A Week in Review

It has been just over a week since we launched our Pozible project. We have experienced many blessings with so many of you reaching out with your support through sharing our story and also giving to our project. It has been truly joyful reading your comments on the Pozible project page. It has inspired me to continue on reaching out to media outlets, newspapers, magazines, and anyone who can help us spread the message about Eleanor's story. If you have an idea or contact we would love to hear from you as we haven't reached our target yet. AND if we don't reach our target we won't receive any money. So our work isn't done yet. 

After several media interview's the local newspaper, The Northern Rivers Echo gave Eleanor the front page. The Northern Star also published her story. We love being able to share Eleanor's story in the hope it might bless you too.   

Here is the link to the stories in case you want to read and share:

The Northern Rivers Echo

The Northern Star

The Daily Mail

I have learned many lessons in the past week. I have grown in many ways. I have become stronger and been blessed by making new friends and finding support in many places. It is comforting when a writers group rally around you providing encouragement and support when I struggled at first with my first negative comments on my story. My story definitely engaged with the reader and provoked opinions, personal, indifferent and uplifting.Instead of recoiling and hiding from the nasties it empowered me to show the good and the blessing in Eleanor's story. 

Yes, we are asking for people to help us reach our gigantic goal of raising $15,000 but we also want to share Eleanor's story. She is strong and she is capable. She is accepting and never judges well unless you stop wearing your hat and sunglasses. She might talk at you until you put them back on. Her difference might be hard for other's to understand, but she shines goodness and happiness into so many lives. She is a blessing to me and I just want to share her bit of twinkle with you all.

 Here is the story I wrote for Mamamia and The Motherish. 

Any ideas on how to spread Eleanor's message please comment below or let's be friends on Facebook :-) or on Pozible http://www.pozible.com/project/200432

Eleanor’s story: The beautiful little girl who hasn’t eaten in two years

Eleanor is a gift. But she needs your help.

I gaze into her big blue eyes, long dark eyelashes and golden curls. I have learned every moment is a gift. Every milestone a celebration no matter how big or small. Sometimes it is a step forward and then a few back — but as long as we keep moving forward with good days it is okay.

When I heard my daughter sing for the first time, learn a new sound or word it is a delight to my ears. I never thought I would see her so happy and growing, but it wasn’t always this way. There is still a long road to take, but small steps are all it takes.

To read more of my story follow the link 
 http://www.mamamia.com.au/parenting/raising-a-child-with-a-disability/#17o1cOzIDMi3EILJ.99

Crowdfunding - Check us out on Pozible

I wanted to share that we have launched a crowdfunding project to raise the funds needed to take our darling little lady to the feeding clinic in Adelaide.

If you are able we would love your support through sharing our project.

Our aim is to raise $15,000 in the sixty days the crowdfunding allows.

Here is the link

http://www.pozible.com/project/200432

How will the money be used?

Hospital stay costs $1100 per night for six night's $6,600
Feeding Program Fee $3,500
Information about the program: Speech Pathologists, Dietitians, Occupational Therapists, Parent-Child therapist and Paediatrician provide extensive and personalised therapy to holistically and successfully wean children from tube dependency. The therapists are experienced at addressing the many issues and concerns which arise around the mealtime environment and a child’s behavioural response to learning to eat orally. The intensive week is the final stage of the weaning journey which often takes place over many months prior and culminates in the final inpatient component (Lively Eaters Feeding Service).
Specialists and Therapists costs
Travel from Northern NSW to Adelaide
Accommodation en route and up to ten days accommodation in Adelaide
Food and fuel for trip
Any remaining money will be used for ongoing support after program or put towards physiotherapy or speech therapy 
Estimate total cost $15,000

Here is the link

http://www.pozible.com/project/200432

Mind a Whirling

My mind has been working over time the last week. My thoughts went a little out of control and with a bit of less sleep I let them take hold. I have struggled at times to process everything that was happening around me. There were tears, some laughter and a crazy chat with an insurance guy (that made me laugh and distracted me) but also some serious thoughts.

I thought asking to have respite care at home was wrong.
I thought it made me a failure as a mother.
I thought I shouldn't need that extra help as I should be able to cope and manage on my own.
I thought I was doing ok.
I thought the tears that daily flowed were ok.
I thought I would feel uncomfortable.
I thought I could do it all.
I wanted to do it all.
I was wrong.

But as the day drew closer a realization that I was starting to become a little excited about some extra help. A little excited because for three hours, (twice a week for only six weeks) Faith would have a companion to read stories to her, do craft (she asks to do craft quite regularly during the day), be her hands to learn, grab, grow, explore and spend time talking to her. At first she was shy, but a walk around the neighborhood and some bee craft later, Faith made a friend. From then on Faith would tell me her companion was there for her and I shouldn't talk to her too much. 

But, there is nothing like a stroll in the sunshine to clear the mind, soak up the beautiful Spring weather and just have some quiet peaceful moments. Days might be hard and many battles to fight and compromise on but there is many blessings. The only exception that, is magpie swooping season and we narrowly avoided a magpie attack. The man walking towards us with a stick above his head was a warning for us to take another route. His zig zag direction to confuse the magpie was not entirely working as it flew low and straight at him. But then there were tears as that was the direction Faith wanted to go and we didn't want to risk the wrath of the magpie.

Today, I realised the blessing of receiving some extra help and support. I didn't realize how much I needed that support but sadly in six weeks it will end (no more funding). But we are blessed to have six weeks of a companion for Faith. An extra pair of hands allowed me not to worry about Faith when I was making my numerous phone calls and completing my piles of paper work. Or perhaps I'd forget it all and play with the little man while his sister was distracted. It was such a relief to have some support during the day.

Flash Back Friday

Flashback Friday to the day our little girl was born. Oh, the memories.

A new life is born

She couldn't breathe on her own. She had to have a tube down her throat to help her breathe. My husband went to be with our little one and hold her hand. She grasped his finger. It would be many years until she could grasp a finger like that again. 

We named her Faith because it was faith that sustained us through my pregnancy and faith that will keep us going too. I wish I could have been there too. They put a little hat on her head which I never saw again. I just have a photo of it. The anesthetist's assistant was madly taking pictures for us so we would be able to remember the day. Those photos are a great treasure, with such mixed emotions. Click here to continue reading

With Thanks to The Board Meeting

Small steps is all it takes and every one helps build the foundations for the future. We received a grant for Faith to receive three months intensive speech and feeding therapy. This therapy will not only help in her improvement in speech but will help us build skills in feeding (with the support of the feeding clinic in Adelaide) that will prepare her for the feeding program later in the year or early next year. 

I dare to dream that this time next year she will be eating and progressing even further with her eating and speech. I know she will as she just keeps improving. Our speech and feeding therapy afternoons are filled with afternoon tea (trying not to eat too much, though tempting), bubbles, learning to blow and suck, silly songs, learning to drink from a squeezy bottle and learning that food is a friend and not a foe. 

Thank you to The Board Meeting for assisting us in building the skills needed to progress to the next step in Faith learning to eat!

Building the groundwork to eat again!

As I write this blog post I want to be honest with you about the daily struggle and challenge it is having a child that is tube feed. 

But there is hope, there is always hope. 

At last we have started a program with Lively Eaters in Adelaide to build the foundations for our little lady to learn to eat. 

It isn't going to be easy. There will be many challenges and road blocks but it is start. It is hope. It is a beginning of a journey Faith is ready for. 

Hope that her days are not filled with vomit and being fed through a tube. But days that can be enjoyed with tastes and textures and experiencing the wonderful social experience of eating. 

I take eating for granted. It is so easy for me but for Faith, it isn't. She has an oral aversion and no longer understands or knows how to eat. There are many reasons this has happened and contributed to this but dwelling on them isn't going to fix the problem. My thoughts have lingered too long on what ifs, we now need to look at solutions and steps forward not back. Looking to the future. So with the great invention of Skype we have begun. Small steps is all it takes and it easier than I thought to just start.

After several years of tube feeds, bad habits and survivals habits emerged and a few simple structural changes has seen such a change in Faith already. Not just in food but in her. First, no more iPad, TV or play during tube feeds. Meal times, as they are now called, are at the dining table and we all sit together to have some food. Our little man is a perfect meal time pal for Faith with his exploration for food, let's get messy approach and love of food. He is always offering or stuffing it in her face. Faith allows him to do this but not us. 

Meal times now have a piggy timer, so Faith understands when meal times begin and when it ends. We sing grace before we start, start the pig timer ( fifteen minutes to start with) and all tube feeds are done out of sight so she can't see them and only sees food. She will have a sense by seeing food and becoming full instead of seeing her tube and becoming full. 

There has been tears, tantrums, sobbing, anger of frustration but overall Faith has had fun. She has even started touching some food. She knows coming to meal time there is no expectation at this stage on her to eat orally. 

Practice and being consistent are the key.