Sunday, 22 September 2013

Faith's first painting session

Faith is recovering from her UTI and becoming brighter every day. She is ready to bounce and play again.
Today was our first occupational therapy session where Faith, the OT and I painted. Faith was apprehensive at first. She did eventually slip her little fingers into the paint and then into her hair. She is still reluctant for anyone to touch her hands but is doing so much better. She allowed the OT to use her hands to hold the paint dot markers and draw and squibble. It was so nice. Something normal and fun for all.

Tuesday, 17 September 2013

Struggling with life...but as always there is a light

I wrote this three days ago but our internet was not working and I forgot to post it. 

Today has been a day I’d like to forget or even better start again. Faith has a UTI...again. She does not have a temperature or look unwell she just feels really sick in the tummy. Her tube feeds seem to equal vomit but we are getting some food into her throughout the day. I read a post at “What do you do dear?” blog and as I read it tears streamed down my face. She wrote of her struggle with ‘forever.’ I could really understand how she was feeling that day. Her son will have Spina Bifida forever. Just like Faith will have it forever. It is a subject close to my heart as lately I have been struggling with Faith having Spina Bifida forever. Right now, when I am in the thick of really bad days and tears seem to be on speed dial I wonder will the good days come again? And yes, they do appear again and I am grateful for their much anticipated arrival.

This morning was a horrible morning. Faith was unwell and I was struggling to manage. I wanted to hide but I could not. I had to face it. Making it through the day was a challenge. When we sat her in her stingray pram and took her for a stroll in the garden she smiled, she giggled. She reached out and touched the washing blowing the warm spring breeze and she touched the leaves on the hedge. She took it all in. These are the moments I hold onto when I think how can I make it through another minute? It is not my strength but God’s alone sustaining me.

Wednesday, 28 August 2013

Here we go...again

Mutton Bird Island - Hubby, Faith and I climbed to the top.
Faith ridding in her pram! Nothing is impossible!
It is amazing how life can change so quickly in a matter of hours. 

So, drum roll... we decided to give Faith some blended food through her button. It was tough, in that we wanted to do the right thing. The right thing for Faith. I thinned out Faith's blend and hubby and I, prayed for wisdom, strength and the blended food went easily into her button. It was ok, it is basically a juice. We are not removing formula feeds at this stage. We just will give her a bit of blend into her button before she has her formula and she hasn't vomited since. We were always giving her juices into her button, this is just a different type of juice. She had over a hundred mls this afternoon and she is already more settled, more smiles more giggles and I am sure more sounds of words. Maybe I am imaging it. But, she isn't sweating as much and looks happier. We shall see how we go tonight and over the coming days. I am hopeful this will turn a corner not just for Faith but her eating food again. 

We had her sitting outside this afternoon and she was leaning her head towards the small bowls of water she was playing with and trying to drink them. All positive signs I think. What a sweet little girl she is and even with challenging times she brings us laughs and happiness.

Tuesday, 27 August 2013


It has been such a long time since I posted. The only real reason being, life is crazy busy but what has been happening?

Faith turned the big three! So exciting!

We are loving living in a low set house, nearly been here a year now. We can go much more easily and we see nature in action. The blue wrens and Willy Wagtails are a source of delight for all of us.

Faith has been really well and our trips to Brisbane are less frequent due to me saying "do we really need to visit so regularly".

We have been on our first family holiday and we explored Coffs Harbour. Loved it. I think I relaxed for the first time since Faith was born. I am not going to lose that feeling. I must keep it. So we can all survive. I got to have a ride in a helicopter as a birthday present. What a fabulous adventure. Faith turned a corner and now happily sits in a swing and loves being pushed in it. Must get one at home.

But, today I find myself at a cross roads. Faith is getting fatter, nearly hit the 10 kgs or maybe she has (I haven't weighed her in ages.). But our biggest problem which isn't a new one but I thought I would never have to say it. Faith is vomiting and vomiting. It's the formula. She struggles to eat anything again sadly. All her nourishment goes through her button and she is gaining weight but the vomiting usually gets worse and worse the longer she is on formula. She isn't sleeping very well, hasn't been since the reduction of food. So we are all sleep deprived. Some more than others.

What do we do? I am at a loss. I have so much information at my finger tips but after such a long struggle with feeding I don't know where or how to start any more. Fear is a issue. Failure a biggie. 

I know that if Faith can eat, the vomiting will greatly reduce or even disappear. I know that if I give a blended diet into her button the vomiting will decrease and she will sleep through the night. So, then, why don't I give her a blended diet into her button? Because I have no support to do it. I am on my own. If I blocked her tube, I hate to imagine what the hospital would say or even how they would react. I feel like I am on the edge with them. But this is the best option for my darling. I posted on the Facebook forum Blenderized Food for Tubies and apparently the size of Faith's tube isn't an issue and most do it on smaller. So, should I try? That is the question. I am at the end of myself, the 24 cloth nappies that are used to catch the vomit are continuingly vomited on, washing, dried on the line and reused. None of us, more so Faith, can go on with this vomit. What is best and what is right? 

Wednesday, 10 July 2013

Weather Week

This week it is weather week so in her bag of goodies we have:

  • a rainbow xylophone
  • a rainbow winkle
  • different coloured building blocks
  • Book - Sign & Singalong - Twinkle Twinklle Little Star by Annie Kubler
  • Book - Sign & Singalong - Incey Wincey Spider by Annie Kibler
  • Book - The Play School Rainbow Book
  • Book - Rain Rain Go Away by Caroline Jayne Church            
  • Lamaze - musical flowers.
  • We talked about rain and how it helps plants grow.
  • We talked about the sun and how it helps the plants grow too.
  • I also planned craft activities for the week - making clouds, sun and rainbow - Faith loved this, she touched, giggled and loved this activity. So pleased. All I used was A4 card stock and strips of coloured paper, then glued on to the cotton wool balls. Lots of fun.
  • Windcatcher - An old tin, covered in teddy bear material that Faith picked and strips of ribbon, perfect to catch the breeze
  • Umbrellas and rain drops - I asked Faith about rain, where does rain come from? Do you like rain? what does rain do? We sing songs about the rain. I just used coloured pipe cleaners, cup cake liners, coloured markers and coloured paper. Quick and easier.
Pinterest has so many great ideas and a good place to find inspiration. We only used materials, toys and books we have at home and it is amazing how much we have ready to use. Faith is exploring more and I love seeing her slowly progress.

Saturday, 6 July 2013

All things green week!

It has been so long since I have posted a blog. I keep thinking about it and it just doesn't happen. I have just been managing to get myself through each minute and second but I wanted to share some fun activities we have been doing.

We had a trip to Brisbane last week, hubby had a course to attend, so we kept him company exploring Brisbane city while he was at the course. While we were away we played and learned about all things green.

With so much going on it is sometimes hard to know what fun things to do with Faith. Faith's speech pathologist suggested we make up a bag of her toys for each week and pick a theme. Then, we can help her speech develop and learn something new each week.

In Faith's week of green fun activities we had:

  • Book - Spot Bakes a Cake (it has a lovely green cover) by Eric Hill
  • Book - The Very Hungry Caterpillar by Eric Carle   
  • Book - Sign & Singalong - Teddy's Bear, Teddy by Annie Kubler
  • Book - Frogtastic!
  • The Ants go Marching 
  • A green frog puppet
  • Three bunnies in a green basket
  • Green balls
  • Green lyra material
  • Green cars
  • Green pretend fruit
  • We include flash cards too.
The plan was to do some craft but it was a bit hard to do that away. Will do that with our next themed week. We did look at what green things we could find in the city.

We are finding this technique is helping Faith's speech and learning. Along with expanding our skills in key word sign we hope we will be able to better understand Faith's needs and wants. She understands so much we just need to keep those small steps forward.

Monday, 3 June 2013

The Angel Guiding

Tonight I was reading over my past journal entries for the last few months. I went through with a pink marker to highlight insightful writings and a yellow marker to highlight aspects that needed action. I read with great trepidation, hoping that the words I read would not hurt too much or make me crumble. It was hard and it gave me the perspective that I am actually happier now than I was. 

A lot of the journal was written through the time Faith had no NG tube and then when the NG tube returned. So it was painful to read at times of what felt like failure and hurt was in the words I wrote. Even to this minute I still feel some failure with Faith's feeding and the return of the NG tube. Yes, there are many things I would have done differently. Regret. 

Then I am here today, Faith has a gastronomy button and the path that led me here is not one I wish to relive or even I am happy with. I am happier now than I was, in that Faith is happier as she has no NG tube. She doesn't throw up as much and she can get any extra nutrients via her bard button. We struggle with her eating but as always we will work towards more oral eating. If she is unwell she can get additional medications through her button. I didn't expect so many things with the bard button and I am not used to it and I am hoping it will become easier because right now when I look at her button all I see is the wound breaking down on her back like it did when she was born. I just can't get rid of that image. But overall, Faith is so much better without the NG tube (as we all know) and the button is there to help for now. I must adapt like I have to everything else I shouldn't have had too. But I can only try and find peace and happiness in my journey. Faith is my delight despite the hard times.

But as I continued reading my journal I realised that in comparison to then I am more happy now. I have changed in some way, my writing has changed, writing has given me something more something I lacked before, the way I read has changed. Life has changed. I am happier. 

And this is the story I had forgotten I wrote.

I was thinking about my childhood room, lemon coloured walls. I remember coming home from school and finding lemon coloured walls. For some reason I thought I had wanted pink but was happy with the lemon. There were lace curtains on the front and side windows that looked out onto the main street of my small home town. I had a fancy light shade hanging from the ceiling, very lacy and pink. A second hand treasure from a friend. So in my room sat my pine single bed, a pine bedside table with a lamp and tape player (yes, a tape player, I am ancient, lol). But the most important object in the room was the angel picture that hang above my bed. The frame was white, chipped and touching it the wrong way would nearly make it fall apart. I can’t remember it not being above my bed when I slept.  There is a dark image yet with light picture of a dark and stormy night, a boy and a girl are crossing a bridge that has seen better years with many holes in the wood and covered in moss. Fear and loss are in their eyes. But little do they know there is an angel surrounding them, protecting them. They just need to keep their faith taking it a step at a time. I’ve always had my angel picture hanging above my bed. Now, I am all grown up it has been reframed in a moss green colour and has glass over it, to protect it from harm and it hangs in my little girl's room. A little something of me in her room that will hopefully give her the hope it gave me in life’s trials.