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.

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.

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.

Choices

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? 

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  http://www.bookdepository.co.uk/Twinkle-Twinkle-Little-Star-Annie-Kubler/9781904550020
• Book - Sign & Singalong - Incey Wincey Spider by Annie Kibler http://www.bookdepository.co.uk/Itsy-Bitsy-Spider-Annie-Kubler/9781904550433
• Book - The Play School Rainbow Book
• Book - Rain Rain Go Away by Caroline Jayne Church                      http://www.bookdepository.co.uk/Rain-Rain-Go-Away-Caroline-Jayne-Church/9780545485425
• 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.

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.

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.

What to say!

Some life journey's are worth the climb to the top

I have been thinking of what I could say about where we are up too particularly in regards to my little bug, Faith. This is hard to talk about as it is something I am not happy about and want to just keep pushing through each second and each minute with the hope of a happy ended at some point. Avoidance!

My heart hurts when I say Faith has her NG tube back, has had for 6 weeks now. Why? Because she wasn't able to eat enough orally to sustain her weight and with so many UTI's it was a uphill battle. But in saying that I think, no I believe, she could have done it if the hospital had helped us more when we were last there in regards to other options. They pushed and pushed for a NG tube and even when Faith drunk the formula they wanted it wasn't enough. We pleaded and pleaded but they gave us no other option, they were not going to let us go home without one. I am sad, I am angry, I am grumpy but nothing changes the fact she has one and if I could, I would go back and ask for other options and help. Yes, she is gaining weight consistently now, but there are consequences. For example:

Faith no longer sleeps through the night (sleep, sleep what is that?).

She has tube feeds every two and half  to three hours (it was two hourly so not so bad now).

We can't go in the car by ourselves because she rubs her nose and then vomits and the tube is coming out her mouth.

No longer can we go out in the morning, the formula causes tummy pains, all our outings if we are able, are in the afternoon (this isn't a massive concern to doctors as she is gaining weight and they can't find any allergies. How I miss the blended diet!).

A vomit at least once per day - caused by rubbing her NG tube

this list goes on.....

Faith's life is harder than it was when we had the NG tube in last year. But the wonderful thing is she is still eating orally but not much as the tube aggravates her swallow. She is getting stronger and putting on weight.

This all leads to the next BIG life change, on 9th May, Faith will be having a bard button surgically inserted. It means no more NG tube and she can then eat as much as she wants orally and then we can top her up through her button. So that is good but I do really really wish we were given other options. I don't feel comfortable with it but no one seems to offer us anything else. There is no second opinions due to where we live and we already travel 3 hours, but with a NG tube it is even longer to get anyway. It's in God's hands!

Finding joy in the rain!

It's raining and raining today but among my longing to have a sunny day I am reminded how many blessings surround me. With the sun hiding its shine, it is dark enough to light some homemade candles and stop and watch the rain fall and my mind wanders. The leaves on the trees are preparing to fall as winter is coming and this year we have our own wood fire to sit around. Here are some pictures of the rain falling on my garden and I couldn't resist including the picture of the pink gerbra's that arrived with a friend to cheer our day. Blessings are everywhere!

Hospital Adventure Continues - Day 9 and home!

Just had to share this image!

I find people watching a interesting past time in hospital. One of my favorite encounters was when Faith and I were heading to the lift and as we went in 6 or so older looking ladies followed. They seemed to come from no where, at first as usual, my mind is elsewhere, but something drew me in. I gazed up and I didn't just see some older ladies seasoned with salt but angelic looking ladies and while they fussed over Faith and in the moment or so that followed I realised they were nuns, heading to the convent. They looked so peaceful, kind and genuinely content. Just as fast as it began it was over and the nuns left, sayings God bless the little one. I will never forget the peace and calm I experienced when I was around them. Something I longed for in my ever changing situation.

Highlights of our day was a visit from the pastoral care worker and last week he had invited us to a Lent service and  we said that we would go not realising today's was to be held in the adults hospital and tomorrow was the children's. We got confused with the days (as time floats away in hospital) but decided to attend none the less. So off the 3 of us went, yearning for some peace. Today Faith, hubby and I attended a Lent service, never have we before but felt spiritually low so decided to go. As we sat in this small chapel nestled among the chaotic hospital we listened quietly and for those minutes that past, peace filled our hearts and I had peace even if fleeting.

Somethings are meant to be and we are meant to be in a specific place at a appointed time (serendipity if you will) and today was one of those moments. The lady sitting behind us was an old colleague of hubby's. The lady's  tears flowed like a waterfall and I wanted to do was give her a big hug, I could see the hurt and weight of her burdens as I looked into her eyes. She said she had a 11 week old daughter who was suspected to have meningitis but didn't know whether it was viral or bacterial yet. For a brief moment I remembered the pain of having a relatively new born in hospital and the fear that took over all logic and reasoning. We parted ways but as we knew her pain we thought of how in some small way we could help as others have done for us. So we left a small gift for her and her little baby. The next day as we returned to our room after one of our many outings to escape the ward we found a note and gift. It said your prayers were answered as the little one is improving and it wasn't what they feared and they were heading home. And a few days later we were home too.

Day 7 - In Hospital - Anywhere but here

You know one of the things I find really hard when we are away, life goes on at home, I may not be there but when I do come home, time has passed. My friends keep having play dates, kids go to school, bills still arrive, time passes and I know life has to go on but it is still hard not to be present. For a period of time my life is confined to hospital grounds where there is no real night and day, it is defined into shifts, hoping for a nurse with understanding and compassion, these are the things that dictate the mood for the day, making it easier to cope or crash. It is people like the lady at the hospital cafe who provides polite conversation bringing familiarity to the day (particularly when she has know me since I was pregnant), the cleaner who is thoughtful when your daughter is sleeping and she is vacuuming the room. It is the social worker who comforts the ever falling tears and the pastoral care worker who offers a pray of comfort and strength. The moment I find comforting in a strange way,  is visiting the cafe in the maternity hospital, watching the babies and their families leave. They look so joyful and happy and I cannot lie in that I imagine myself and wonder what it is like to hold your baby moments after he/she is born or to have family visit but I see their joy and I escape for a while and Faith loves watching the babies and people too. It helps both of us.

Beside me a mother has a heart felt conversation with her daughter, I can't see them but I hear the tears trickle  down their faces, my heart hurts for their pain whatever it may be. In a week we have seen above 8 families come and go in our room and being in such quarters you hear things, things you sometimes don't want to hear and there is pain that is far deeper than physical pain and may not be able to be healed here. Sadness lingers in people's hearts here, we are all here for a reason whether we want to be or not. There are kids who come here regularly and know the routine,  their are newbies who will come and go and forget those they met and maybe should have learnt something from and lives traveled. Then there is us, who come from a regional area and are sometimes lost in this big place and are trodden on, hurt and feel lost ourselves, we feel we are failing and falling and there is no one to catch us but somehow someway, we keep pushing on through this real life night mare and come out the other side hoping that we find our normality again.

A roadblock, trying to pass it!

Well, I didn't think I would be writing this from hospital but I am and as much as I hope to wake up and find it is a dream I do not wake and it is real. We came to Brisbane for a sleep study and it was our first big trip out with Faith's oral feeding. She didn't eat well that day because she couldn't eat the way she usually did. So after a long night we made it through the sleep and we awaited the results. Morning hours passed and we got a phone call saying the respiratory doctors could see us early and we were thrilled the sooner we could go home. The doctor had a grim face and added no she doesn't need oxygen anymore. The excitement and joy of this news was lost as my heart hurt and mind felt like I was entering a dreamworld, but no, this was real he said he wasn't happy with her weight. He said things that hurt to my core. He wasn't happy with what we were feeding her, nothing really, then the words that threw us, she looks to thin and she needs to be admitted to hospital and there was NO CHOICE. So many emotions ran through my mind, he was asking questions, all I could hear was NG tube and I was saying no, no, no, NG tube. He didn't get the message so with heart felt tears streaming like water falls down my face I spoke as firm as I could and said no NG tube and said why. My husband was as shocked as I was and trying to understand what was happening. How was this happening, she is eating and yes we were happy for help to increase calories and volume but surely no admission, surely not. But sadly there was no choice. I immediately called the Social Worker and asked for her help.

I have coped pretty good I think until this dark day that comes close to the worst day of my life, horrible things were implied and I might add were later proved  WRONG with blood tests. The doctors were wrong but no apology came. Yes, our little one was dehydrated this day and she is extremely anxious about hospitals which made the whole thing harder for her. Most of that day I felt that my heart was twisted and pulled and stamped on and will try to delete the rest for the hurt that it brings.

5 days later we are still in hospital and we have accepted their help with formula and have been allowed to keep partial of her homemade food, need something real inside her. I do understand that the medical professionals are trying to help and want was is best for Faith but they had missed alot of factors or rather were ignoring them. We will get back to real food but for now we do need some help to get her weight up and there is more but I need to ponder some more on how to write it and explain how it all turned to a road less traveled.   

Go confidently in the direction of your dreams!

Inspire Bohemia: Inspirational Words

Go confidently in the direction of your dreams! Live the live you've imagined. As you simplify your life, the laws of the universe will be simpler! Henry David Thoreau.

I love this quote and I find it inspiring. Over the last few months I have been thinking about what I liked to do before Faith was born. What were my interests? What did I do with my time and what did I think about? I then thought back to my dreams and aspirations when I was younger and it came back to writing. I love to write and sometimes I don’t know what to write about. The counselor I see suggested the book called The Artist’s Way, a course in discovering and recovering your creative self. The back cover says that it dispels the "I’m not talented enough conditioning that holds many people back and helps them to unleash their inner artist". The book tackles self-doubts, self-criticism and worries about time, money and the support to pursue the creative dream. I found the book at the local library and started reading. What first caught my attention was how there were quotes written on the side of each page.

Wonderful quotes like:

Straightaway the ideas flow in upon me, directly from God. Johannes Brahms

It is the creative potential itself in human beings that is the image of God. Mary Daly

What lies behind us and what lies before us are tiny matters, compared to what lies within us. Ralph Waldo Emerson

Words are a form of action, capable of influencing change. Ingrid Bengis

So you see, imagination needs modeling – long inefficient, happy idling, dawdling and puttering. Brenda Ueland

I shut my eyes in order to see. Paul Gauguin

I love journals. I always have one around writing all sorts of things but I thought I'd start afresh recording what I hope to be a process of change and renewed inspiration and help. Each morning as the book suggests I write my morning pages, whatever pops into my head. I am finding it very therapeutic. There are weekly tasks to complete and it has looked at self-doubts and past criticisms.  I am finding it has already helped me heal from words I hadn't thought had affected me when they had. There is a good change and I like it, I feel it within, just letting my mind float a bit and get past all the unnecessary bits and being more free. It gives me the feeling that I am letting go of past hurts and believing in myself more. One of the tasks in it is to write out affirmations daily and that in itself is a very positive experience one that I am finding is helping me believe in myself more and that I can achieve anything. So I continue on my creative journey in The Artist’s Way but also in my university writing course in publishing, writing and editing. What an enthralling journey I am on and I am loving every minute of it.

Where we are at!

Time has been flying past and Faith is doing really well, she got over her last UTI after a long course of Nitrofurtoin. Her eating has increased dramatically and she is looking fatter, haven't weighed her yet but, the plan is to do that this week. Faith has more energy and is drinking more water too so that will keep her hydrated. We have increased the pure cranberry juice on the advice from the Nutritionist and she seems to like the taste now so that is really helpful. At last we are weaning Faith off her last daily medication, Keppra, it is going slowly than we originally anticipated but it going which is the main thing. By the end of March she will have no more daily medication. We have seem her more alert, saying more word sounds and interacting even more. We have also started taking Faith to swimming lessons again and had her first one of the year last week, she went all shy, it has been three months so she has probably forgotten how fun it can be. She was a cuddly koala who just wanted to watch, not play this time.

We have started back at physiotherapy and hope to be able to go weekly if we can raise the required funds. We can see so many benefits just after a few weeks. The first week we were given different leg stretches for Faith and encouraged to leave her leg wraps on for longer than we had been. So we put Faith's leg wraps on when she has her midday sleep and then for other periods during the day so around 3-4 hours in total. At our last visit, the physiotherapist could feel the tendons stretching that needed to be and said, "you have been doing the exercises". We took Faith's Squiggles standing frame along as she didn't seem that comfortable in it lately and that is because she has GROWN in length. So, we lengthened the Squiggles standing frame and she now looks so comfortable in it and we have been able to have her in it daily and Faith loves it.

Our big goal is to help Faith build up enough strength so that she can sit up and to get her to that stage we have to get her comfortable rolling side to side and practised in tummy time. The ipad is a great resource in motivating Faith to roll side to side, though I did find she likes to attempt to log into the iTunes store and archives my emails. LOL. We have managed quite easily I am happy to say to incorporate rolling and tummy time into our daily routine and with Faith being so well there has been lots of good opportunities. It is exciting seeing her strength develop and it is wonderful to have such a supportive and encouraging physiotherapist part of the team to help Faith grow and develop more. With her growing I think it is time to take the Stingray R82 pram with us next week to have it refitted as she hasn't found that very comfortable lately. Since the Squiggles standing frame needed resizing I assume the pram would too. Exciting times!

Make time for yourself!

As a mum it is hard to make time for yourself but at last I have decided I do need time to myself too so that I can have different topics to talk about with others but bring something back into my relationship with my husband too. By making time for me, I think I will be a better wife and mum as I will be able to have more focus and I am already feeling more organised. My head space though still jumbled is sorted into a pile of different jumbles. Making time for me gives my brain something else to think about and if Faith is having a bad day it also gives me something to look forward too and escape to, even if just for a few short minutes every now and then.

My first step was getting some exercise something that hasn't really existed for me for a long time, except for the occasional walk, I wanted something more so I have started swimming in the morning. There is a indoor pool not far from our house so I am only out for about 45minutes but those 45 minutes are precious and important. I only go during the week as it fits better to our routine but I love it. I have conversations with different people and when swimming I think of different things or nothing at all. Sometimes I get great ideas but most of the time I just like the repetition of up and down the pool. I have been going now for 5 weeks or so and my stamina is increasing and I can swim more laps. Apart from my swimmers falling apart and learning the hard way, why I should wear goggles - I couldn't see after three days of opening my eyes under the water, I just like looking around while I swim, but the cloud I saw for hours after ward and the stinging pain, goggles became a urgent requirement. Swimming has been a wonderful way to start the day.

Another way that I have found for me for something at home any time of the day or night, is to begin reading a book called the The Artist's Way - A 12 week course in discovering and recovering your creative self, sounds exciting, I'll keep you posted on my journey. So amidst the craziness of my life I will keep remembering to make time for myself too.

Making sense of the craziness!

Sometimes do you look back at the past week and say how on earth did I make it through? Well, last week was one of those weeks for one reason or another. Each day I felt like I couldn't make it through but I did and I am at the beginning of a new week full of anticipation and expectation of something better than the last week. So I wrote the below when I was feeling extremely low and for some reason since I was in the midst of the just keep swimming week I couldn't publish it. On top of everything last week I got the some sort of bug and have been quite unwell, maybe induced by stress, who knows. The last few days have been better, days that plod on instead of dread each moment forward. I still feel unwell but I don't feel as lost as I did.

Last week,
 
What do I want to say? There is so much but putting some thoughts into words sometimes eludes me, if only I could print my brain, it would be all the better. Today I was reading a blog about pre-toddlers and how they waddle around and their creative interpretations of the world. It also spoke of their transformation from baby to toddler and how amazing that is. It is amazing to watch a baby develop reaching the 'milestones', learning to crawl, exploring their world and climbing on everything. Sounds so exciting. As I looked for activities for my dear one and I find one here and there I get excited about showing Faith new things and activities. I feel like I don't get to show her that much sometimes with all the sickness and the constant feeding and teaching about food and the physiotherapy. I want to show her things, how much fun she can have. Help her learn to touch and pick things up. I'd like to feel like I have achieved something in a day with Faith so I now have a chart for the week outlining a daily activity, sensory, building, touch, quiet activities, lots of fun things and I aim for one fun planned activity a day at least. I am excited about having a plan so that when I am a bit overloaded I can just read the plan. So I am just trying to find the activities where I can see Faith explore, learn and develop. She is limited by not being able to sit up or crawl so I am really trying to be her hands, her legs but it is hard and I do find it tricky.

Just for a moment think how your toddler plays, running or crawling around, discovering new things. How does it feel to you? But to me, I see what I at this point cannot have and wonder will it ever be, what does it feel like, but I must hope that it will be, and for now this is my task. I don't know what it is like to have a toddler though I have one, a very special one whom I love dearly, I am just trying to make sense of my world and what it is and what it is not, but I am not looking for pity I am just trying to make sense of this craziness and this path I am on! Of course there is joy and that's what I must hold onto.

Pets as Therapy - Guinea Pigs

When I say pets as therapy, what is the animal you think of? The first animal that comes to mind for me, is a dog - loyal, faithful, man and woman's best friend but to me it is my 7 girl guinea pigs. They talk to me, they beg for food, they announce themselves when I am in the kitchen, hehehe, I want food too, feed me feed me. My piggies all have different personalities and they are all unique. Not only do they mow my back lawn, they eat my veggie scraps (and yes I spoil them with lots of other yummy food from the garden and the store), they welcome me when I return home, they like to party at night so when I am up with Faith they are there wandering around in their house ready for chat and a veggie. They are clean and I can teach them tricks so to me I think guinea pigs are great pets as therapy. 

Faith learnt to squeak from hearing the piggies squeak and I must admit I thought her first word would have been pig pig! lol Faith watches them pop corn in the back yard, run around eating and munching all day and then sees them resting in their indoor house. We incorporate the piggies into our lives and when I pat them they gurgle in pleasure (like a cat purring) and I love that I can have them around for Faith to enjoy and learn about having and caring for a pet.

Keppra Weaning

For so long we have seen Faith on so much unnecessary medication and over the last year we have been weaning her off all these nasties. There was really not good reasons to put her on these medications, I think it was because the doctor's didn't know what else to do so they comfort the parents by giving more medications with the hope it will help the child but make the parents feel like they are doing something. Faith is down to one medication to get off and I must admit it yet again it caught me off guard of how it is affecting her. With each medication wean doing different things to her. We have started really slow, like with all the other medications, but Keppra is proving a little different.

For the last several night's Faith hasn't been sleeping very well and we have put this down to being on antibiotics and having a infection but it still seemed a little different than before as she didn't sleep much at all. She wasn't even sleeping during the day which is really unusual. What was causing this? Was she getting rid off her very valued day time sleep, surely not yet, please no. But after some research on the Internet we read several stories about kids being unable to sleep, some not sleeping at all for days. Hyperactivity and increased seizures can happen too. Thankfully Faith hasn't had any seizures of any kind but she never really had any anyway. Definitely seeing the hyperactivity, but that is ok as Faith isn't that active anyway and it has been more a good thing than a bad with her. 

So we decided to slow Faith's keppra weaning right down. It is so hard sometimes to know what is going on with Faith. She thankfully had a couple of sleeps today which is unusual so it is good we are stabilizing her wean. Faith also has a UTI again at the moment so she is on nitrofurtoin and that upsets her tummy, so I think that is contributing too. There are some wonderful positives, she is making more sounds with her babbling and trying to communicate more, she is attempting to reach for objects more than before and doing lots of copying. Amongst some dark clouds is some beautiful specks of sun of what is to come.

Resources for becoming NG tube free - Cups and Spoons

It took us so long to get together all the different resources we used to help get Faith off her NG tube and to keep her from going back to it. We took her NG tube out on the 29th November 2012 and below is some cups, spoons and plates that is helping us in our journey of staying NG tube free. We have a amazing speech pathologist who supports us and provides us with so many of our resources. She is such a blessing to us. We have modified the spouts on most of the sippy cups and removed the valves so she doesn't have to suck as she isn't able to do that yet. Her favorite for a long time was the NUK cups in different colours, yellow, blue and green. We are still struggling to get Faith to eat from a spoon but we are working on it. She used a spoon for the first few days after we took her NG tube out and moved onto the sippy cups maybe because the spoon used to much energy and drinking the blend allowed her to get more energy and not use as much to do so.

A Down Day!

I have been sitting here a while, thinking about the best way to describe my day and how I feel. Today is my down day. Faith has a UTI again, the 3rd one in not many weeks. My heart breaks to see her sad and sick. Of course we treat it with antibiotics again and they in time make her feel sick too but she is tough and we all will get through it again. I received a text from a dear friend and she encourages me to keep going. What a blessing to have such friends! 

Here is the lyrics to one of my favorite songs at the moment.

No Other Name by Emu Music
There is no other name
In heaven can be found
Through whom we are redeemed
Through whom your grace abounds
No other name can save
But Jesus Christ our Lord

Chorus
My joy in sorrow’s tears
My strength to cast out fears
No other name but Jesus, Jesus
My hope in darkest night
My broken soul’s delight
No other name but Jesus, Jesus

2. There is no victory
But Jesus crucified
No other cure for sin
But that our Saviour died
No other hope we have
But that he rose again

3. No other throne endures
No other song remains
But ‘Worthy is the Lamb
Who was for sinners slain’
When every knee shall bow
And tongue confess you are Lord,
You are Lord

Resouces helping us with feeding - music and books

Justine Clarke's Website

I thought I'd share some of the resources that we have found a real blessing on our becoming tube free journey. Firstly, music and books.

To make eating fun we made a list of music that was about food, as Faith loves music. I got them from the itunes store.

Watermelon - Justine Clarke

My Food is Made from Sunshine - Jay Mankita

Mrs Knife and Mrs Fork - Justine Clarke

Jelly Jelly Jelly - Justine Clarke

Hot Potato - The Wiggles

God Made Food - Karyn Henley

Fruit Salad - The Wiggles

Food Food Food (Oh, how I love my food) - The Wiggles

I'm So Hungry - Playschool

Food Poem - Signing Up Presents Sign-along-sings

Food Gives Energy to Me and You - The Body Rocks

The Food Trying Song - Words that Rhyme with Orange - Ross King

Hey Food - Sesame St - Sesame Rd Vol. 2

Banananana - Surfer Jeff - The Wiggles

Mango Walk - Surfer Jeff - The Wiggles

I love Oranges - Surfer Jeff - The Wiggles

Let's have a barbie on the beach - The Wiggles

Let's make some rosy tea - Wiggle Bay - the Wiggles

Polly put the kettle on - Racing to the Rainbow - The Wiggles

Wash your hands - Let's Eat - The Wiggles

Friday is fish day - Let's Eat - The Wiggles

That is what you call digestion - Let's Eat - The Wiggles

Clean your teeth - Let's Eat - The Wiggles

Cook Captain Cook - Let's Eat - The Wiggles

To Have a Tea Party - Getting Strong

Vegetable Soup - Whoo hoo Wiggly 

Gulp Gulp - Woo hoo Wiggle

Teddy's bears picnic

Ch...Ch...Ch... The toothbrush song - Playschool

Singing in the Kitchen - Oomba Baroomba Playschool
 
Books about food

Available from The Book Depository

Food - Published by The Book Company - ISBN 978-1-74202-419-6

My Very First Book of Food by Eric Carle - ISBN - 978-0-399-24747-7

The Very Hungry Caterpillar by Eric Carle - ISBN- 0-399-21301-5

Spot Bakes a Cake - by Eric Hill - ISBN- 978-0-14240-329-7

My Food - A First Word Picture Book - A Campbell Big Board Book - ISBN - 0-333-68363-3

Out and About - At the Supermarket - ISBN - 0-7105-0418-7

 Adam's Apple by Richard and Marcia Vaughan - ISBN - 0-86788-194-1

Available from The Book Depository

How did that get in my lunchbox? The Story of Food by Chris Butterworth - ISBN - 
978-0-7636-5005-6

The Teddy's Bears Picnic by Jimmy Kennedy - ISBN - 0-216-92270-4

Possum Magic - by Mem Fox - ISBN - 978-0-152-63224-3

A Catch Up - Tube Free

It has been a while since I blogged, I don't usually leave it this long. The reason being is life has been quite crazy for us. The wonderful aspect is Faith is still tube free and is talking more (new sounds, that I hope will turn into words soon). It is a hard road feeding Faith, she still won't take food off a spoon or through a sippy cup, she insists it has to be through a syringe. It is much better of course than through a tube but hard work as she still doesn't eat a huge amount. I have to keep reminding myself that it is thought that tube feed kids are 30% overfed so I need to remember that. I always thought Faith was overfed from the moment she was born but as she was in NICU and I didn't get a voice in that regard, I just had to trust they knew best.

I can't believe it has been only just over 4 weeks, feels like months and months. Faith no longer looks like she is losing weight which is a wonderful wonderful blessing. Her tummy is filling out very slowly. Still haven't been brave enough to weigh her as by doing so it isn't going to change anything but stress me so I will wait a bit longer. Faith currently has a UTI so she has been feeling rather unwell and it has affected her eating but she isn't vomiting and that is a big blessing. The weather here has been so hot we haven't managed to get out, hiding away in our air conditioned comfort. Don't want to take a chance with Faith getting dehydrated. I know Faith would love to get out and so would I.

What is Faith eating? She is eating her blended diet with a few supplements added and some extra fruit puree to give it a yummy taste. She seems quite happy with it. She isn't that keen on tasting new foods but we are still trying. I really hope she will soon try some other yummy food so she isn't always eating the same thing. We are treating her UTI with antibiotics and starting doing in and out catheters just while she has the infection. If we do it all the time it increases her infection rate. Faith isn't eating much when we go out so that is a area we need to work on too. But for the moment we will just keep concentrating on eating and having fun.

2012 - In Review

What a year it has been! There has been twists and turns, down roads and paths we hadn't intended but we have God willing made it through each second, minute and hour that lead into days and months. There were times when I felt I might just sink but here I am still going.

Some highlights of the year!

Faith hasn't been in hospital for over 13 months

Faith can now go without oxygen when she is awake. Yay!

Faith got her sting ray R82 pram and the squiggles standing frame

Another great achievement is Faith has halved the medication she takes and will soon be on none.
 
We sold our high set house and bought a low set house, now we can easily play outside and go out with ease. 

We also get to go to more social outings and play dates and that is WONDERFUL!

We have met some new friends and enjoyed spending time with old ones :)

The biggest news being that Faith has no NG tube and is eating orally, though still having struggles with eating, but we are making small steps forward and that is the most important thing. We have so many things to be grateful for and so many blessings. I wonder what great and wonderful things will be in 2013!