I am also going to add some photos of Danika having a week in the RCH http://www.rch.org.au/rch/home.cfm  having video EEG. Danika has seizures due to the masses in her brain, so the consultant was testing to see if they could safely remove her entire right frontal lobe. Danika went into status epileptics on June 1st 2011 and she came within a cats whisker of not surviving, so these test are important to her future plan for wellness. 
She had to stay on the bed for 24/7 for 5 days ahhhhhh was not easy for a well child to sit that still but she did great, we played snap so many times I don't want to play another card game ever, and the lego was a big hit. 
Always smiling :)

Well tonight we are feeling a bit out of sorts, Danika is having a minor surgery in our world not so minor for other kids, She is having her PEG changed to the permanent one, she will just be there for the day. I have been talking to her about it for a few days now but I know it wont help in the morning. She has ASD and is extremely orally adverse so she is going to freak when they try to put the gas mask on her to knock her out......I hate the way I feel so useless and helpless when they put her to sleep as she is crying for me. I wish there was a different way to put her to sleep.

the current PEG

It will be really good for her when its done no more worrying about someone touching her tube or her getting it caught on the play equipment.

one of the other 50 children born with a tessier cleft, this is beautiful

http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html

Craniofacial Team Visit Friday 16th June 2012

Off to Melbourne we go again, Danika just loves it and is very good at flying, but all things being equal this trip didn't start out so well. We are just making our way through security at the Airport and Danika panics for some reason (not all ways clear to the rest of us) and runs straight through security screening, well it didn't go down well I run after her, two security guards grab and yell at her and there is me close behind shouting louder than them, "don't touch her she has autism". I get her and we go back through the scan Darren takes her to sit down to watch the planes while mum (me) gives the security guards a strong talking to..............need I say more! 

Melbourne was good nice to see the wonderful team and they just love her to bits . We all talk surgery for two and a half hours,  I am exhausted my brain feels heavy with information I have to take in. The first thing Darren and I find strange is seeing a exact copy of Danika's skull, its the strangest feeling, hard to explain what it feels like to hold your daughters skull in our hands. Danika has been having 4D imagining since birth so they have been able to make this 4D plastic copy.

This is her Skull and Danika sticking her finger in her own mouth! 

The operation is not going to be easy. There will be 11 surgeons from five specialties in the room and they think it will be at least 18hrs all things going to plan that is. If she has a seizure on the table they will try to stabilize her but may have to stop and take her to ICU and start again in a day or two. They are all very confident in her doing really well after the op and have told us she will not look good for several days as the bruising and swelling settle. This is my baby's face.............not an arm or a leg or even an ear thats need reconstruction but her FACE the so called window to her soul, I can not form words, not even in my own mind to be able to tell you how it feels to know she will look different from the beautiful girl I love. The face I stare at, have kissed a million times, the face that smiles, shouts and kisses me back!!!  I'm going to leave that thought there and move on....

Here are some photos of the team of wonderful people that are the Craniofacial Team at the Royal Melbourne Children's Hospital. 

Professor Anthony Holmes

Danika socializing with the co-coordinator Pru and a specialist IT tech

Me holding Danika's skull

Mr Andrew Greensmith checking Danika out

Danika happily writing her name on their paper work

Andrew this is not a look of a confident man!

Danika socializing still

her images on the screen

Her skull

Planning

look at you cutie pie

our beautiful Danika years ago

ohhhh cute chubby bubby

Our story

Darren and I would like to share with you the amazing journey that is Danika's life, how she has defied doctors from the very second she was born and the amazing job she is doing each day. This is a record for us to look and reflect on no matter where we are in the world. So cry with us, laugh with us but most of all be proud of Danika like we are!!!

 

Our very first photo of me holding Danika

It was June 30th 2006 we got a phone call from child protection (CP) asking us if we would take a new born baby girl, but she was going to go onto a 18yr order so we need to be sure we can commit to that......wow big ask! I asked how old? the reply was she is just 30mins old and will be removed in another 30mins but she needs to go to the NICU as she is fighting for her life........OMG why I ask, she has been born with no nose I am told. What does that mean? the reply was we don't know we haven't seen her! As you can imagine I have no idea what to think at this stage but there is more..........She has also been born with the highest level of drug addiction recored at the Royal Hobart hospital so shes is needing a drug withdraw program.
So much information but not enough either so I ask if I can see her? Child protection not happy at that request but to bad I go see her and its the hardest thing I have ever done..........she does have a nose its just not a normal one (we find out later why and what caused it) anyway I am standing there looking at this tiny little pink skinned baby with a very different face and all covered in medical tubes iv lines, wires and machines everywhere............OH MY GOD I love her already. we say yes and the rest of this page will show and tell you of the last 6 years.

Come on the journey that is Our Danika

Getting the hang of it. I think

ok so ive got started Ill be back............good night see you again soon :)

photos of Danika

Hi there chubby cheeks

snuggles with big sister Claire

sleeeeeeeeepy

awake

oh no whats with the hat?

I can do it myself!

ta

not smiling for the camera

boo

it was this big!!

chocolate cake

wasnt me!

me and daddy

move over Ted its me they want in the photo

ohhh so tiny and sooo cute

my big brother Hayden