Amelia's Project has begun for 2012.
It is like a "well oiled" machine has begun running again.
Last year at our very first meeting, approximately 45 people came.
I sat up the back nervously shaking and listened while "The Power Machine"
(Jemimah) began the conversation of fundraising and helping US.
That night they set a goal amount of $20,000 to raise during the year.
That money would send us to Disneyland.
I can remember being both extremely humbled by the support and incredibly guilty they were dedicating so much time to US.
This constant guilt took 6 months to subside.
Every time we have a meeting it appears again.
There were so many Amelia's Project events last year.
It was very overwhelming.
Sausage sizzles, Cup cake stall, MacDonalds Night, Amelia's Project tins, random cash donations and the biggest fundraiser I have ever attended "The Amelia Night".
Donations for this night mainly came from friends, families and local businesses.
Forget the BIG corporations, almost everything came from those around us.
It was relaxed, fun and social.
It was a celebration of life
It was a room full of love and kindness.
230 people were there.
We made sure the "negative, sad and informative" was done at the beginning and finished with a fun, inspiring speech to "make your life amazing".
Then the auctions and raffles began.
So did the alcohol and socialising.........
Five hours later an announcement was made that we had made OVER $50,000.
You could have heard a pin drop in the silence.
Seconds later there was a ROAR of happiness, surprise and excitement.
We were going to Disneyland.
We took our little girl to see "the most magical place on earth" and it definately lived up to that.
This year the goal is money for an electric wheelchair, car and car conversion.
Our quote so far is $37,000 + $37,000.
We are obviously trying to research every option available.
The BIG thing for this year......???
The Amelia Night !!!!
Frankston RSL have kindly offered to have us again.
Darren Eichenberger has also kindly offered to MC again.
Tickets will be $60 each which includes 3 courses, DJ and a dance floor.
It will be on Saturday 4th August at approximately 6:30pm.
I have begun my search for donations.
Amelia's Project Committee are beating me in the amount collected.
I MUST WIN.
I MUST GET MORE THAN THEM !!!!!
If you can please feed my competitive nature and let me know if you can help me with ANY KIND of donation (big or small) please let me know!
We have a master copy of our donation letter so please email ameliasproject@yahoo.com.au to request one, if you can assist in me WINNING the amount collected !!!
Vouchers, gift cards, products of any kind, homemade items, memorabilia, holiday accomodation, furniture, alcohol, a new car (ok, we probably will not get that!!!!!) ANYTHING !
Now TICKETS.
This year we will be selling 200 tickets.
People are already talking tables and single tickets.
PLEASE, PLEASE, PLEASE start getting yourself (and whoever else) organised.
Due to the overwhelming demand, the tickets will go on sale on
TUESDAY 1st MAY at 10am.
Contact details for ordering tickets will be publicised soon.
I do want anyone to miss out.
Finally I want like to file a complaint.
The committee said we need a DJ for entertainment.
I thought I was the entertainment last year with my alcohol consumption ???!!!!
Very offended girls ......... !!!!
xxx
Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.
Sunday, 11 March 2012
Thursday, 8 March 2012
An encounter of the unusual kind......
Two entries in the last 24 hours.
I am on a roll !!!
But something happened this morning that I really have to tell you about.
Amelia and I went to the shops after dropping Tom at school.
Amelia will be attempting going to mainstream school after recess on a Thursday as well as all day Fridays.
Her new teacher has "struck a chord" with Amelia by getting the children to do "projects".
Amelia LOVES projects and was eager to try and attend today.
Anyway back to my story.......
We went to our local shopping centre.
Amelia is loving saving up her money and buying "things" that she has liked in our "browse the shops" days.
She was desperate to get a Moshi Monster bracelet she really liked.
After we had finished talking to our friend, Meredith, a man hand signaled us to come over.
Having no idea what he wanted, I went over cautiously.
He was elderly and appeared restless.
"Are you ok?" I asked.
He leaned into me after staring at Amelia for what seemed an eternity and said
"What is wrong with her?".
He was European and had a very strong accent.
"Ataxia Telangiectasia or A-T" I answered.
He kept staring at her and appeared to become even more restless.
Then he started crying.
I didn't know what to do and realised Amelia was right there with us so I said
"She is ok Sir. She is very happy. She will be fine".
"Can I please do something with her" he asked......pleading.
"Ok" I said wondering where the hell this was going.
He handed me his bags and placed his hands within inches of the side of her head.
He starts humming words I do not understand.
Amelia stares at him in wonder.
He moves his hands from the top and bottom of her head and to the sides constantly while reciting these unknown words.
By this stage he is sobbing.
After approximately 60 seconds he stops.
Says "she will always have an angel with her now"
grabs his bag and walks away.
Did he know?
Did he know just from looking at her?
Did he feel something when his hands were close, the fact he got so upset?
I do not know but the feeling I had after he left was unbelievable.
It was calming.
It was surreal.
Amelia?
She was just so happy to take an angel to school with her !!
xxx
I am on a roll !!!
But something happened this morning that I really have to tell you about.
Amelia and I went to the shops after dropping Tom at school.
Amelia will be attempting going to mainstream school after recess on a Thursday as well as all day Fridays.
Her new teacher has "struck a chord" with Amelia by getting the children to do "projects".
Amelia LOVES projects and was eager to try and attend today.
Anyway back to my story.......
We went to our local shopping centre.
Amelia is loving saving up her money and buying "things" that she has liked in our "browse the shops" days.
She was desperate to get a Moshi Monster bracelet she really liked.
After we had finished talking to our friend, Meredith, a man hand signaled us to come over.
Having no idea what he wanted, I went over cautiously.
He was elderly and appeared restless.
"Are you ok?" I asked.
He leaned into me after staring at Amelia for what seemed an eternity and said
"What is wrong with her?".
He was European and had a very strong accent.
"Ataxia Telangiectasia or A-T" I answered.
He kept staring at her and appeared to become even more restless.
Then he started crying.
I didn't know what to do and realised Amelia was right there with us so I said
"She is ok Sir. She is very happy. She will be fine".
"Can I please do something with her" he asked......pleading.
"Ok" I said wondering where the hell this was going.
He handed me his bags and placed his hands within inches of the side of her head.
He starts humming words I do not understand.
Amelia stares at him in wonder.
He moves his hands from the top and bottom of her head and to the sides constantly while reciting these unknown words.
By this stage he is sobbing.
After approximately 60 seconds he stops.
Says "she will always have an angel with her now"
grabs his bag and walks away.
Did he know?
Did he know just from looking at her?
Did he feel something when his hands were close, the fact he got so upset?
I do not know but the feeling I had after he left was unbelievable.
It was calming.
It was surreal.
Amelia?
She was just so happy to take an angel to school with her !!
xxx
Wednesday, 7 March 2012
The Wonder of Google
Welcome to my new hobby.
Researching Ataxia Telangiectasia and finding out what is being discovered.
Some of it may be false and some may take the researchers to a dead end
BUT
One of the only things that helps me get through my day is
HOPE.
I have done some cutting and pasting and thought you may all enjoy reading what I have found so far.......
Research is still going on in this respect.
Dear A-T researchers and clinicians:
Earlier this month, the A-T Children's Project joined others in sponsoring a meeting in India that included presentations about the ATM protein and related biological pathways. In addition, an excellent, clinically-oriented meeting has been planned by our English colleagues for this June that will focus on imaging studies, clinical scales, optimizing the management of the pulmonary, cancer and immune problems in patients, and therapeutic strategies such as steroids and read-through compounds.
I have now asked our A-T Children's Project staff to organize a third conference, for October of this year, that will focus solely on treatments for the neurological problems of ataxia-telangiectasia, sharing minimal overlap with these other meetings.We hope to bring together longstanding A-T researchers and clinicians as well as newly recruited experts in cerebellar function, movement disorders and drug discovery to prioritize treatments that can be tested in patients soon and to identify obstacles that may be preventing more rapid discovery and evaluation of additional therapies.
Researching Ataxia Telangiectasia and finding out what is being discovered.
Some of it may be false and some may take the researchers to a dead end
BUT
One of the only things that helps me get through my day is
HOPE.
I have done some cutting and pasting and thought you may all enjoy reading what I have found so far.......
With the treatment for Ataxia Telangiectasia patients
getting into full swing, it is very soon that the condition can be handled very
well professionally.
Justcancer.org
EryDel S.p.A. (Urbino, Italy) said EryDex encapsulated in
autologous erythrocytes met the primary endpoint in a Phase II trial in 22
patients with genetically-confirmed ataxia telangiectasia. The product
significantly reduced the total International Cooperative Ataxia Rating Scale
(ICARS) score from baseline to six months vs. controls (p=0.02). The controls
were not disclosed. EryDex is a solution of dexamethasone delivered by
encapsulation into autologous erythrocytes. EryDel plans to discuss the results
with regulatory authorities and develop plans for additional trials that would
lead to filing for worldwide regulatory approval. Ataxia telangiectasia is a
progressive neurological autosomal recessive disorder
Bioportfolio.com
Allogeneic hematopoietic stem cell transplantation (HSCT)
has not been a therapeutic option in ataxia telangiectasia (AT) due to
overwhelming toxicity of conditioning in the context of the global DNA repair
deficiency. Furthermore HSCT is unable to cure neurological involvement of AT.
ncbi.gov
We are
very excited to share this note that Brad Margus sent to over 400 researchers
and clinicians:
Dear A-T researchers and clinicians:
Earlier this month, the A-T Children's Project joined others in sponsoring a meeting in India that included presentations about the ATM protein and related biological pathways. In addition, an excellent, clinically-oriented meeting has been planned by our English colleagues for this June that will focus on imaging studies, clinical scales, optimizing the management of the pulmonary, cancer and immune problems in patients, and therapeutic strategies such as steroids and read-through compounds.
I have now asked our A-T Children's Project staff to organize a third conference, for October of this year, that will focus solely on treatments for the neurological problems of ataxia-telangiectasia, sharing minimal overlap with these other meetings.We hope to bring together longstanding A-T researchers and clinicians as well as newly recruited experts in cerebellar function, movement disorders and drug discovery to prioritize treatments that can be tested in patients soon and to identify obstacles that may be preventing more rapid discovery and evaluation of additional therapies.
email from AT Children's Project.
Follow the link below and watch the 2 videos
Status copied from A-T Society, UK. Message from William our Chief Exec - Research is coming together! The ATW conference in India has just taken place; the A-T Society is organising a big Clinical Research Conference in Cambridge in June (21- 23rd, just before the family day); and now I gather that the AT Children's Project are looking to organise a third conference in the autumn on treatments for the neurological aspects of A-T. Things are really starting to move. Exciting times..!
Facebook
The initial report on the Italian Dexamethasone trial led by Prof Luciana Chessa are out. In this trial, patients received the drug via a new technique where it is inserted directly into the red cells of the patients’ own blood. The good news is that there was a complete absence of the typical steroid side effects and there was a significant improvement in the neurological symptoms of some participants. However, there were also problems in getting the drug into the red-cells of some patients, which hadn’t been experienced with other conditions. The researchers, though, are positive they can resolve these problems and are hoping to organise a bigger trial in the near future. We will be studying the full results when published and working with them to assess the value and feasibility of setting up an arm of the trial in the UK.
William
William
AT Society in the UK.
xxx
Tuesday, 6 March 2012
The Positive Climb.....
On Sunday night I wrote a very depressive blog.
I realise that it is part of our "journey" and the feelings that make me "human", but I still do not like entering that world.
It is easier to get up in the morning and get through every day if we are looking at the positives in our lives.
I have a daughter dying slowly
OR
I am SO lucky to have this little girl in my everyday life.
Which is better to live by?
It is easier to "carry on" with the latter version.
Well I believe anyway.
I also understand that we need to look at the "negative side" to stay grounded.
Last weekend we were presented with the negative side.
And we needed to be.
We have to make major changes..........
NOW.
Amelia needs her self esteem, self-confidence and independence if she is going to have an "amazing life".
And our house, car and outings need to provide this for her.
But I needed this depression.
I needed the crying.
I needed to sit alone to accept THIS is happening.
Amelia has declined and we need to make changes to EVERYTHING.
OR
We are REALLY on the pathway to losing our baby now.
OR BOTH.
I still cry now writing this BUT I am more accepting of it.
Recently I have had the pleasure of two newly diagnosed A-T families contacting me.
They found me through this blog.
We are like family.
A-T families will ALWAYS be together.
There is no judgement or assumption.
We understand each other.
But then there are the others........
My friend who is struggling with panic attacks.
My friend who's daughter has just been diagnosed with a learning disorder.
The mother of a child who's diagnosis is parallel with Amelia's.
These people have all contacted me.
ME.
I am absolutely honoured that ANY of the people mentioned above thought to TELL me.
I was always a friend to those in need and I always will be.
I had a BIG "falling out" with a family member on the weekend.
My dad always taught me "that your friends are just as crucial and important as your family".
I think the last 15 months have proved that.
Thank you to everyone in MY life.
But I say through many tears (healthy ones).......
if you are ever, ever, struggling please contact a friend..........
Many times this week I have played this song.
Please click the link and LISTEN to the words.
http://www.youtube.com/watch?v=rCDZzf4ragg
xxx
I realise that it is part of our "journey" and the feelings that make me "human", but I still do not like entering that world.
It is easier to get up in the morning and get through every day if we are looking at the positives in our lives.
I have a daughter dying slowly
OR
I am SO lucky to have this little girl in my everyday life.
Which is better to live by?
It is easier to "carry on" with the latter version.
Well I believe anyway.
I also understand that we need to look at the "negative side" to stay grounded.
Last weekend we were presented with the negative side.
And we needed to be.
We have to make major changes..........
NOW.
Amelia needs her self esteem, self-confidence and independence if she is going to have an "amazing life".
And our house, car and outings need to provide this for her.
But I needed this depression.
I needed the crying.
I needed to sit alone to accept THIS is happening.
Amelia has declined and we need to make changes to EVERYTHING.
OR
We are REALLY on the pathway to losing our baby now.
OR BOTH.
I still cry now writing this BUT I am more accepting of it.
Recently I have had the pleasure of two newly diagnosed A-T families contacting me.
They found me through this blog.
We are like family.
A-T families will ALWAYS be together.
There is no judgement or assumption.
We understand each other.
But then there are the others........
My friend who is struggling with panic attacks.
My friend who's daughter has just been diagnosed with a learning disorder.
The mother of a child who's diagnosis is parallel with Amelia's.
These people have all contacted me.
ME.
I am absolutely honoured that ANY of the people mentioned above thought to TELL me.
I was always a friend to those in need and I always will be.
I had a BIG "falling out" with a family member on the weekend.
My dad always taught me "that your friends are just as crucial and important as your family".
I think the last 15 months have proved that.
Thank you to everyone in MY life.
But I say through many tears (healthy ones).......
if you are ever, ever, struggling please contact a friend..........
Many times this week I have played this song.
Please click the link and LISTEN to the words.
http://www.youtube.com/watch?v=rCDZzf4ragg
xxx
Sunday, 4 March 2012
The Fairy tale is over
Last year was like a fairy tale in an odd kind of way.
Disneyland.
Newspaper Interviews.
Television.
Friendship and support beyond our wildest dreams.
The positive attitude and "amazing life" goal came naturally, because of the love and attention put on our daughter.
It made you believe everything was going to be fine.
If something like Amelia's Project could achieve so much, then HOPE was not such a difficult feeling.
We can do this.
We will sail through this with a smile on our faces.
Our Amelia would have the best life EVER.
She may even be cured in the future.
And she still may but this week showed us the very sad side of our future.
Today our beautiful OT came to our house (yes on a Sunday).
She wanted to talk to both Scott and I.
We spoke about what Amelia needs now and in the very near future.
Very overwhelming.
My gorgeous neighbours took the kids when I realised they could not hear what we were discussing.
(Thank you Mardi and Jason).
Here are some of the things discussed.
Hand rails front and back doors (approx $1000)
Hand rails on the toilet (approx $100)
Hoist or bath seat to get Amelia in the bath (approx $3000)
Ramps at front and back doors (approx $3000)
Replace 4 windows with safety glass (approx $1300)
Electric wheelchair (anywhere up to $30,000)
New car (sell mine)
Car conversion (anywhere up to $40,000)
Door frame widening (?)
Rearrange furniture in house for mobilty
Possibly turning our outside pergola area into a room, thus turning our long narrow house into a more open plan and easily accessible home for Amelia (approx $100,000)
This is all I can remember.
This is our future.
Everything is not going to be fine anymore........
xxx
Disneyland.
Newspaper Interviews.
Television.
Friendship and support beyond our wildest dreams.
The positive attitude and "amazing life" goal came naturally, because of the love and attention put on our daughter.
It made you believe everything was going to be fine.
If something like Amelia's Project could achieve so much, then HOPE was not such a difficult feeling.
We can do this.
We will sail through this with a smile on our faces.
Our Amelia would have the best life EVER.
She may even be cured in the future.
And she still may but this week showed us the very sad side of our future.
Today our beautiful OT came to our house (yes on a Sunday).
She wanted to talk to both Scott and I.
We spoke about what Amelia needs now and in the very near future.
Very overwhelming.
My gorgeous neighbours took the kids when I realised they could not hear what we were discussing.
(Thank you Mardi and Jason).
Here are some of the things discussed.
Hand rails front and back doors (approx $1000)
Hand rails on the toilet (approx $100)
Hoist or bath seat to get Amelia in the bath (approx $3000)
Ramps at front and back doors (approx $3000)
Replace 4 windows with safety glass (approx $1300)
Electric wheelchair (anywhere up to $30,000)
New car (sell mine)
Car conversion (anywhere up to $40,000)
Door frame widening (?)
Rearrange furniture in house for mobilty
Possibly turning our outside pergola area into a room, thus turning our long narrow house into a more open plan and easily accessible home for Amelia (approx $100,000)
This is all I can remember.
This is our future.
Everything is not going to be fine anymore........
xxx
Friday, 2 March 2012
Happy Amelia
This afternoon I asked Amelia a question that I regularly ask.......
"How are you ?"
Immediately the answer shocked me.
I did not realise how much I do not hear it.
She said "good".
Recently the answer has been sad.
Complaining, depressed and generally "not good".
This whole week she has been smiling, laughing and saying insanely clever "one liners".
We are all loving it, even people that do not see her regularly are noticing the difference.
From the minute she arose this morning she did not want to go to mainstream school (her 1 day !).
But she has had a happy day and may even attempt the two days she is meant to attend next week.
YESTERDAY - Had a meeting with Amelia's OT. We discussed all of the equipment Amelia needs right now and what she will need in the near future.
Things like shower chairs, a hoist to get into the bath, computer software, communication devices, cutlery, motorised wheelchair (and then car conversion), handles on toilets, ramps and handrails etc etc etc.
Amelia and I also drove to a "showroom" in Mornington.
I received a quote for $2400.
This was for everything that I saw that we needed right now.
I never knew any of these products existed.
Overall VERY OVERWHELMING.
So I had a 3 drinks last night and fell asleep at 7:20pm.
Woke up at 6:30am this morning.
I think that I totally blacked out and shut down.
We will be attending an appointment soon to look at motorised wheelchairs.
The irony ????
Amelia LOVES the special school.
LOVES the bus that comes and picks her up.
LOVES that she needs a motorised wheelchair.
She is genuinely excited about it all.
Me?
I am torn.
Sad that she needs all of these things
BUT
so, so, so happy because I have not seen her this happy in a while.
There is so much more to talk about like NEW RESEARCH and TRIALS and TOM but I am too tired right now.
So I will leave you with something Amelia said yesterday.
We had just got home from taking Tom to basketball training.
"While I get tea ready, what would you like to do or play?" I asked.
She said in a theatrical voice
"Take me to your leader".
"What?" I asked laughing.
"The Computer.......I want to play games".
Maybe it was a "had to be there" but I found it very witty.
Will speak soon.
Amanda
xxx
"How are you ?"
Immediately the answer shocked me.
I did not realise how much I do not hear it.
She said "good".
Recently the answer has been sad.
Complaining, depressed and generally "not good".
This whole week she has been smiling, laughing and saying insanely clever "one liners".
We are all loving it, even people that do not see her regularly are noticing the difference.
From the minute she arose this morning she did not want to go to mainstream school (her 1 day !).
But she has had a happy day and may even attempt the two days she is meant to attend next week.
YESTERDAY - Had a meeting with Amelia's OT. We discussed all of the equipment Amelia needs right now and what she will need in the near future.
Things like shower chairs, a hoist to get into the bath, computer software, communication devices, cutlery, motorised wheelchair (and then car conversion), handles on toilets, ramps and handrails etc etc etc.
Amelia and I also drove to a "showroom" in Mornington.
I received a quote for $2400.
This was for everything that I saw that we needed right now.
I never knew any of these products existed.
Overall VERY OVERWHELMING.
So I had a 3 drinks last night and fell asleep at 7:20pm.
Woke up at 6:30am this morning.
I think that I totally blacked out and shut down.
We will be attending an appointment soon to look at motorised wheelchairs.
The irony ????
Amelia LOVES the special school.
LOVES the bus that comes and picks her up.
LOVES that she needs a motorised wheelchair.
She is genuinely excited about it all.
Me?
I am torn.
Sad that she needs all of these things
BUT
so, so, so happy because I have not seen her this happy in a while.
There is so much more to talk about like NEW RESEARCH and TRIALS and TOM but I am too tired right now.
So I will leave you with something Amelia said yesterday.
We had just got home from taking Tom to basketball training.
"While I get tea ready, what would you like to do or play?" I asked.
She said in a theatrical voice
"Take me to your leader".
"What?" I asked laughing.
"The Computer.......I want to play games".
Maybe it was a "had to be there" but I found it very witty.
Will speak soon.
Amanda
xxx
Wednesday, 29 February 2012
Lots and Lots xxx
Today has been a really good day.
Enjoy it while you can people....
I am only now realising that I feed off my children's energy.
If they are happy, I am happy.
If they are sad, I am stressed.
If they are angry, I am stressed.
If they are stressed, I AM STRESSED.
Yesterday Amelia brought tears to my neighbour's eyes as she approached the special school bus.
It was the first day of this bus picking her up and dropping her home.
Her choice, not mine.
Today she ran out the door (crashing her walker into walls and doors) and attempted to run up our very steep driveway.
Amelia was giggling and smiling as she tried to run.
So today she brought happy tears to my eyes.
The staff on the bus are hilarious and full of fun.
What a wonderful start to the day for all of us.
REWIND.............
Last Thursday we left for Mildura.
We managed to do 1300 km in four days !!
Scott's Gran turned 90 on the Saturday and we had a great time catching up with Scott's cousins and there young families.
All the Great- Grandchildren with Gran.
Gran's children and grandchildren.
No matter where you were in Victoria last weekend, there was a MASSIVE heatwave.
Thank goodness for Kylie's pool.
Queen Amelia and Princess Caitlyn (our gorgeous niece).
Tom on "the tube" in the Murray River.
Amelia also SHOCKED us all and had a turn too!!!!
Unfortunately I cannot show you those photo's.
There is A LOT going on at the moment concerning new equipment for Amelia.
Tomorrow I am having a meeting with our OT to try and write down a list.
Everyone is telling me to " look at this " , "research that" and "you need to order".
So as I leave to google electric wheelchairs, car conversions, cutlery and shower chairs, I would like to tell you a story.
For the privacy of the children involved, no names will be used........
Once upon a time a little girl started at a Special School.
She made friends very quickly and spoke of them often.
Then one day the little girl came home and kept talking about one boy in her class.
The mother of the little boy said he constantly talks about this little girl too.
He told his mum that he thinks she is pretty.
The little girls mummy thinks this is so cute.
They like each other.
The little girls daddy is not so sure.
The mummy of the little girl already adores this boy so she is pleased that they are establishing a friendship.
The next day the mummy discovers that the boy is almost 12 years old.
This little girl is only 8.
Oh dear.
What will the little girls daddy think now ??!!
The little girls mummy had to go into the classroom today and this gorgeous boy asked for the little girl's phone number.
The mummy cannot wait to tell the daddy about this.
And we end the story today with after the little girl came home from her new special school and her mummy asked about "what she did at playtime?"
The little girl answered innocently "WE played mummy's and daddy's".
Mummy could not contain herself anymore.
She fell to the ground in hysterical laughter.
Mummy was going to need to film the daddy's facial expressions tonight.
Who was the dad?
The boy.
Who was the mum?
A different little girl.
"What were you then?" the mummy asked the little girl.
"THE STEPMUM !!!!!!"
xxx
Enjoy it while you can people....
I am only now realising that I feed off my children's energy.
If they are happy, I am happy.
If they are sad, I am stressed.
If they are angry, I am stressed.
If they are stressed, I AM STRESSED.
Yesterday Amelia brought tears to my neighbour's eyes as she approached the special school bus.
It was the first day of this bus picking her up and dropping her home.
Her choice, not mine.
Today she ran out the door (crashing her walker into walls and doors) and attempted to run up our very steep driveway.
Amelia was giggling and smiling as she tried to run.
So today she brought happy tears to my eyes.
The staff on the bus are hilarious and full of fun.
What a wonderful start to the day for all of us.
REWIND.............
Last Thursday we left for Mildura.
We managed to do 1300 km in four days !!
Scott's Gran turned 90 on the Saturday and we had a great time catching up with Scott's cousins and there young families.
All the Great- Grandchildren with Gran.
Gran's children and grandchildren.
No matter where you were in Victoria last weekend, there was a MASSIVE heatwave.
Thank goodness for Kylie's pool.
Queen Amelia and Princess Caitlyn (our gorgeous niece).
Tom on "the tube" in the Murray River.
Amelia also SHOCKED us all and had a turn too!!!!
Unfortunately I cannot show you those photo's.
There is A LOT going on at the moment concerning new equipment for Amelia.
Tomorrow I am having a meeting with our OT to try and write down a list.
Everyone is telling me to " look at this " , "research that" and "you need to order".
So as I leave to google electric wheelchairs, car conversions, cutlery and shower chairs, I would like to tell you a story.
For the privacy of the children involved, no names will be used........
Once upon a time a little girl started at a Special School.
She made friends very quickly and spoke of them often.
Then one day the little girl came home and kept talking about one boy in her class.
The mother of the little boy said he constantly talks about this little girl too.
He told his mum that he thinks she is pretty.
The little girls mummy thinks this is so cute.
They like each other.
The little girls daddy is not so sure.
The mummy of the little girl already adores this boy so she is pleased that they are establishing a friendship.
The next day the mummy discovers that the boy is almost 12 years old.
This little girl is only 8.
Oh dear.
What will the little girls daddy think now ??!!
The little girls mummy had to go into the classroom today and this gorgeous boy asked for the little girl's phone number.
The mummy cannot wait to tell the daddy about this.
And we end the story today with after the little girl came home from her new special school and her mummy asked about "what she did at playtime?"
The little girl answered innocently "WE played mummy's and daddy's".
Mummy could not contain herself anymore.
She fell to the ground in hysterical laughter.
Mummy was going to need to film the daddy's facial expressions tonight.
Who was the dad?
The boy.
Who was the mum?
A different little girl.
"What were you then?" the mummy asked the little girl.
"THE STEPMUM !!!!!!"
xxx
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