just 2 sleeps

OK we are all packed and awaiting the taxi.
It seems I am still in the eye of the storm...........I am still numb able to talk matter a fact about Friday no tears no stress, but I have no idea how long this will last! so if you are that security guard at the airport that tackled my tiny 6 yr old when in an ASD meltdown moment ran through your security, make sure you think today I could crack at any moment, consider your self warned. Mummy tiger is not ever far!!

So I cant blog from my ipad gerrr so this maybe the last blog until we have made it out the other side.
I did not intent to update her journey, preferring to spend all my energy on my baby, but I will however catch you up after.

thank you for reading and pls pray, cross fingers whatever works for you on Friday the 5th of October.............the day Danika rocks her surgery.

love Lea

OMG 5 sleeps to go

We have been to the RCH again this time to see the Ocular surgeon and his team, had bloods done for the transfusion, photos for the surgeons and then the pharmacy for pre opp antibiotics to try to dry up as much mucus as possible (snot in the brain is bad) quote from the brain surgeon.

Got home to a freezer full of lovingly cooked food and a goodie basket, I have some of the worlds most amazing woman as my friends and these special mums all have children with different abilities as well but they found time in their world to think of us.................  Kylie, Sallyanne,Kylee and Erin my MOFO (Mothers Of Faboulas Offspring) family

Our days have been flying past in a daze or a state of  heightened awareness.
We spent hours with Steve Lovegrove our heartfelt photographer, Danika was great she loved it, such the little poser. Mixed emotions about it but it was fabulous there are some super special people in this world and thank you doesn't cut it, but I am thankful very thankful

Danika went to school on Friday, Darren picked her up and he wasn't expecting to have crying teachers asking him questions. We aren't sure yet if we will send her to school Monday and Tuesday as there were many kids missing from class and we don't want her getting anything.

Packing for us is a pain in the bum and while doing a load of washing I found the Do Rag she was sent from the USA from Cranio Care Bears and I had a moment then as I put it aside to pack, Ive brought a few shirts that do up at the front and her PJS all do up at the front so that's good.

We have had family visit and call and it seems strange to me to hear them talking about the operation almost like its not real, not sure why I feel like that and I'm not going to worry about it either.

Ive been busy downloading all Danika's music and her favourite TV show Pepper Pig. thinking off all the special things she may want to have with her in hospital, she has a small blue soft toy dinosaur that Claire brought her and a few other special toys that will be packed.

A special card came in the post this week





 

11 days

Photo meet and greet at 3pm today, cant wait I hope Danika is going to let Steve take photos of her, I don't care if he gets grumpy, angry mad Danika I want to catch it all.

School, met with the Special education support teacher today as its a student free day today. She tried hard not to cry but didn't do to good a job. But that's fine they all care so much about our little beauty.

getting our flights sorted for tomorrow to see the Ocular surgeon. Kids going in different directions and my parents planing leave from work and a trip from WA to Melbourne for the 4th.

My head is swimming with things to do and I'm happy with that its the quite time I don't like, thoughts rush in no matter were I am and the tears start its not a good look in the deli section of the supermarket and all because I ordered Danika's favourite thing ever, Bacon, so then it came to me when will she be able to eat solids so the tears started. Will she want to eat and not be able to or will she not want to move her face at all?

Its strange the things that come to mind

 

13 days to go

Im thinking it may help me to write a little each day as we count down the next 13 days. Not so sure that deciding to wait until we had a date to start worrying was the best idea..............

I have always known this day was coming and its been there just under the surface, some times more than others, like when some twit feels the need to point out my child looks different, or a kid  says something mean to her. The hardest part of that has been the blatant long stares from people every time we go out.

So now we move into the next stage of her life. Reconstruction...........

Yesterday I cried and cried, "cry me a river" springs to mind was it Justin Timberlake that sang that in a song?
Today they are there but just holding off which is good I don't look good frog eyed, red blotches and a runny nose, but a least I looked like I felt.

Now its time to get real and get on with it, I have to shop for PJ's and t shirts for Danika that do up at the front she can't have anything go over her head for post op. This is not a shopping trip I will call retail therapy.

My dad and step mum (I'll only refer to her that way this once as she is more of a mum than the one I have) are coming to Melbourne on the 4th and I can't thank them enough for flying from Perth Western Australia to be with us. Darren Claire Danika and I are so welcome of their support.

Claire(big sister) had already booked the week off work as we were going to the Gold Coast on the 3rd until the 9th of October for Danika's Starlight Wish she wants to swim with the dolphins. I tried to convince her she wanted to meet Robbie Williams without luck and the starlight team were onto me as I'm not the first mum to suggest this lol it was worth a try I say............ So you dolphins wait for my precious girl to be healed and strong then watch out she is coming to get you............







 

http://www.heartfelt.org.au/

Going to meet with an photographer from Heartfelt on Monday.
Thank you Steve Lovegrove.
I am looking forward to him catching some amazing shots of my beautiful girl, I want to see photos of her happy, sad and angry all of the feelings possible. I don't want to ever forget the way her face moves when she feels these things. The love she shows in her whole face smiling , the way her eyebrows raise just a bit when she is mad. It really is a gift Steve is giving us its HUGE
I just hope I stop crying before then as I can hardly see my eyes are so swollen.

A very big few days.

 Met with the brain surgeon Ms Allison Wray and she explained what her role will be during the operation but as she stated it will still be a wait and see approach as they have yet to operate on a case like Danika's. She told us the parts of the skull she will remove and I must say a huge thank you to my friend Erin for giving me the courage to ask that they don't shave Danika's head, they won't they will just remove the strip that they need to.

 She explained she will put a drain down Danika's spine for a drainage to help stop swelling. And that she will do her best to keep the Dura intact but with Danika's deformity it may well be that the dura is fuzed to the skull, This will not be good and will make her odds lower.
So the bomb drop was Darren my hubby asked if there was talk of a date for the surgery and Allison said yeah it's still the 5th and we both said the 5th of what? October she replied. I needed to sit down and I asked if she had a sick bag and I can tell you I was only half joking!
To say we are surprised is understating it a LOT.
That's just 14 days away........
I have been asked many times over the years it has taken to plan this surgery "are you worried about Danika's operation" and I have always had the same answer "I'll start to worry when I get a date" shit I have a date.........
That's all I can manage for now :)

Hi all,
I haven't fallen of the face of the earth, just been busy and Danika, I am super pleased to say has been really well.
I on the other hand, have been trying really hard not to think to far ahead in regard to her surgery, but Ive been struggling with that!!!!
I watch TV with Darren after all the kids are in bed and I'm so tired so off to bed I go and then I close my eyes and all this stuff washes over me.............

We are off to RCH Melbourne on Wednesday next week to meet with Ms Alison Wray Neurosurgeon extraordinaire (she was the one to separate the conjoined twins a few years ago) to discuss how she is going to protect Danika's brain during the operation and to stop any life threatening infection. we have been told if she gets an infection its about  96% chance of mortality, so clearly her job is VITAL
I feel all strange about meeting with her, it means we are getting closer and I'm not yet ready for that.

The following week we return to RCH Melbourne to meet the eye surgeon who's job it is to protect her eye site during the operation. Again if you have missed a blog there will be 11 surgeons from 8 specialities in the room all doing their part. Ive asked myself does this make me nervous or more comfortable that there will be so many in the room? I swing from feeling good and bad about it, it really just depends so clearly I am yet to decide.

Our very special paediatrician Dr Michelle Williams from Hobart has offered to attend the surgery, she will pop in and out and keep us updated, and I know she is super excited to witness such a rare surgery. She has been with us the whole time through all the ups and the many downs, we have her mobile number and we chat if and when needed she really is a bright light in amongst this hard journey.

Danika has had a great few weeks at school. They have had cross country and she ran yes I said ran the whole way and she wasn't even the last to cross the line. And then they had book week dress up and she went as Woody.