Thursday, 25 June 2015

Fundraising for a Car Modification - Can you help?

Faith going for a walk in the park in Armidale
happy days!
I have been a bit quiet on my blog as late as I am currently studying but I will return in a few short months.

Our big quest at the moment is raising funds to modify our car so that I can take Faith out and about. Wonderfully Faith has her power wheel chair and it is wonderful, but it is too heavy for me to lift in and out of the car (it is 60kgs plus). It is crucial for her back to be supported to slow the progression of her scoliosis so we are desperately raising funds so we can modify our car.

The cost of the modification is $6,880 and we currently have no funds for it. Since we have just raised so much money for her wheel chair there isn't many options left. We feel very blessed to have been able to purchase her power wheel chair.

If you have any ideas or know of any groups or organisations that might be able to assist I would greatly appreciate your comment or please feel free to email me.

It's hard asking for help but if you would like too below is our details.

Bank: The Greater Building Society
Account name: RJ Holland (Trustee)
BSB: 637 000
Account number: 720 378 256

You can contact me:
beckyjoyholland (at) gmail (dot) com

Saturday, 23 May 2015

On Holidays - Exploring - Part 1

Faith loves to explore and we all love to take long walks,
 especially when it is wheel chair friendly!

It is time for a change of pace and scenery and so we take to the road at long last. A road trip!

We have been blessed to be gifted some time away.

Outside Coffs Harbour

Blessed to have such a view - Coffs Harbour

Thursday, 7 May 2015

How My Daughter Taught Me That Every Moment Is A Gift - The Huffington Post

How My Daughter Taught Me That Every Moment Is A Gift. 

I never thought I would have the chance to see what it is like to see a child grow healthy and strong without medical intervention. It is a beautiful experience. It is so easy to compare milestones when your child doesn't reach them. So for now, and this moment of beauty, I have chosen to make my own.

Drop by The Huffington Post to read more.

Monday, 27 April 2015

ANZAC Centenary

Saturday 25 April 2015 (ANZAC Day) commemorates Australia's involvement in World War 1. Communities all over Australia and the world remembering the landing at Gallipoli on 25 April 1915. 2015 is the 100th anniversary of this moment. ANZACs stands for (Australian and New Zealand Army Corps). I still remember being seventeen and visiting Anzac Cove, Turkey for the first time. I was taken by the beauty of the landscape. I wondered how a place so beautiful shared such a tragic story. As I walked along the stone beach I was sad for the lives lost but with such gratitude for the sacrifice made.

Today, as many people travel to ANZAC services in their own town we drive an hour and half to a town with less than 500 hundred and join in their remembrance of the fallen at Gallipoli.

The weather is perfect and the air is fresh with barely a cloud in the sky. I can't recall the last time I attended an ANZAC Day march but I am honored to be part of it. As we watch the march, there is pride in the faces of those marching showing their care, respect and gratitude of those past men and women lost at Gallipoli. This is also a time to remember all those who serve in the defence forces and the sacrifices they have made.

Lest we forget

What to know more? click here

Woodenbong ANZAC Day March

Outside Woodenbong

Just outside Woodenbong

Mt Lindesay - Near Woodenbong NSW

Thursday, 23 April 2015

Blended Diet Faith Style

What is a blended diet?
It is when you blend food in a high power blender and push it through a feeding tube. We choose to use the Vitamix Blender. 

Where did we purchase our Vitamix?
We purchased it through Raw Blend. The were fast with delivery and we received quite a few extras.

What has it achieved for Faith?

  • Faith's hair has grown. Her hair went from fine to thicker curls.
  • Her nails are stronger. Faith's nails used to be quite weak and in combination with the blended diet and extra salt, her nails grew stronger.
  • Faith weight increased slowly and stayed on. It is still a battle and we are always tweaking her blend but it works.
  • Faith has a healthy glow to her skin.
  • We found when Faith was having a lot of commercial formula her vomits were huge and frequent. She stills vomits daily and this is due to many reasons but we have seen less daily vomited with a blended diet. 
  • Faith would wake many times unwell and now she has blended food her sleeping improved.
  • General well being improved.  
How often do we blend? We blend once every two weeks and freeze the blended food. We find this works bests for us.

A Family Affair
Blending at our house is a family affair. We all have a job whether buying, cooking, blending, or sieving. 

It has taken us a long time to find the perfect blend for Faith but we are at last happy with it.

What syringes do we use?
We use Baxa 20ml syringes as we find that works best for us.

'Blend Burnout'

The blended diet is hard work and we all get 'blend burnout' every now and then. It is worth it as we see less vomit and Faith grow. That is the reward for all the hard work.

What can go wrong?
When Faith had her NG Tube we only got it clogged once or twice and that was due to some probiotic that went clumpy. We were always careful the NG tube was inserted correctly. 

We haven't had any blockages with the Mic-Key or Bard Buttons.

How we travel with blended food

When we travel we have a car fridge so the blend stays cool and fresh. We use the Engel fridge/freezer.

We are currently in the process of organising an additional battery to our 4WD as with the fridge/freezer and exploring the possibility of a car hoist for Faith's wheel chair we would drain the battery. Also, as soon as the ignition is turned off the fridge/freezer turns off.

Wednesday, 22 April 2015

I'm on The Huffington Post

The Huffington Post are sharing my post on Having a Disability Is Not Wrong

This is my first story on The Huffington Post and I feel very honored and very excited.

Monday, 20 April 2015

Having a disability IS NOT wrong

Very excited to have this post published over at The Huffington Post!

Ten top questions it is best not to ask a special needs parent

Being honest is hard. When life is different to the 'norm' it can be hard to know what to say. In the early days the below questions confronted me and hurt even if a person means well it doesn't make it easy to answer. These days they don't bother me as much but I still don't like them.

1. “What's wrong with her?” If you are a stranger think about whether it is any of your concern. It might hurt the mum involved or perhaps it is too complex to explain. I don't mind talking about my daughter but it's not everyone's business. Nothing is wrong with her. Having a disability is not wrong.

2. “I understand what you mean”. This can mean well, but unless you are living a version of it you simply can't understand - empathy is much nicer.

3. “God only gives you what you can bear”. This is a tough one and very complex but it does sound condescending whether you are a Christian or not. I survive moment to moment. There is a time and place for everything including exploring the challenges God gives us and how we respond.

4. “What's the prognosis or is she going to die?” I’m not God. Perhaps I don't want to know or maybe I am still dealing with my emotions on this. But please don't keep asking this one.

5. “Is she meeting any milestones yet?” Every progression whether big or small is an achievement and it should not be defined by this overused word to define a child's abilities. We are all unique. How many tears have been shed over children not fitting into the 'norm'? Celebrate the small victories with me not the lack of milestones.

6. “Are you going to send her to a special school?” All options are open to me but just because she has a disability doesn’t mean she can’t go to a mainstream school. Why not rephrase it, what school is she going to attend?

7. “Why can't you do all the therapy yourselves?” I am not a super mom I don't know everything and I make many mistakes. Hindsight is my best friend but physically I can't do all the therapy myself I need the help of trained professionals.

8. “Did you know before she was born?” What does it matter? Another special needs mum asking is different as you are sharing a journey but she is here isn't she? That is your answer.

9. “What happened to her?” Nothing happened to her. She is perfect to me.

10. “Didn’t you think of a termination?” Defenses go up with this one. My choice and here I am.  We all have to make a choice we can live with and this is mine.

Tough questions hurt and challenge. It doesn’t mean they are wrong just need to be approached with care and caution. For a long time I was defensive because it hurt so much but responding in that way sets a bad example to my daughter. I smile and hold my tongue most of the time. Today, being rude seems to be ‘norm’, what happened to being polite and friendly to everyone? Perhaps, next time you meet a mum or even a dad with a child who has special needs be gentle as you don't know what their daily challenges are. Perhaps offer some encouragement and let them tell you their story when ready. Some questions come naturally to a friendship but instead of asking such targeted questions perhaps just talk about what is real and true now. Keep your curiosity at bay. Hold onto the future successes and help if you can. Remember having a disability isn't wrong it’s just a different type of normal.
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