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!

Check off Genetic Testing.....

Today was our Appt at the Royal Childrens Hospital for Savannahs Genetic Testing.
Wasn't all that i was expecting, they asked sooo many family health & history questions & they studied savannah like she was from another planet..lol The Genetic Dr said we can definitely rule out any syndrome for her as she is blossoming lovely. So as we had already completed the CMV testing (thanks to this paranoid mama who did it on her own when sav was a baby lol) we got to skip that test & go straight to the blood work for Connexion 26 & 30.
Taking Savannahs blood was absolutely traumatic for me as im sure it was for her. She apparently doesnt have "ideal veins" and when they drew the first vial they didnt get enough blood! ARGHHH!!!
i was a mess, bawled my eyes out hysterically as i watched my poor baby screaming her lungs out in pain :(
Not what i need at all!
Finally after all the commotion my baby girl got two band aids & lots of cuddles from her mama!

Apparently results are not ready for at least 8 weeks. So ill keep you updated on those :)

I took a video of her whilst we where sitting in the waiting room & the picture is of her on the way home in the car :)

New Appt date!

So i was informed today that our genetic testing appt for Savannah has been scheduled at another hospital as well & this one is on the 7th Dec!!!!

I am over the moon! I'm hoping we will find out before Xmas or just after if their is a genetic gene for Savannahs hearing loss! Now i can cancel the other appt & go ahead with this appt!

Seems like things are really shining brightly at the moment! Wont jinx myself but its nice for a change :)

Implant Appt Update.

Yesterday Savannah had her first appt with the Implant clinic & their team to discuss options for her. We meet with a lovely lady first & she was their to assess Savannah & see how she was progressing & to ask questions about how things have been going since she was diagnosed. Thankfully i had an extremely happy baby & all she wanted to do was show off, so she got to see the really vocal side of Savannah.

She was extremely impressed at how she was progressing & how she was vocalising.

Savannah at present is showing great signs of her hearing aides working for her. Their is still lots of work to do with her in regards to therapies, hearing tests etc... But so far she thinks Savannah is doing remarkably.

Of course i was quite chuffed at her comments as I have put alot of time & hard work into getting Savannah where she is today. We still have along way to go, but she is really starting to understand what I'm saying.

Basically the end result of the meeting with her was that Savannah be tested at the implant clinic to give them their own results for where her hearing is at with aides & without, then they want to do more assessments & spend some more time with her to discover more about her.

I was happy with what she had said so she sent us off to wait for our appt with our Implant Dr who was Dr. Markus Dahm.

The appt with the Dr was surprisingly short, I thought their would be more too it, but after he read the recommendation from the speech therapist we had seen earlier, he was adamant that Savannah was not a priority patient & that he wanted to assess her progress more over the next 4 mths. He also didn't want to order the MRI/CT scan yet as he feels at this point in time & with how well she is developing in all areas he doesn't feel or see the need to put her under general anesthetic to give her a brain scan.

I was a tad disappointed about that, as i would LOVE to know if her cochlears are fully formed or if she might have LVAS. But at the same time he explained that Savannah seemed to be doing wonderfully with her hearing aides & that he wasn't happy to proceed much further with investigating the Implant option just yet. Their is a check list of things they need to perform first anyway before they will go ahead & say she is ready for the implant.

On the 14th Dec she will have a full day of assessment back at the Implant clinic for Hearing Tests, Speech therapy & behavioural therapy.

All of this is information for them to make an informed decision.

After this appt they will See Savannah again late Jan 11 or Early Feb 11 To see where she is at & if they believe the MRI/CT is necessary they will go ahead & book that in.

So basically what we have come away with is that they are Happy with her current progress & feel she will come along way in the 4mths. They & ourselves(hubby & me) want to carry her as far as we can with the hearing aides & know if we do need to get the implant for her right ear, we are looking at after she is 12mths of age.

Her good ear is carrying her & looks to be carrying the right ear along with it.

I am thrilled that they have said this, i know their is plenty of more tests & decisions to be made in her future, but for now i am happy & content at where we are at.

I will Keep you all updated :)

BTW Savannah is going to be the princess of the family, we are having another Boy :)

`

An amazing read...

For those of you that are interested in reading into the story of how the cochlear implant was born or already have a child with an implant or hearing impairment, i recommend this book to you.
Simply AMAZING!!!!!
that's basically all i can say! I loved this book. Such an amazing Man Graeme Clark was!!

Happy Reading

Genetic Testing

Finally we got the letter in the mail for our appt for Genetic testing....Guess i would have rather not have opened it!

Jan 25th 2011 is the date for the appt, not sure its even the appt they will take blood or anything, but all i know is that we will probably not find out what caused Savannahs loss if there is a cause or genetic mutation until this baby is born :(

I wish we had started this process earlier now, but i guess if this baby is going to have a hearing loss too then its not going to matter what Savannah has or hasn't got etc.

At least things are moving ahead in the right direction!

We got an appt with the Implant clinic.....FINALLY!

Well I finally took things into my hands & rang the Implant clinic team myself to get an appt date. I have been waiting for months for this & didn't want to push the envelope to much but decided that if i want some answers before Christmas i better get moving!

So i rang the lady yesterday & of course to my surprise Savannahs referral letter had NEVER reached their office (so typical). I faxed her our copy (thank you audiologist for always sending us a copy of things) and rang back today to follow-up. Well FINALLY we got a date for our appt & of all days we had to get the appt we got the Appt on 22nd Nov (which is my eldest sons bday). Typical once again! lol

I'm not complaining at all, but the lady did say the appt will take 3-3.5hrs (god knows what its all going to be about) But now i have to find a babysitter for the boys! ugh

So hopefully after this appt we will have some answers & a direction or a plan on what will be happening with Savannah. I assume they will run their own hearing tests but I'm not sure! Will be sure to update once our appt is done!