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.