Category Archives: Uncategorized

Mia had the PEG inserted……

by Tania

Well I finally gave in and Mia and I travelled to Adelaide to have surgery to insert the PEG. This is a tube which is inserted into her tummy and she is fed through it 4/5 times a day. She gets 3feeds of formula called pediasure, and then I give her apple and cranberry juice throughout the day as well. This is to keep her bowels regular without medication and cranberry juice is good to prevent UTI ‘s. I still rub some food on her lips at times to see what she does, and so she doesn’t forget how to use her tongue and lips and also swallowing.

just before surgery with her tubie friend

having a feed at home

just back from surgery

 

I feel like a failure as I haven’t got her to eat again yet. I have been against this procedure for years! So to me it was a sign I failed her again in her life!

She ate before she can eat again…..I keep telling myself that , but you know I am beginning to doubt it. I am starting to believe this might be how she eats her ‘food’ for the remainder of her life.

I gave in when I was in hospital with Noah after he was born. And finally in June we had it done. Only took 7 months of waiting!  Anyhow, it is done now and is going well. It is nice seeing her face without any tape across her cheek and a tube in her nose and throat aggravating her.

without tubes and tapes across face!

 

 

 

Her surgery for the peg went well…she did however receive a collapsed lung from the anesthetic which was scary and kept her attached to oxygen for a few days.

Of course in true Tania style once I had decided she was going to have this surgery I jumped on the iPad and researched all i could about the procedure. It is in two seperate surgeries…first one puts the hole in the tummy and places in a temporary tube for 4 months. Once this heals we go back to Adelaide for the next step which is placing a Mic-key button on. The tube comes out and button on. Then at each feed or time for medication we undo the button and place a tube in to feed and then do the button back up. I am looking forward to this step as I really hate having a tube hanging down from her tummy.

In my research I came across products called belly belts and g-tube pads. I ordered from a lady called the patchwork peddler. (www.patchworkpeddler.com)  These are little round pads which sit around the wound site and help in healing, they have a soft layer of material which sits on the skin, a layer of bamboo material in the middle and then a patterned layer on top to make it look pretty! You can see one in the photo of Mia. I also ordered a belt which hides the tubing away …and for me keeps it out of reach of Noah’s little hands, now that he is on the move! ;)

g pad

 

These are really smart products which no one here in Katherine have seen before.  Mia is setting a trend with her cool tube wear!!! And we have more on the way!

 

Plus trendy bibs which look like bandanas you wear around your neck from www.hipperbibs.com again American  but look great!

It took me awhile to get used to cleaning the site  …being able to see under the skin, cleaning pus, blood etc away daily. I am a little concerned at the healing now however, it has been fine until last week it started to get red and more ouze and pus than usual! Also it seems like a new bit of skin is growing on one side of the hole. I think it is called granulation but can’t be sure. I have googled pictures but it doesn’t look  the same. We have an appointment with her doc next week so will get it checked then.

I have joined a few Facebook pages to do with tube feeding and found these beautiful ladies who make tubie friends for kids having tubes placed. I just had to have one for Mia …of course it was in America! I so wish I lived there! But they were very nice and agreed to me having one IF I paid for postage, I would have paid for the teddy bear too! They rely on donations of equipment, money, and the bears are from design a bear. Jordan, Mia’s sister who is 7 found it very interesting to be able to put the tube in the button and pretend to feed the bear. It is a great teaching tool for siblings and for the kids having them. It must be hard being a kid with a button on your tummy and hooked up to a pump or syringe to be fed everytime! At least this way they are not alone as their little friend gets the same treatment!

In October we head back to Adelaide to get the button placed. I suppose I need to accept this is part of Mia’s life now. I still have my daughter and that’s the main thing. I shouldn’t worry that she is fed through a stomach tube…… I will keep telling myself this!

 


Water therapy

by Tania

 

Mia loves the water and living in the Territory it is a must to be able to cool off!

She is free in the water….at times it is like she doesn’t have any disabilities, she gets so excited and all 4 limbs move like she is doing breaststroke. I love seeing her like this, but sadly we don’t get to access the local town pool as much as I would like or as she needs.

I have been researching aides to use in the pool to give her more freedom and after using a couple I came across a site called www.waterwaybabies.com .

Nancy Higgs started the business of making these neck rings and small warm pools for therapy in 2008. She now ships her products to 39 countries (in addition to the USA where she lives), to a variety a people with various disorders and disabilities. She strongly believes in the benefits of warm water therapy.

The product itself is quite simple …a plastic ring which wraps around the neck and keep the child upright in the water, to do therapy or just to move around.

I bought one for Mia and her brother Noah. He too is a water baby. Even though he has no developmental delays I wanted him to have freedom in the pool as he loves water so much!

This product is definitely worth checking out!


Therapies 4 Kids USA

by Tania

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.”

 

Quotes 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 like cheeky, cheeky, cheeky ( as mia was very cheeky with her)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!


Please help my Mia

by Tania

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…with the help of my brother in law!!!  Mias miracle is her facebook page…please have alook again it only got started today! like it, share it pass the word around, help her eat again!


Arnold Chiari 11 malformation

by Tania

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.


Mia Starts Pre-school

by Tania

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!


The day Mia stopped breathing

by Tania
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.


future

by Tania
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…

by Tania
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

by Tania
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.


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