Therapies4kids Florida USA

I had always thought there had to be something more out there in the world for kids with disabilities and I wanted to find something to help Mia walk,get stronger etc. I had always said from the start I would travel anywhere to get her treatment,surgery or therapy.

Through my googling I came across this therapy centre called therapies 4 kids. I looked into what they did, what their success rate was,found other people who had been and chatted with them and then decided I wanted Mia to go. The problem - it was on America , fort lauderdale in Florida! Well I had always wanted to go to Florida, thought this was my chance to see Disneyland! Was I wrong!
I emailed Eileen who along with her husband run the therapy centre to see if Mia was a suitable client and the cost involved plus when a vacancy was available. I heard back from Maria who I dealt with from now on, she was the vice president of the centre. (As they call it in America!) in Aussie terms -the manager.

After a few emails and some details about Mia I found myself booking Mia in and starting to arrange flight details. I had applied for a loan to get a new car to fit miss Mia's wheelchair in so I used that money to get her a month of therapy instead. It was well worth it.


The day came to leave Katherine on the bus to Darwin,a three hour trip then head to the airport to start the long trip to the USA! Everything went smoothly on the plane,Mia and I were in business class, there was no way I was going to travel that far crammed in cattle class with Mia on my lap.she instead laid back comfortably and listened to music and the kids shows on movie system. The flight to LA was great, however the shock came when we travelled LA to Fort Lauderdale! I could not believe the lack of safety on the plane! No child safety belt it didn't even matter of I didn't put mine on! Pretty much everything Aussie air hostesses do the Americans didn't! I was so glad when we touched down alive! Then I found the taxi rank and no one around new where Ronald McDonald house was in Fort Lauderdale...I felt like crying by this stage after the flights. We did manage to get there and settle in ready to start therapy the next day.


We arrived at Therapies 4kids and greeted by lovely friendly people. This felt right, Mia would be looked after I thought. After an assessment by HEAD THERAPIST LUANA....we were given our therapist....the beautiful SURLEY. Mia became attached to her over our four weeks and I must admit I did too! These therapists were the nicest and most caring people I had met for a long time they do an amazing job! SO did Maria! I can't forget her!

The therapy consisted of four hours physical therapy "The key element is a individualized strengthening program established for the child based on his or her individual needs, strengths and weaknesses. Increased strength will reflects in daily functional activities that usually follow, or are combined with the strengthening exercises."

Mia would be in a pediasuit for half that time. "Suit aligns the body as close to normal as possible. Reestablishing the correct postural alignment plays a crucial role in normalizing muscle tone, sensory and vestibular function.

The Ability Exercise Unit is used to train a child to gain the ability to isolate the desired movements and strengthen the muscle groups responsible for that movement. The Universal Exercise Unit allows one to gain range of motion , muscle and joint flexibility, as well as functional skills."

Quoted from www.Therapies4Kids.com

Mia also had an hour in the oxygen chamber and an hour of speech therapy. I wanted to do the oxygen therapy with her but i was just pregnant with Noah and couldn't, although seeing it I don't think I would have lasted...too claustrophobic for me!

Mia's speechy Clara, was another amazing woman who Mia also took too. Clara would have special
little sayings for Mia and music playing and Mia just smiled and laughed for her. ( which is still say now and Mia remembers and laughs!) There was something about these people that made you feel like both me and Mia were normal. That Mia didn't have a disability! They cared.

 Obviously Mia's therapists will always be heroes in my eyes, but every single person in that clinic no matter what their role cared for these families and went out of their way for them. It seemed that everyone in that facility-staff and kids and mums and dads were one big family. We were there for a common goal and everyone supported each other. For our last week there Surley had her mum with her. She too was a lovely woman who when I walked through the door with Mia had her arms out and ready to hold Mia - this is something you don't get too often here, unless you are family ....but then again even some of Mia's family won't do that with her!!

There were families from America Europe south America etc. this therapy centre should be a priority for anyone with a special needs child who needs help in these areas. Get your child there. Or better still help me bring it here to AUS!( something i am working on) I wish I could have stayed longer than a Month but I don't have an endless supply of money! Mia benefited greatly and came back starting to eat again, stronger physically and making more noises. When we arrived home again I continued with this therapy and bought equipment but then as my pregnancy progressed so did the vomiting and I could no longer do everything that was established in Florida! So yet again I have let my baby down!

Florida amazed me...I loved shopping as everything was so cheap it was unreal ! I hired a car which for the first few days was really interesting! Driving on the wrong side of the road, turning the corner on a red light, just some rules which were hard to get used to.

So as I mentioned earlier I thought I'd have time to drive up to Disneyland one weekend....yeah right! The furthest I drove was to Miami. That was a crazy drive on the freeways! Nice when we were there, shopping ,Mexican lunch on the water.
During our trip I started to feel American and everyone loved my aussie accent! It opened my eyes to the laziness Of some Americans...takeaway food is so cheap, everything is cheap really, but there is takeaway shops everywhere and neat all drive thru! I even saw a drive thru chemist and a drive thru bank! No I didn't use them, I was starting to understand the problem we hear on the TV about obesity in the USA.

Mia always complained when she had to work too much or too hard! She still is like this at school. Mia does things when she wants to and always has. That seems to be the attitude of a lot of people in the territory ! She did love the big exercise ball, always laughing and when she was a bit grumpy the staff worked out that you sing to her. Old Macs farm became a favourite of hers and the staff! Majority of the staff were from Brazil or near there and they had these beautiful accents and hearing them sing at times was very funny to Mia and me I must admit now! A male therapist Braz always sang E I E I O to Mia and that is all she needed to be laughing and then Surley would then laugh at Mia and then no therapy could happen till Mia settled down as she was often on hysterics!

Anyhow, Mia and I were loving our time in therapy. When the time came for us to leave - it was hard. I had to buy these people presents and to my surprise Surley and Clara had also bought miss Mia a present and also something for Noah! Special people I tell you! When it is your last day they throw you a party cake and all. Therapy stops for everyone and they all celebrate your 'graduation' from therapy. This was sad to me as it meant we were leaving these people. I was happy for Mia and what she had achieved but I cried as no one had done this much for Mia before and believed in her and supported her. (family aside) You are also given the programs for you to continue with at home and all the staff sign the front and leave a message. I couldn't read this till we were back at Ronnie Macs house as I knew I would cry more and I had done my fair share that day! The messages were beautiful and the card from Surley and Clara too. They call her princess. Said things they would miss about her and what she deserved in life....and I just cried. I still do when I read that card and the messages.
I often look at our photos from that time and wish we were there, I will never forget the friends made and all our experiences. I would love to have the money to bring this program to Australia as they expand all over the world.One day i hope!   Our children are missing out. That seems to be the norm for these Aussie special needs kids.

I learnt so much over there and they inspired me to continue in this somehow. I can't stop researching about programs that are out there somewhere for special needs kids.  I like to find out info for any parent here in little old Katherine to help them and their child. We are so isolated here and even the doctors don't know a lot of what is out there.
I could write for hours about this program and the therapists but if it is something anyone wants to know more about go and look on the web www.therapies4kids in Florida. Photos are on Mias Facebook page of her at therapy and her wonderful therapists.
As I said I wish we could go back and stay for longer but everything costs and when you can't work because you need to look after your special needs child it makes it tough! Very tough!
But i know that I can call on this team at anytime of I need advice or help with Mia and they would go out of their way to help. I feel we have been blessed to know these people and have made friends for life.

It really was an amazing time in an amazing place with amazing people doing an amazing job!

Mia's first year at school

So her first day...i didn't cry...i was a proud mum!




My baby had made it to pre-school! Doctors if you could see her now!

I took her into the school and had the traditional first day photos. All the other girls had the same treatment.

She settled in very well, went out to assembly and then as the kids all went inside I had to pull myself away...slowly....and leave her to do the school thing by herself.


As you can see I put her ipod in her bag, as that is what will cheer her up if she is ever upset! 


As a teacher myself we always say no ipods at school, yet here I was packing it in her bag!


Her principal is excellent! I feel comfortable leaving her knowing someone is in charge who cares about these kids. I have been reading the book "Mommy, I wish I could tell you what they did to me at school today" and I cry at the experience's the children in that book have gone through at school. I am disgusted and ashamed to be part of the teaching world when things like this are going on. I strongly recommend this book for anyone who works with or has special needs kids. Your kids cant tell you sometimes what has happened in their day like able bodied kids. We need to be aware.


Throughout her day Mia has been practising standing in her new frame! this is exciting and I cant wait to get it home! Mia loves standing.


Of course she does crafty activities, stretches, etc whatever happens there she is tired by midday when her 'taxi' brings her home.


When I was first offered the use of this taxi- i was horrified. NO way would I send my little girl ion a taxi with some man every day. I would drop her off and pick her up every day- so i thought! But there comes a time when I need to accept help, and the fact that Mia needs to get to know other people in the community, and her chair is so heavy to pack up and lift in to our boot. We dont  have a wheelchair accessible car!

Who would give their 3 yr old to a taxi driver each day? not me. Until I met this lovely man, wonderful, caring and loves these kids. He only does the 'taxi' run for this school. It is like their school bus. A van that picks children up every morning and drops them home again. He is more like a friend than a taxi driver! He works for these kids and then also at a disability home here as well. An amazing man really.I beleive Mia is enjoying her school now. She is getting used to the routine of up early and get dreeed ion her school unifrom! She looks so cute we are so proud of our precious girl.


 Another milestone she has achieved!

Arnold Chiari 11

Well after another few hours of waiting at the hospital Mia finally has another tube in! Yes she seemed to get the last one out of her nose again...I don't blame her! This time it took 3 different nurses, 2 goes each and it was in...then a little bit more radiation to check it was in her tummy not lungs and we were heading home!


This has got to stop! I hate seeing her go through this, she screams and fights so hard. She can Be a strong little girl when she wants to be!


We have to get this tube out and real food in!


So, with the time we had waiting at the hospital I got thinking- I really don't know that much about her Arnold Chiari Malformation 11 diagnosis. Yesterday I decided that would be my focus for my research. Well I ended in tears! This is the first thing I read:

The prognosis differs dependent on the type of malformation (i.e., type I, II, III, or IV).Approximately 33% of individuals with Chiari II malformation develop symptoms of brain stem damage within five years; a 1996 study found a mortality rate of 33% or more among symptomatic patients, with death frequently occurring due to respiratory failure. 15% of individuals with Chiari II malformation die within two years of birth. Among children under two who also have myelomeningocele, it is the leading cause of death.

DEATH!!!
OMG!!! Does this mean Mia? Is this how I am going to lose my little girl? When? before she is five? that's only 1 yr away....I just lost it.


I fed Mia her breakfast( well milk through the tube) this morning and i stared crying...thinking about what I had found out. This can't happen. I need to research more and find out what can be done.


I always look at my little girl and think what would happen and what would i do if I lost her. That beautiful smiling face, her laugh, her cuddles and snuggling in to me at night when we have our bedtime cuddles. I know this sounds morbid but these are my thoughts.


My life's mission is to find every possible therapy or surgery to give Mia the best chance she can have.


She is making sounds like she wants to talk or sing to her favourite Guy Sebastian song....I know she can do it again. IF WE CAN JUST GET THIS TUBE OUT!!!!!!






okay, let me take a step back as i often get carried away: so what is Arnold Chiari Malformation 11 would be what some of you would be asking...and alot of the nurses ask that too when I tell them what Mia's conditions are!

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.

Type II, also called classic CM, involves the extension of both cerebellar and brain stem tissue into the foramen magnum. Also, the cerebellar vermis (the nerve tissue that connects the two halves of the cerebellum) may be only partially complete or absent. Type II is usually accompanied by a myelomeningocele — a form of Spina Bifida. The one Mia has.


OKay so i have spoken to mums in the USA and a few of their kiddies have had surgery and have been alot better after. Why are we not informed of these things here? I get so frustrated when i find things out through the forums I am part of and then i end up informing medical staff of these options. Isn't this their job? isn't this what they are paid for?  I feel like a real pushy mother when i suggest things to them.


Then I find this out....

 

Individuals who have a CM often have Tethered cord syndrome occurs when the spinal cord attaches itself to the bony spine. This progressive disorder causes abnormal stretching of the spinal cord and can result in permanent damage to the muscles and nerves in the lower body and legs. Children who have a myelomeningocele have an increased risk of developing a tethered cord later in life.

I am so glad I spend my mornings researching.We are off to Adelaide at the end of April. Was meant tot be March but they are too fully booked. So I will take my list of questions about everything and see what they can do for My Mia.
Sometimes it feels like because we live where we do it doesn't matter about us! If we lived in a major city things might be different.

 

The day mia stopped breathing

Mia had been a little unwell, just not herself for a couple of days. Her eyes then started to look puffy, like she had an allergy to something. I had just got two kittens for the girls and thought that maybe mia was allergic to them. The kittens got put outside! Mia didnt improve. One day josh stayed home with Mia and i went to work. I received a phone call from him around recess time saying Mia was no better and was sleepy all the time. I went straigt home and took her up to the emergency dept at katherine hospital.

At triage i told them the symptoms and we were taken in immediately and a dr came straight over to us. I was sitting on the bed with mia resting on my legs, as i was holding her she stopped breathing. We there less than 15 minutes!

Nurses came fom everywhere, one of them got the scissors and cut her tshirt open, the doctor was calling for the other doctor to come. I remember the other dr yelling out from behind the curtain that she was doing something and be there soon. The doctor working on mia yelled out NOW!she has stopped breathing...then everything started to get crazy. I was crying, watching all these people do all these medical things to my daughter to save her life. I was just staring. A nurse then got me a chair,  another then bought me her baby pandora bracelet. This made me cry even more. This to me was a sign i had lost her, that she was gone. Giving jewelery is what happens at death. My parents wedding rings were given to me when they died, i assumed this is what just happened with Mia. I was a mess.

I rang josh and said he needed to get up to the hospital imediately that things werent good, i also rang my mother in law who is very close to Mia. They were both there within ten minutes.

By now the doctors who had happened to be down from darwin hospital were asking me questins about her condition,her neuro surgery team in adelaide etc. One doctor rang the surgeon in adelaide who talked her through a procedure to drain fluid from Mias brain.  My god! You have got to be joking  i thought...a doctor being talked through a procedure, not really knowing what to do? I thought id lose Mia for good! However, these doctors savec my little girls life,Mia was back but with breathing tube in. Her face and eyes were so puffed up you couldnt recognise her. It was like she had gone ten rounds with mike tyson! But hey, she was alive.

We were flown to darwin immediately...i had to quickly drive home to get some gear as we would be off to adelaide aswell for weeks. On the way home of course i was pullec over by police as the speed camera was out! What a great day i was having! They asked me why i was speeding i told them what had happened and before id finished my sentence they said, off you go, quick! Good to have cops with a heart!

When i arrived back at the hospital we waited for the ambulance to take us to the plane. Josh and Gosia (mother in law) said goodbye and we were off. In darwin she was taken straigt to theatre to have an EVD put in ~this is a drainage tube on the outside of her head, which drains the fluid from her ventricles. I was shown to a room with a bed where i could lie down and rest whilst Mia was in theatre. Not that i could rest. But i laid down, thinking, waiting.

Finally she was out and they came and got me and took me to her in ICU. I was shocked....Mia my beautiful litle girl  with long locks, with curls at the bottom was now bald, puffy and a tube breathing for her! After the initial shock weared off i was fine, thinking hair can grow back, she will get off this tube....at least she is here still.



mia at her 3rd bday- 6 months after surgery...hair growing back!

The next morning we were on our way to adelaide. After seeing he surgeons the decision was made that we had to wait for a new shnt to be put in as there wa blood in the fluid that was draining. It needed to be clear fluid for surgery. 

After three weeks we got that surgery and the new shunt was in. Now came the hard part. Mia woke up but didnt recognise me. Nothing i did would get her laughing like she used to. After a few days she tried to smile, but it wasnt Mias big smile she used to have. We then found she couldnt eat anymore,so it was tube feeding for my Mia.    I really felt i had lost my mia. One of the doctors thought mia might have had a stroke, but luckily that didnt happen. She had lost movement in her limbs and lost some vision. She wasnt tracking objects or lolking directly at me like she used to.


THIS WAS ALL MY FAULT

I AM HER MUM AND I DIDNT PICK UP THE BLOCKED SHUNT SIGN!!!! PUFFY EYES!  I HAVE DONE THIS TO HER! I OWE HER EVERYTHING!  I WILL NEVER LET THIS GUILT GO!

She was going so well in life until this dreadful day in october 2010.

I feel for her, being tube fed daily...not tasting that food again. She used to love food so much.
One thing that i really miss is her calling me mum. I havd never heard it since that day and i really dont know if i will hear it from her again. I am trying to get her to say it and she just laughs
 at me! :-)
When we returned home from adelaide, Mia was vey different and my husband told me he said goodbye to her in his arms that day she stopped breathing, when i was on my way home. He told her it was ok to go and she didnt have to stay if she was too tired, we would be alright.
My god! I thought...how can you say that to her? She cant leave us? She is our daughter.

Am i being selfish thinking this?

mia 8 months after surgery, trying to get her passport photo to head to the USA for therapy.

I love my daughter so much and i dont want to lose her. I know though that alot of special needs mums dont know how long we have our children for and we make everyday special. I try to spend as much time as i can with Mia everyday, incase it is my last. At times it is very hard doing eveything but she is my little girl and i love her to pieces. I feel like i have made her like this and i need to do what i can to make life as easy as possible for her, and as normal as it can be.

what a day...

hanging around emergency department for 3hrs waiting for a simple tube to be put on her nose so she can eat again! So frustrating...obviously wasnt as urgent as people with a sore throat or getting a cold! What happened to the time when cases were seen on importance? Here, today was the order you walked in! Not happy day!

On a good note mias webpage is nearly finished, her flyer is ready.....now it is time to get it out there and try to bet some donations for her. Im sure parents would hate to see their child like this. It isnt fair......i gave her some philly cheese, milo mousse, choccie yogo today on her lips and she loved it..licking heaps,  wanting more..i know she can eat, i know she will eat, i know she wants to eat again. Now we just need some generous people to help.

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

and the book ends...

And so that was my book- obviously there were heaps of photos throughout and i included a visual journey from birth aswell.

So, where to now? well so much has happened since then and things have gotten worse for my precious girl. We are still in the Territory but moved again!

Now we live in Katherine and now it is time for some new posts to update you and on where she is now.

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.

our time in PICU

Mia went through many challenges during her 2 weeks in PICU

but every challenge the doctors put to her she came out

fighting and won every round. I was so proud of her.

I spent a lot of time with Mia in PICU. I wasn't able to walk yet

comfortably, so Josh always wheeled me around in the

wheelchair. It was very sad being with her, but I was just so

happy each time I went in to see she was still alive. I was so

worried that each time I saw her it would be my last.

It was decided that on day 4 of her life she was to have surgery

to close the myelomeningocele. The neurosurgeons were

fantastic. I must say they were very serious to start with -

however, by our 7th week at the hospital, we were joking

together. It was explained that Mia might have to have a skin

graft if they couldn't close the skin in her back. I was a wreck

when it was time for her to go to theatre. Our anaesthetist was

very caring and understanding, however, I will never forget his

words as she was ready to go," say your goodbyes" which of course

made me cry even more as I leant over to tell her to hang

in there and fight and give her a kiss. I know he didn't mean it

how I interpreted it- to me it was as if I would lose her in

surgery. He saw how upset and worried I was, so he updated

Mia's nurse on a few occasions, who immediately informed us of

how she was going. Everything went extremely well and no skin

graft was needed. I was so appreciative for the updates over

the 4-5 hours she was gone.

I remember times when one specialist would be happy with her

progress and Josh and I would be feeling positive but then another

one would come in with a distinctly different tone and say 'but we

don't know if she can swallow she needs to clear her secretions no

one has heard her cough we don't think she can gag etc" Of course

this was devastating news for all I could think about was- what

does this mean for her?

I was a mess again. The doctors didn't' sound too positive about

Mia being able to do any of these things. They did not know the

determination and strength of my little Mia- she fought to come into

this world and has fought ever since, so needless to say she proved

them wrong on each account!

It's the simple things parents need to hear to keep them going just

to hear a doctor or a nurse say your baby looks good today

did a lot for me . It put that smile on my face, and made me feel

positive about the situation. That she would eventually get out of

PICU and one day home. I needed those days - and those

comments, instead of the negative ones all the time from Drs

telling me she can't do this she won't do that etc.

Babies with Spina Bifida have problems with their body

temperature- and Mia was no different. She was rugged up

in a heated cot; with a thick grow suit, 3 blankets and either

1 or 2 beanies on! We used to say to the nurses that she was

just simply not used to the cold Adelaide weather- she was a

Territory baby after all, she was used to the 40 degree heat!

These problems caused more stress for me when it came to

feeding. When we got Mia out for bottle feeds sometimes

her temperature would drop and she would experience

Bradicardic episodes, this is where the heart rate drops too

low. Most times Mia bought herself out from this and the

heart rate returned to normal, however, on one occasion she

didn't and the nurse had to stimulate her. This was a

nightmare for me - saying goodnight to her each night not

knowing what I'd be facing the following morning when I'd

arrive at PICU. Due to these episodes Mia went back onto

some Nasal Gastric tube feeding so she wasn't' coming out of

her warm cot so much.

When Mia was first born the Doctors thought she had a seizure so was

put on medication (phenobarb) to stop them. The amount of

medication was worrying to us as Mia seemed very dopey all day. After

a couple of weeks the Doctors discussed this issue and tested the

levels in her system. They found the levels were too high and so

decided to take her off it. After a week she was put back on a lower

dose- even though she hadn't had a seizure. Then Mia decided she

was going to sleep all day and be awake for the nurses at night

"partying with her fellow Bay 7 babes". I found out that she was given

her medication in the morning, so as this makes patients drowsy I

asked her doctor if it could be given at night so she was awake

through the day. Mia used to twitch a lot in her sleep as did my other

girls so whether Mia actually ever had a seizure or not will never be

known, but her rehab doctor who eventually took over her care

doubted that she was having them and so finally she was weaned off

the phenobarb over 5 days. This was great news for me as I felt she

would be more alert and wouldn't have a drug in her system that

wasn't necessary.

me and my mother in law beckie

The day finally came where Josh, Beckie and the girls had to go

home. This was very hard for me to say goodbye to them - not

knowing when I would see them again. We had no idea how long

Mia would be in hospital for, we expected to be there for a few

months. I was also concerned that I would be there all alone if

something went wrong and also making major decisions. Would I

cope alone?

Josh went back to Tennant and tried to arrange for job transfers to

Alice Springs. We needed to be closer to a major hospital and

airport. We definitely were not going back to Tassie. We hadn't

achieved what we came to the Territory for- that was to help and

teach our Indigenous peoples. Of course we had Mia to think of, and

we did. Josh and I both thought we could do it all, and to this day

we are. We also didn't want Mia wrapped in cotton wool, she is

going to live her life just as any other kid, and that's how we treat

her.

I moved into the ward with Mia and basically spent my days and

nights sitting with her, feeding, bathing etc. I didn't like leaving her

side. Occasionally I would walk into Rundle Mall and get her some

new clothes, toys- but not often.

our new bed on the ward

I had my first mothers' day with Mia in hospital. I woke up to a choccie

muffin and a beautiful message on her cot from her. (One of the night

nurses was busy throughout the night organising all this) Josh had left a

present for me which I opened with Mia- it was a gold mother and daughter

necklace which Mia will get half of when she is older. I got to spend the

whole day cuddling Mia and watching her sleep. What a perfect way to

spend the day.