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.