Wednesday, 21 March 2012

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!

Tuesday, 6 March 2012

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.