cold! Once the grommet is in we will have follow up hearing tests to see if its worked on August 13th. So hopefully in the next few months we will know exactly where we are headed with her.

On another note Savannah went to the circus for the first time this Saturday. At first she was putting her hands over her ears because it was really loud, but as soon as the show started & the lions came out she was fine. I was quite surprised at how well she did especially for her age & because i honestly don't think she could of heard much (it was loud enough for me!).
But she had a ball, got a little ratty towards the end but nothing food couldn't fix ;)

Wordless Wednesday

Where we are at

Today we saw the ENT to find out where we are headed with Savannah.

The ENT has decided to go with a grommet on her left ear & then follow up a few weeks later with a hearing test. The paperwork went through today so hopefully we will have a date for her day surgery to get the grommet put in by this week.

This is where we are at & she did tell us that this may not work because Savannah has had fluid in her left ear since July last year so the drop in her hearing could be from damage that the fluid has caused. At least its a start & we are happy that they wanted to go ahead with this before we revisit the Implant clinic.

So now we just wait & see how things go! Stay tuned :)

May 21st 2010 & now.

On May 21st 2010, 2 years ago today, we where given Savannahs Diagnosis. We were devastated. I remember this day like it was yesterday. Not only because we where worried & uncertain about her future but because we didn't know back then that she would be able to learn to speak. Our life changed instantly. But we realized that things could be worse, we loved her no matter what.We knew the journey would be a long one & that every day would be challenging trying to teach our daughter to listen & speak. But we where told by the time she was ready for School she would be talking like her peers. The early days where hard, all the appointments, the speech therapy, and the constant thought "Am i doing all i can for her."

Then the words started coming & we couldn't have been happier. It felt amazing to hear simply little words like "mama" come from her.

But we knew time would only tell to what extent she was really hearing with her hearing aides. Savannah at the time was not eligible for a Cochlear Implant because she had too much residual hearing in her good ear (mod/sev).
Even though at times i wished she was implanted, she then would show me how well she was doing & then i would be glad she wasn't. 

The last 2 years have been a rollercoaster of good & bad, i wouldn't have changed it, but today i still sit here writing with a heavy heart worrying about her near future. The biggest difference from 2 years ago to today is that she will speak just like everyone else, we just have to go through all of these hurdles first! And without the hurdles there really would be no journey.
Savannah has been doing amazing even though she is now hearing at a severe/profound, profound level.

Her expressive & receptive language is amazing & age equivilant but,

we wont know much more untill we see the ENT next week whether they will refer her to the CI clinic again or they will try grommets.There was some fluid present but a few weeks back the ENT was unsure if grommets where going to help.

 We have another hurdle to overcome, but Savannah is still doing great & is a trooper and we will continue to do everything we can for her.

We are so lucky that she is an amazing little girl  who smiles through it all.

Happy Mothers Day

I wanted to wish all the mums out there a "Happy Mothers Day"

I hope you all had an amazing day with your kids.

I  had an amazing day with my beautiful kids.

I truly am blessed with the four of them.

movies,pretzels & lots of snuggles on the couch! perfect!:)

i also got spoilt with some lovely handmade gifts from the heart!

I Love being a mum

B is for Butterfly

Today i took the kids to some Easter holiday activities in our local area. It was surprisingly a lovely afternoon. They had a butterfly tent where the kids where able to hold the butterfly's, then we headed over for some face painting & then Easter Bunny came greeted the kids with some chocolate.
The kids seem to enjoy these no fuss activities & so did i! it was easy & enjoyable.
Savannah was so excited about the butterfly's, she loved it. She also got 2 little butterflies on her arm by the face painter. She was stoked!

All afternoon she was talking about her butterflies....the only word myself or my mum could really understand was Butterfly...... But she knew exactly what she was talking about. She is so cute when she talks. :)

Happy 2nd Birthday!

It was my sweet baby girls 2nd birthday today! Cannot believe 2 years has gone by already! Couldnt be more thankful for such an amazing daughter! And what a 2 years its been! wouldnt change anything for the world!  Here are some pictures from her party today :)

Where is Ryder

I don't even know where to start anymore. As time moves on i should be feeling excited about Progresses we are having with Savannah. But it seems as time moves on I'm more &  more worried. Yesterday we finally had some hearing tests. The results where clearly showing a 10db drop in her mod/sev ear along the 2000 & 4000 freq. I have suspected some changes  in listening skills, comprehension & new language over the last 5 months. The trigger for me was the fact her language has really come to a halt. She was doing so well & now we haven't even been getting some of the easy words she used to say. I will admit, its becoming extremely disheartening.

The Audiologists have suggested to turn the volume up on her hearing aides as a solution ... BUT my main concern is, what if turning up the hearing aide is in fact distorting the quality of sounds she is hearing?

They also commented on the amount of Wax they had seen in her ears. So today i took it upon myself to ask for a quick sneaky appt with the ENT whilst we where at the school for playgroup. Luckily our ENT is awesome & said she was happy to clean out Savannahs ears! 

So she retrieved a very disgusting amount of wax & noticed Savannah has a double ear infection???? How on earth does a double ear infection go missed is beyond me! She is teething so it could be apart of that too?
So todays quick lesson was to get her ears REGULARLY checked for wax & other nasties!!

Straight onto antibiotics & what do you know, this afternoon Miss Savannah has been talking every ones ears off..Coincidence?? Maybe, but in the last few hours tonight this girl was listening & talking more than she has in the last few months! So maybe it was just some wax after all?

We are back to the ENT in 2 weeks & another round of Hearing tests as well so we will know more then! But for the moment I have strapped the FM on & we are going to work on some new words with her & it gives me some hope that this could only be a small issue & not a progressive hearing loss issue.

I don't even know where to start! its been so long since i have blogged, the time has literally just slipped out from under me! With Christmas, Summer vacation, my trip to NYC & then straight back into it with Kinders & School. To put it bluntly I'm exhausted already & its only feb!! LOL
Christmas was magical with my little family as always, was even better this year that the two older boys are starting to understand it more, Savannah was totally loving all the new toys & Ryder well he of course enjoyed the paper more than anything! LOL as always our kids got spoilt. Santa was cheeky leaving all those gifts ;)

Shortly after i left all my 4 babies with hubby for 10 days to visit my best friend who lives in New York. Had an absolute ball, the kid free time was awesome, but at the same time i missed them like crazy!!!

On my return we spent lots of time at the beach & the swimming pools with the kids, enjoying summer whilst it lasts! We didn't do alot of work with Savannah over the holiday break, i always feel guilty not doing it, but she enjoyed herself. We did see some things here & there from her, but we haven't had alot of "new words" for awhile. She does continuously babble all day long & never stops talking, but we cant understand her yet. As i said there are a few words here & there but not alot.

Savannah just recently started the Early Learning Program at her school which is she does for 3.5hrs twice a week. Shes not even 2 yet so i think that's plenty for her. She didn't do very well the first day i left her :( it was so hard, but i can understand because she has never been away from me since she was diagnosed. So the ELP program will be amazing for her! She gets better each session & hopefully it will help her language come along.

Because its been so busy in this house i missed my first ever hearing appt for her! It was meant to be a round of hearing tests too! I was shattered because we haven't had tests done in over 8mths & we really need to see whats going on. We couldn't get back in now untill late march & she has the ENT then as well.

We are slightly concerned that she isn't hearing as well as she has been. We have noticed she is relying on lipreading alot more & gets confused when we ask her things. Don't get me wrong she still does alot of things we ask, im just wondering if she struggles to hear what we are saying more. Hopefully when we do the hearing tests we can see whats going on.

 We are just cruising along with her & hoping that we hear some new words soon. With Savannahs 2nd birthday coming up this little Miss has really come into her own. She refuses to be dressed by me, she MUST pick her own clothes out...LOL lovely choice with the socks hahaha

We almost had a small breakthrough with toilet training, we actually arnt training her, but her older brother blake was toilet trained over christmas break & she figured she would have a go, she did well but didnt quite understand. And her personality is just amazing, she is so cute, cuddly & funny, but then she turns into a stubborn tantrum throwing nightmare..LOL the joys. but gotta love her ;)

Posting this link I found about the stem cell trial for hearing loss in kids, very interesting article & video :)
http://www.multivu.com/mnr/53686-cord-blood-childrens-memorial-hermann-fda-approved-stem-cells-hearing-loss

We are Alive :)

I know its been forever since i updated about Savannah, things have been so crazy here with christmas/holidays & back to school things, i promise i will finish the update i have been drafting for awhile LOL and get it posted shortly! Hope everyone is well & look forward to reading up on everyone elses fun :)