Tuesday, August 31, 2010
Ellie had another hearing test today. These hearing tests with Ellie are proving quite difficult to do and the results for me are as clear as mud.
Let me explain....
There are 2 main tests that that they do on children. The first one is are where sounds come out of a speaker and if Ellie hears this and looks towards the window, she will get rewarded with a puppet. The second one is where the audiologist stands behind Ellie and uses different noise makers to see if Ellie turns or responds.
There are many problems with these 2 tests and Ellie...
1. Ellie does not sit still, so trying to determine if she has turned her head to the noise is quite hard
2. Ellie does not understand the concept of the puppet reward, so does not know what she needs to do
3. Ellie can sometimes remain quite blank in the face, so its hard to understand if she is responding to noise.
Today we had another hearing test, however for this one the audiologist decided to test Ellie whilst she was lying down. Unconventional, I know. But this is where Ellie was the 'stillest' and we could get a better result. She responded ever so slightly to 2 noises, by 'stilling' and eyes widening.
This is the most results we have ever had from a hearing test, however the results are still clear as mud to me. I still really have no idea how much Ellie is hearing, or worse still, is not hearing
Next week we are going to the Royal Childrens Hospital for a different type of hearing test called a 'stimlab' test. The difference with this test is that instead of boring, monotone sounds. They use more exciting sounds such as birds, dogs, bells, phone ringing, car etc. The hope with this test is that these noises gain Ellies attention better, and she can give us a clearer picture of what she can hear.
One bad thing that came out of todays appointment is that the audiologist thinks that both of Ellies grommits have come out. I really dont know how as we are so careful with not getting water in Ellies ears. I have made an appointment at 8am this Thursday morning with Ellies ENT, for him to check if the grommits have come out or not.
At this stage we are going to keep persisiting with regular hearing tests to see if Ellie can paint a clearer picture for us. I still want to get a MRI or Catscan done of Ellies ears to check if the bones have formed properly, as there is also a possibility that they may not have. Just like her eye never formed, and she also had a cleft lip/palate
Fingers crossed those grommits are still in those tiny ears of hers!!!
Posted by Melissa Young at 12:41 PM
Monday, August 23, 2010
Ellie opening her presents
Enjoying the wrapping paper more..!
The birthday cake
The Birthday girl in her 'party outfit'
In the party mood!!
Cuddles with 'pop' Rob
Giggles with Dad
Smiles with Mum
Cuddles with Uncle Dan
The party 'crew'
Enjoying the Happy Birthday 'tune'
Cutting the cake
Posted by Melissa Young at 8:25 PM
Sunday, August 22, 2010
Today, 22 August at 12:50pm Elllie turned 2. Part of me thinks 'where on earth has that time gone' and the other part of me feels like Ellie has been here forever and that 2 years took ages to reach.
For me Ellies birthdays are a real celebration, to celebrate where she has come from and what she has acheived. She has acheived so much in her short life... she has been through 7 operations, she has suffered horrific seizures that are now becoming slowly under control, She has become so much stronger, she now curiously plays with toys, she eats so much better, she recognises familiar faces in her life, and challenges new people in her life with a stern stare.
However there is a small part of me that is tinged with something; wether it be sadness, curiousity as to what life could have been like, or hope... Hope that life may get easier one day for Ellie.
Dont get me wrong Ellie is the absolute light of my life. Ellie can make me smile by doing nothing. Make me laugh constantly, just by her cute smirk or her cheekiness that is slowly coming out in her personality..... But... Ellies birthdays also make me think about what life would have been like without WHS in our life.
All that aside, today was a celebration. We had a beautiful lunch with close family. Thank you Ellie for all that you have taught us, We love you, and have made me me find a different side to me that I never knew. Thank you!!!
P.s - Photos of Ellies birthday to follow
Posted by Melissa Young at 5:09 PM
Saturday, August 14, 2010
What amazes me by having a child with a disability, is the way in which you have to stand up for, advocate for and push for what your child not only requires but deserves.
Most of you may know that I have been out to the Cerebal Palsy Education Centre (CPEC) to check out the programs that they run, which is called conductive education. I was thoroughly impressed with their services and thought Ellie would benefit greatly from attending their program. However up until earlier this week the Department of Education and Early Childhood Intervention (DEEC(would not put Ellies name on the waiting list for CPEC's programs because of where we live.
Throughout end of last week and early this week, I spoke with the DEEC many times and explained in a very firm but nice manner that I would not let up until Ellies name was on that waiting list. I said I would go to a current affairs program to make them aware of what they were doing and I also contacted my local state member for parliment.
Yesterday I received a phone call from a manager at the DEEC to advise that they have now changed their rules and processes and will now accept all children to be on the waiting list for CPEC, and not just kids from a particular region of Melbourne...
WOO HOO... I was so happy!!!
This has made me realise that Luke and I are Ellies voice, we are the ones that need to stand up for what she requires and deserves and if this means that the government needs to be challenged and their processes needs to be reveiwed along the way.... so be it.!!!
Posted by Melissa Young at 8:27 PM
Thursday, August 12, 2010
Ellie had a EEG a few weeks ago. This week we had an appointment with her neurologist, Michael. It had been 3 months since we had seen him.
So we gave him a bit of a update... that Ellie had only had 3 or 4 small noticeable seizures in the last 3 months... Which is GREAT!!!
However there has been many occasions, (at least every 2-3 days) where she does 'things'. The reason we call them things is, I dont really know how to describe them. She might twitch her nose, lips, or eyes. She might drool and stare at something. She might wake up looking like she has been hit by a bus and not slept etc etc... However when these things happen, it is short, it doesnt go for long, and she is aware the whole time. So she isnt vagueing out, which makes us really unsure if it is seizure activity or not.
He told us that her EEG still came up with some activity and abnormalities...
So... The plan is to increase Ellies dose of kepra, as this is the one that seems to have really brought Ellies seizures under more control and still keep her on Trilpetil. If in 2 weeks time we are still noticing these strange 'things' then we can increase her Kepra again.
All this aside we are very happy with where Ellie is at the moment with her seizures, considering how bad they were at the end of last year & early this year... Very happy with Ellies neurologist!
Posted by Melissa Young at 7:44 PM
Tuesday, August 3, 2010
Ellie got her new glass eye last week that they made from a mould they took of her socket.
If you compare it to the first one she had there is definately a noticeable size difference, especially at the back of her socket.
I cant beleive we have gone from 'NO ROOM' at all in her eye socket, then by using a eye socket expander and getting her first glass eye in, she now is onto her second glass eye.
Take a look at the pictures to see the difference yourself.
ELLIES FIRST GLASS EYE - DECEMBER 2009
ELLIES SECOND GLASS EYE - JULY 2010
Posted by Melissa Young at 2:32 PM