Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Wednesday, March 21, 2012

Another eye surgery.

Ellie is booked in for another eye surgery tomorrow.

She will be having a Hyrdrophilic Orbital Expander put into her right eye socket. These expander's are placed in the socket in their dry, contracted states and expand to their full size (which is generally a 10 fold increase in volume) when it absorbs the surrounding tissue fluid. The expander will be in for 4 weeks.

The idea of this expander is for it to stretch out the front part of Ellie's eye socket and also try and create more eye lid, which in turn will mean that we can fit a larger prosthetic eye in.

Ellie has had this procedure before and it was very effective. However in the 3rd week of having the expander in, her eye socket got infected quite badly, which caused her to have an increase in seizures, and she was hospitalized for the last week and put on IV antibiotics.

I am going to chat to Ellie's surgeon tomorrow morning, and ask his thoughts about putting Ellie on antibiotics for the duration of having the expander in, basically to act as a preventative against another eye infection.

It will be an early start tomorrow morning, we have to be in the city at 7:15

Early night for me tonight...!!

Thursday, March 15, 2012

She continues to amaze us...

Clever Girl
Lately Ellie has been understanding so much more of what we say and do... For example when we get her breakfast, lunch or dinner ready, in the microwave, she knows that it is her food and sits very excitedly in the kitchen.. we will then call her over to her seat and table and she scoots on over..

Ellie has also been able to clap for some time, which is an achievement that we were very happy with, but now Ellie has started to do it on command, as she does with wave hands and kick legs...

This just shows that she is definitely understanding what we say to her... Clever little girl

Check out the video below.

Neuro Update
A few weeks ago, Ellie had a routine hip x-ray. The hip x-ray results came back fine. But they also managed to get the bottom part of her spine in the x-ray and this showed up some abnormalities. Ellie's neurologist, like Luke and I have always assumed that Ellie's not walking yet was due to her having WHS, low muscle tone, delayed development etc...However thought it would be a good idea to look into the abnormalities further. He organised an MRI to get a better look at her spine, and also referred us onto a neurosurgeon to discuss the results.

We met with the neuro surgeon today. Basically my understanding is that Ellie's spinal cord is a little bit longer than it should be and it is also slightly tight... Could this be a factor behind why Ellie is not walking yet?? Could surgery to loosen up her spinal cord assist??? Or is Ellie not walking yet, due to the bigger picture of WHS and its symptoms??

Who knows?? As the neurosurgeon said.. if we had a crystal ball...!!!!

He explained that the issue with Ellie's spine is quite mild. He isn't even sure that if we did do surgery to loosen up her spine that it would be a factor in her walking... Due to this and also not wanting to overload Ellie with surgery's (considering she has 2 eye surgery's in the next 5 weeks) we have decided to take the conservative approach.

The neurosurgeon is going to review Ellie in 6 months, to see where she is at... A real positive is that Ellie wants to stand, Ellie wants to walk, and with assistance really gives it a try... The only reason we Will try the surgery to see if it helps is if in 6 months time, Ellie has regressed or she hasn't improved at all..

But looking back on Ellie's progress in many areas of her development over the last 6-8 months, I am not too concerned... This little girl just keeps on making gains..!!

video