please help MIA

I have decided after alot of research of the last year and a half that the longer Mia is on a feeding tube the less likely it is she will ever come off it. Kids get addicted to their tubes and never learn to eat. Mia used to eat and i want that for her again. I cant imagine what it would be like to never taste food or drink again, to only be hooked up to a pump putting liquid straight into your tummy. The place that has the success stories with this is in Graz, Austria- yes it is a long way and alot of money. I am creating a website and facebook for mia...to make people aware and hope fully some people out there might be able to help us. I dont like asking anyone for favours, especially when it comes to money...if you want something yuou save for it- thats how I was bought up and thats how I am raising my kids...however Mia cant work and neither can I while I look after her. SHe cant save and so we are swallowing our pride and asking the public for any help they can give. We will be fundraising throughout the year, facebook auction, community events, but if you can spare any money then please click on the chip in below, every little bit helps her. Perhaps you have other ideas eg. donation tins at work, giving $1 from every hair cut etc... when her website is up and running I will post the link on here...Im not very good with making web pages but Im getting there. Mias miracle is her facebook page...please have alook again it only got started today! like it, share it pass the word around! thank you

my letter to mia on her 1st bday

Mia,

As you approach your first birthday, I sit back and think about how far

we have come. I can't believe that 12 months ago I was considering

what I would ay at your funeral- now I am planning your first birthday

celebration- you really are an amazing, strong and determined little girl

Miss Mia. I have been so scared many times throughout the year at the

thought of losing you, I think back to what we all went through form

Jan- June 2008- wow what a journey!

I do not know what the future holds for you- I do know we are doing all

we can for you now to make sure you have that best chance at that

future. You have proven to all involved in your care that you can do

anything. With that attitude my darling girl, your future should be

bright.

You have taught me so much in this year. My outlook on life has

changed. I believe you were given to us for a reason, you have many

things to do in this life time and nothing is going to hold you back.

Whether you end up in a wheelchair or not this will not stop you. You

make sure you do what you want to with your life and your dad and I

will be supportive of you every step of the way. There will be some

tough obstacles to overcome, and some people might be cruel, but just

know you deserve to be here and are strong enough to overcome

anything that stands in your way. You have proved from day 1 that you

are a fighter. Believe in yourself and you will achieve.

I needed to write this book for a few reasons Mia, the main one being that

when we received the diagnosis of your condition and we started to

research there was nothing out there that I could find from an Australian

parent's point of view. I didn't just want to read how things were done in

America or about all the medical jargon and doctors opinions- I wanted to

know how it felt, what I was going to be going through. I know each case

is different but I just wanted an idea from someone who had been

through it here.

I also wanted to get through to parents who may be going through this

that the medical profession do not always have it right. They do not

always know the exact outcome. I understand they need to give the worst

case scenario and go by what cases they have seen but if we had listened

that day then you wouldn't be here today. As a parent you have to trust

your heart, go with your feelings no matter how hard it gets at times.

Finally Mia, I wanted you to have the story of your first 18 months

documented - sure I have kept a journal but this is a dedication to you.

Again, we don't know what the future will hold - no body does. But we

have a beautiful new baby daughter and the very thought of her is

enough for us.

Your father, sisters and I are so proud of you and love you so much.

Keep fighting little possum!

Mum

Xxx

future

We have made a few plans for our future, but they can change. One

never knows where we will need to be for Mia.

I have looked in to the Spina Bifida associations around Australia and

think the the Brisbane one will suit her. I want her to be involved in

camps later in life and have contact with others who have this

condition. Living in the Northern Territory is what we would like.

I would like Mia involved in sports, so will need to be somewhere

where she can have access to this.

We know in the future that we will need a new car- or van to fit our

mob in and possibly a wheelchair. Maybe we will need to put a lift in

our house so Mia can access both levels. We are very conscious that

Mia doesn't get left out of things but at the same time we don't want

the other girls to feel left out etiher.

on the move again

We decided that we would put in for jobs at Hermannsburg.

me canoeing in the beautiful gorge

This is only an  our and a quarter drive from Alice Springs. In the December of

that same year we moved out to our new house next to the local school.

Hermannsburg or Ntaria as the local indigenous call it is a

remote community. This is what we came to the Territory for we

would now be living with the indigenous people in their

community and helping the students all we could. We had an

issue about what would happen to Mia, luckily we found a lovely

lady who was prepared to look after her whilst we were at work.

the wonderful Hosking family- my kids second family!!!

After a while we decided to try Mia in the local child care, so she

got to mix with other children and it was also our way of

supporting the community. The child care is located in the

Women's Centre and the local ladies spoil her. As soon as I walk

in they say "Mia, Mia's here" and someone takes her off me for

a cuddle. They are so beautiful and gentle with her; it really

puts my mind at rest. They are getting more equipment out

there for her and will get help from Mia's team in Alice.

The children in the community are also really good with her. When

they see her they like to pull her cheeks and give her a kiss. I once

asked a child why they did that so much to which he replied it is a

kiss of good luck. Many of them say she is their sister, or they are her

uncle. They are such sweet kids. At times Mia had to come into our

classroom and once when she was upset one of our boys who was in

grade 8 stopped his work and went to her pram, picked her up and

walked around the room patting her back settling her. I was amazed

by this automatic reaction from him whilst I was helping another

student. They all know Mia's condition and ask if she will be in a

wheelchair. We can only reply that we don't know. But to them they

mia when she used to eat!

don't care if she is or not.

mia playing with her choccie custard...mmmmm

music for mia

Mick rung Josh whilst we were still in Adelaide to find out when

he would be back in Tennant Creek. He informed Josh about

the 'Music for Mia' that had been organised. Josh was in the

city at the time and told me he found himself going all rubbery

in the middle of Rundle Mall. When he returned to Tennant

Creek he began to realise that what Mick and colleagues from

school had organised was a rather grand affair.

Josh was kept in the dark about a lot of the evening, but what

he saw when he and the girls attended was amazing. The

Music for Mia event was a community effort with numerous

businesses making very generous donations of goods for a

raffle and a major auction. Along with this there were

numerous musical items for the night, from the school,

community and some artists dropping in on their way through

town.Mia was given her very own boomerang, which is a very

special gesture to make.

I had Josh film the night so that Mia and I could watch it. I

couldn't believe what amazing people we had become friends

with in such a short time. They were so caring and knowing we

would need a lot of help in the future organised this for us. We

had nothing at home in the way of nursery items as we weren't

sure what was going to be the outcome of her birth.

The students at the high school expressed their kind sentiments in the

schoolyard and classrooms, they made donations to Josh and Mick, they

also made a dolls house to auction off throughout the night. The childcare

centre made t-shirts for Josh with "Music for my baby" written on it, the

girls had "Music for my sister" on theirs and Mia had a grow suit with

"Music for me" on it!

I of course messaged Mick to show my appreciation and keep him and

Mon updated on Mia's progress. I had to request a song since I couldn't

be there! Let's say I am an Abba fan and was always asking Mick to play

Abba in his gigs- this time I thought it appropriate to have Mamma Mia

sung. Even though not a fan himself he learnt the song. Josh rang me

that night when Mick was about to start playing so Mia and I could hear it

liveI sat next to her cot holding the phone for us both to hear, I of course

was overcome with emotion.

We thank Mick in particular for coordinating this event. Working

alongside Mick were numerous staff from the high school and we thank

them. Beyond the school, people also. The entire community knew about

Mia and the ordeal at birth and what a fighter she was they did so much

to support my family. Whilst in Tennant we received skin names from the

Warramungu people, and as a Tennant Creek baby, I feel she is a real

daughter of the town.

When Josh and I moved to Tennant Creek from Tasmania,

we read and heard that it had a heart of gold - a reference

to its mining heritage and now a metaphor for the

townspeople themselves having hearts of gold. We sensed

that from the very beginning and now we have seen it with

our own eyes and treasure it deeply - even more than one

would treasure gold.

back to territory life

8 weeks after Mia's birth we eventually left Adelaide for Alice Springs.

We were put into isolation to make sure we didn't bring any bugs with

us from Adelaide. Here we met the Paediatrician who would be taking

bath tine in hotel in ALice

over Mia's care. He was excellent and was always willing to listen to my

concerns, silly questions etc. He also gave Mia the chance to prove

herself and never told us what we should be doing. Of course he

advised us but then let us decide and try other ways first.

He ended up leaving Alice to take up a job in Melbourne, for us that is

a great loss, but a gain for the families in Melbourne.




sleeping in hotel with sister JOrdan!

We returned to Tennant Creek to show Mia off and to pack up the house.

Josh had his transfer to Alice and I decided to take 6 months off and

concentrate on Mia. I was linked in with the local health clinic and the

children's services team there. We started seeing the physio, occupational

therapist and speech therapist regularly each fortnight, and continue to

do so to this day. I have seen Mia get stronger with her legs and her

neck. Still we don't' know what she will do in the future whether she will

walk or not- but now that doesn't matter. It's funny that the first question

people ask when they find out Mia has Spina Bifida is "will she walk?"

People place such importance on that. I know it certainly helps in life but

there are many people who have lost that ability and have gone on to be

successful and enjoy life . When people ask me this question I am

tempted to say "who cares? If she does, good, if she doesn't it won't stop

her doing whatever she wants to in her life". That is how we are bringing

her up. She will try and do all the things we do. Her first camping trip was

when she was just 3 months old and hooked up to oxygen. I'd love to see

her conquer all the things people say she can't, shouldn't or wouldn't be

able to do.

our special friends Mon and Mel with baby Cooper

staffroom at tennant creek high for morning tea

our last dinner with dear friends before leaving tennat for good

Mick and MIa

I found a support group for Special Needs kids in Alice and decided to go

along. This was one of the best things I did. It was so good to meet other

mums and kids going through similar, if not worse situations than me. We

all had sad stories to tell, and yet all of us were so happy with our

precious little ones, no one felt sorry for themselves. I feel sorry for Mia at

times when I think about the future at school. Being a high school

teacher I know how mean kids can be. I hope she can find a way to

overcome this if it happens to her. At this group each week we got to

talk, the kids played and there were guest speakers, we did baby yoga

and there was also an Occupational Therapist there to work with the kids.

I really miss that group now I am back at work. I will never forget one

trip we went on as a group to visit the local special needs school- Acacia

Hill. This school and the staff are amazing. But what really got to me that

day and has stuck with me ever since is that for all the problems these

kids have they are always so happy. They have every right to mope and

feel sorry for themselves and complain about life, but they don't. I get

annoyed now when my students are too lazy to put pencil shavings in the

bin as their legs are tired, I try to make them realise that at least their

legs work. Mia has made me see things from a completely different point

of view now.

JOrdan and MIa at the special needs playgroup

We met some great nurses and doctors in Alice, Mia ended up in

hospital 2 times for respiratory illnesses and once for feeding

observation. Again, there are the nurses who really take an interest in

Mia who I feel most comfortable with. I don't understand why some

nurses work in Paeds when they can't seem to even say hello to the

children. It takes a special person to work on a kids ward and we met 3

who really stand out in my mind -I will always remember Crazy Mary,

Jayne and Claire, nurses who actually took the time to get to know Mia

and myself and made her feel loved, wanted and normal. If we saw

them out in the street they would always stop and talk to her, ask how

she is. That's the caring attitude a parent needs around their special

child.

Mia also had special team who worked with her every second Friday in

Alice. They were her physio Raf, OT Jane and Speech Pathologist Megan.

All these people have again made me feel like everything is okay and

they are so positive and loving towards Mia. Mia has worked with Raf

since we moved to Alice and its funny to watch them together- I am

sure Mia knows its time to work when she goes to physio and sees Raf,

she all of a sudden decides it is time to rest! She could be chatting in

the car driving in, but as soon as we go into that therapy room and lie

down on the mat, she thinks its sleep time, and lets us know when she

thinks she has enough of her workout as she lets out her big deep

sigh!

I'm hoping Mia will be with this team for a long time yet and they see

exactly what she can do in the future. Staff turnover here in the Alice is

high, so who really knows. But I owe alot to this team and thank them

immensley for their hard work with Mia and for teaching me what daily

exercises she needs to develop to the fullest.

dad and Mia

mia in her bumbo playing

elsa, jordan, mia and ella



loves her bath time

happy baby



special needs playgroups christmas party in Alice Springs

2 steps forward , 1 back

Mia had been attached to oxygen all her time in hospital so I could

never really go far with her. It was nice when all her bandages and

dressings came off. This happened all on one day. The Doctors came

in and said off with the dressings and out with the canula in her head

and also the NGT.

This was great as I could finally give her a proper

bath and it was promising for her feeds. We only had 2 tubes left to

get off her, and then I could see what my little girl really looked like!!

I remember many days where her oxygen would be turned off one day

and then when I came out to her the next morning it would be back

on. I felt very disappointed each time this happened. This also

happened with her NGT. Mia's heart rate used drop at times when she

would feed via the bottle or the tube which was very scary, due to this

the oxygen and continuous feeds were always hooked back.

I knew she could beat this problem as she had overcome so much

already. Every challenge the Doctors put to her she proved them

wrong. Many times they doubted her ability to do things and so

ordered tests, scans etc but each time the tests came back showing

she could do it. This happened with her swallowing and breathing

which we were told she would never do, even when she was

swallowing it was doubted that she REALLY was!!

Coming off the oxygen was hard for Mia. It seemed she was addicted

to it. We weaned her off it but she wouldn't give up that last 0.05! In

other words just a whiff, hardly anything. She ended up having the

Respiratory team come to look at her and they said that as Mia was

born 5 weeks early her lungs were very small, normally developed just

tiny. We had to be very careful of any respiratory illnesses as babies

with small lungs pick up 'bugs' easier than babies with normal sized

lungs. This was another reason we had to be near a major hospital. He

said they would grow fine in the future. To find out what was going on

with Mia's love of 0.05 oxygen, he booked her in to have a sleep study

done. They attached probes all over Mia's body and head and

observed her overnight. This tested how much oxygen and CO she

needed. When the results came back it showed that Mia had episodes

of apnoea throughout the night. Due to studies into the amount of

oxygen a baby needs during the first year of life to help intelligence, it

was decided that for 6 months Mia would be on .25 oxygen, day and

night. We had a small 7kg oxygen bottle for travelling and at night she

was hooked up to a machine.

Mia had issues with feeding from birth. She was a petite feeder

and as I write this now we are in hospital trying to get her to feed

on solids. Throughout her short life so far we have tried about 5

different formulas, adding calories, adding thickener, etc. She used

to have very bad reflux, which she has now got under control.

There has been alot of talk for months about putting a PEG

(feeding tube) in her tummy. After a lot of research and talking to

mums of kids who have one, my husband and I don't want this for

Mia. She looks healthy and is very happy- which is the main thing

to us. There is no point following the 'normal' growth and

development chart as obviously kids with Spina Bifida, Arnold Chiari

11 grow differently.

As every other challenge put in front of her- she will overcome not

liking solids.

We have been seeing a Speech Pathologist and have now started

to play games with her food. I get her sisters to help here as I

have issues with mess, and getting my hands covered with jelly

and custard etc. However, I must say that even after just a week

Mia is more interested in her food.

I am also taking her to Adelaide in a week to dicuss the PEG with

the Gastroenterology team. I am still determined she is not having

it! Whilst there we will catch up with her other specialists and have

a CT and ultrasound done.