Friday, 24 August 2012

Yes, it does hurt at times!

"You never know how strong you are until being strong is the only choice you have." -Unknown

I found this quote the other day and I loved it, it just summed it up nicely. The last several months our life situation has been picking up, Faith is growing and we have less vomiting, thanks to the blended diet, our house has sold and some equipment we have been waiting on has arrived. Faith is making wonderful small steps in a variety of areas and we are so blessed. Such wonderful positive news! But amidst good things sometimes feelings and emotions tend to catch up on me usually when I least expect it. As I have talked before I had a plan about how many kids how far apart that type of thing and though Faith is an amazing blessing and enriches our lives every day, we have made new plans and new dreams.  Life is precious and new life is something beautiful and when I see my friends who I was pregnant with at the same time having more children and of course they face challenges to but I must admit sometimes I do feel left behind. When I am more tired than usual and I have a bad day and I hear there most amazing news, I feel sad, because I wanted it too and I know my time will come too but it still isn't easy. 

When I got pregnant with Faith I was then included into the 'baby club' those who had babies were excited cause I was the same as them but when we came home from hospital and with Faith having special needs though I was very welcome in that 'baby club' I wasn't really included and didn't fit in. That is just the way it is and yes it did hurt for a while not being included and being forgotten but I have moved on and we have our own lives and we have lots of fun. I don't mean to sound harsh but at times it isn't easy and some people do tend to forget how hard it is. I had someone the other day ask me if I was using Faith as an excuse not to come to events and stuff and that is sooooo not true, it is just lack of understanding on that persons part and I thought they understood more than others and I was wrong. So yes it hurts.

I am learning how to handle somewhat harsh comments and not to compare myself to others and be completely content with my situation and it is hard at times but I wouldn't change it as it is my life! It is just like the poem, Welcome to Holland (By Emily Perl Kingsley)
And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And some of that pain will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland!   

For me I chose to rejoice in my life, I love my husband and my little daughter and I am happy to be here!

Tuesday, 21 August 2012

Faith's Approach to Feeding - 1st Session at Home!

Our first session for Faith's approach to feeding was with the speech pathologist and she showed us and gave us all the necessary information to run the program at home and we catch up once a week either via facetime or telephone.  We had planned to have a go last weekend but we all caught a bug and it got put off.  At last yesterday, I spent the morning organizing the 14 foods, took me a while and then I printed off our session goals, food hierarchy, food awareness and evaluation sheets. We had our food in separate labeled clear containers, white plates, white napkins and we were ready. To give you an idea of how it works,  
  • Goals are made
  • Sensory preparation to ensure Faith is in the best sensory space
  • Transition from sensory preparation to table
  • Everyone at the table
  • Blow bubbles
  • learning about hygiene
  • Feeding - slowly going through all the foods, smelling them, playing with them, we are not asking Faith to eat the food at this stage we are looking for tolerance and acceptance of the food. Food is friend not foe. Lots of positive reinforcement for Faith.
  • Clean up routine
  • Transition from table to next activity
  • Review of session etc.
There is lots more in the session but that is just to give you an idea. The session went so well. We sword fighted, decorated, squished, squashed, mashed and made hats with the food. We didn't make a fuss, we talked to Faith, placed food on her plate and showed her how to play with it. Half way through she gagged a bit and then picked up and by the end poke food and put her hand on the strawberry. She hasn't touched food by choice since her food aversion developed so that is very exciting. It is alot of hard work preparing but she is so much further along with food now and the effort and time is definitely paying off. We have written our notes and look forward to our next session in a week.

Sunday, 19 August 2012

And it arrived....the Squiggles Standing Frame

Drum roll......Faith's standing frame arrived, I wasn't sure we would get there but we did again...

When we were first mentioned too that Faith would need a standing frame and it was another thing we needed to trial and experiment with different ones I was really excited not like when we first told that we should get a special pram. A pram that had support, at that suggestion I was shocked, I thought no we won't need a pram like that as Faith is going to be strong enough not to need those supports. I was scared, I was scared for Faith and what the physio was meaning, (thought bubbles in my head, wheel chair, unhappiness, unknown) was this how it was going to be?  I was scared that the pram would scream 'disability' so I was not really into the idea, but it has been some months since we got the stingray R82 pram, nearly a year since it was first mentioned and I think the Stingray R82 pram is perfect for Faith. It is not only a funky looking pram but Faith enjoys being in it and all the attachments for support are removable for when she gets stronger and when we don't need them. It has a play tray and she sits up in it and plays and she can follow me around the house and it puts her at the level of people sitting so she feels included. Lying on the floor makes her feel threatened I think, understandably. So when the standing frame was suggested, I was excited, I thought, Faith can stand up, she can see the world from a different view point, it is another step in helping her develop and get stronger. It is amazing how I have become immune to equipment I once thought scary and daunting but now I see it as a way forward. It is now part of our life.

We were first told that the standing frame wasn't covered by the NSW government so it meant we had to raise the thousands of dollars needed privately. Wow! Where do we start, what a huge task, I needed direction on how to get started. I met with a lovely fellow from the Northcott Society who now visits every few weeks to see how we are going and if there is anything he can help with. A great blessing! I wrote a letter and he gave me advice on additional things to include, I also included a letter from Faith with photos so organizations and businesses could see what a beautiful and blessed little girl Faith is. I printed out information on Faith's conditions and support letters from a variety of therapists and various doctors. A mountain of paper later, my fundraising packs were ready to be sent out. Within 5 days I got our first donation and that was just so exciting and encouraging, we applied for a couple of grants and were successful but we will still short, I sent out more fundraising packs and more donations came in and we were still short but out of the blue our church family supplied the remainder and we were there. 

Our order for the squiggles standing frame was placed and we were told it would take 8-12weeks for it to arrive, oh, so long. In the mean time we had taken Faith to see the orthopedic surgeon and he said that it was crucial for Faith to get her standing frame so that her hips could be pushed into place but the arrival was still so far off. We just had to wait. About a week a go I was contacted by the company saying that the squiggles standing frame had arrived and it had only been 6 weeks! It was delivered this week and when we placed Faith in it to fit it correctly she was happy, she loved it! She kept trying to push herself forward. Her ocean blue eyes glowed with happiness and being in a different position. We will put in her in it for about 15minutes a day and work up to more. When Faith is in the stander, she wears her AFO's and her leg wraps for additional support. After Faith only being in the sitting position and lying on the floor I didn't realize how tall she is. She is growing and I love that. Amongst the excitement of it all and for a fleeting moment that is soon pushed to the back of my mind, I see her walking around and the house, playing with the toys she wants not needing all this equipment, then I exhale and come back to my reality.

Thursday, 16 August 2012

Food is friend, not foe!

Wow, what a crazy, busy couple of weeks, time is flying past and I wonder what I do each day, then I remember what is in each day and wonder how I managed it fit so much in, but it sometimes just goes into one giant blur. Clouds zooming fast through the sky with not a moment to lose. We had a flying day trip to Brisbane to visit the speech pathologist at the Spina Bifida Hydrocephalus Association and it is always such a pleasant, useful and inspiring place to visit. Our plan with the speech pathologist was to go through what we were currently working on, oral alerting, oral stimulation, sensory awareness and all of us learning makaton sign.  After which we were going to learn more about Faith's approach to feeding that the speechy had especially designed for Faith, working with what challenges we have and of course the distance issue. What an amazing program she developed! We are using strategies from the SOS feeding approach (Sequential Oral Sensory). The SOS Approach focuses on increasing a child’s comfort level by exploring and learning about the different properties of food and allows a child to interact with food in a playful, non-stressful way, beginning with the ability to tolerate the food in the room and in front of him/her; then moving on to touching and eventually tasting and eating foods. It is such a fun approach. We are not using the typical 'guidelines' as there is no one living in our local area that runs this program to help us so sadly can't run it the normal way with other kids and parents but not to be dismayed as a feeding approach was created just for Faith. We have session goals, medium goals and long term goals with our ultimate goal being Faith eating and no tube.

We had our first session, where I had prepared different foods, purees, hard munchables, ranging in colours and smells. I had never pureed just cauliflower before and what a strong smell it has to the luscious sweet smelling pear and we all wanted to devour on the spot. Foods are arranged in order called a food hierarchy, wow, so much to learn. Speech Pathology is such an interesting field, I am learning so much and enjoying learning too. Anyway, we followed a plan with certain guidelines. Faith tolerated the food in front of her, she didn't touch it but she allowed us to play with it in front of her and make a huge fuss, three adults having carrot sword fights, making faces, decorated cauliflower bouquets with sweet potato, fruit hand cream, flying saucers, all the manners at the table were gone. If Faith didn't want a particular food on her plate, then we covered it with a servitte so she couldn't see it. We all smelled the yummy food as it went around and talked about the flavors and scent. I am even more appreciating my awareness of texture, smells and taste. it is so easy for me to just eat what I would like and not think of how a certain texture or tastes, scares me, makes me uncomfortable or just freaks me out. Apparently Faith did really well for the first session as some kids yell and scream and protest but she sat watching, observing and wondering. The plan is to do the session once week and work up to more and also to have a family meal together so Faith can just watch and be part of the family fun at the table. I must admit I am excited, we have goals, we have dreams too but most of all, this will be better for Faith, this approach will work and will get rid of her tube and have her at least eating purees again.

We went to Byron Bay on the weekend to visit some family and as we sitting in the annex of their caravan, the wind blustering outside and the rain hoizontal Faith dipped her hand into my cool lime and lemon drink, she swished it around and then did again and again. Then of course, the little chubby hand comes right at me to say, I am clever mummy! We then explained to our family why this was a good thing for Faith to be doing and why we are encouraging food play over manners. With everything I eat I show Faith and one day she will see food as friend not foe...

Friday, 10 August 2012

My Birthday

A sunny trip to the beach
Here I am , I turned 31 today, wow! When I write it down it seems so much more older than when I think it. I have always loved birthdays, my mum and dad spoiled me with parties and being surrounded by family and friends. The pool cake was my favorite that my dad decorated. What precious memories to have. Faith picked up a cold and as first I thought, this isn't too bad but it has turned out to be not very nice. With the oxygen nasal prongs and NG tube it is making it quite hard for her to manage her running nose and I would think a sore throat. The cold struck quite suddenly on Monday afternoon and she slept most of the day yesterday and seems to be doing the same today. It is horrible. I feel so helpless. Faith has not really had a cold/flu before so this is new to me. I was hoping we would have a lovely day together on my birthday but instead she is sleeping and sleeping. I decided to take her to the doctor this afternoon as her eyes are quite red and runny not sure if she has conjunctivitis too. In between making sure Faith is comfortable and as happy as can be with being sick, my husband and I are going to have a quick lunch together and then hopefully if Faith is well enough go out to dinner tonight in Byron Bay.

It has been a few days since I wrote the above and Faith ended up sleeping for 3 days with a few short minutes up to change her clothes and refresh her a bit.  A week later she still sounds so rattling, she doesn't have a chest infection thankfully and the doctor didn't think she needed to be in hospital as she has oxygen, an NG tube, we were pumping the fluids through and we were montioring her oxygens levels and her temperature. She has been getting better quite quickly since she just spent so much time sleeping.

Even though my birthday was spent back at 2 hourly feeding Faith, it was still a special birthday, I got remembered by friends and family and two lovely meals out, no washing or drying up. I even got a sleep in, a rarity in our house. This year we didn't up in hospital with Faith even though she had a bad cold, it wasn't anything more. Though I was scared it was going to happen but it is still a birthday to remember with fond memories!

Wednesday, 1 August 2012

Textures and still hunting for 'normality' in daily life

Until our blessing of Faith arrived I hadn't thought much about how textures affect our every action. Textures are everywhere, everything we touch and taste has textures. What we walk on has textures, our shoes, socks, the food we eat, the clothes we wear. Of course textures have always been in my life but I haven't really stopped to think how textures effect those that are very sensitive about it. I take how I am effected about textures for granted. Faith when first presented with a soft, fluffy yellow feather, shook her head and turned away, clenching her firsts so she didn't have to touch it. Now after about 3 weeks of feather play, yesterday I said would you like to touch the feather and instead of shaking her head, she reached out and rubbed her fingers through the soft strands and for a few seconds, enjoyed the texture and then she had had a enough, but it is progress, steps to being able to touch and enjoy the pleasures of textures. It was the same story with crayons, which she now picks up and is intrigued by what then do. It is like play dough, at first nearly crying when we brought it out but now she squishes it her hands and drops it over the edge of the play tray. When we wandered through the house her hands would recoil and refuse to touch but now she likes stoking the curtain and rubbing her fingers through it, she will reach out and touch the mosquito netting on the door, her hands rub the smooth surface of the bannister on the deck, her fingers outstretch and feel the coolness of the window. There are so many things she will now touch. All these are such achievements and we celebrate each one. 

I have been reading about sensory processing disorder as I like to learn as much as I can so I can help Faith the best I can. Yes, my brain does get overloaded and there will be days where I look at my pile of reading and I want to cry but other days I embrace as it helps me manage our situation and encourage Faith's development. People, like our amazing speech pathologist help me learn and take control of what we need to do, so we have goals, strategies and charts, these are the foundations of our day and because of it progress is made. The book I am reading at the moment, The Out-of-Sync Child has Fun, Activites for Kids with Sensory Processing Disorder helped me understand the different ways sensory processing disorder effects children. It has also given me strategies on how to help Faith move beyond the fear of textures to move to sensory awareness. Sensory processing is the normal neurological process of organizing sensations for our use in every day life. We use sensations to survive, to satisfy our desires, to learn, and to function smoothly. Typically, our brains receive sensory information from our bodies and surroundings, interpret these messages, and organize our purposeful response. 

There are different types of sensory processing disorders but in The Out-of-Sync Child has Fun it is defined as the following, Sensory Processing Disorder (SPD), also called Sensory Integration Dysfunction occurs when the brain inefficiently processes sensory messages coming from a person's own body and his or her environment. The person has diffculty responding in an adaptive way to every day sensations that others hardly notice or simple take in their stride... The senses of seeing, hearing, smelling, tactile and taste can be effected. Wow, so much more made sense in Faith's responses after I read about this.

I think what I am finding hard at the moment is I see other kids playing with blocks etc and I really want Faith to experience that too but it takes her a lot longer to progress and even though her hand skills are improving it is a slow process. She gets so frustrated, I can see it in her face and when she waves her arms about when she is out of sorts. Just like any other mum, I want more for child. With Faith getting older I do feel the pain of her not being included with her little friends in their active activities. Of course, we have play dates and those type of things. But some just get concerned that there little one will pull Faith's tubes or be too rough. Yea, it would be annoying if the tubes got pulled out but it isn't the end of the world, we just put them back in again. I guess I feel like I missed out on the 'mum's club', you know, sharing the raising of our children together, going to the park, sharing stories on how to make it through, the subject of more babies, all our stories are like medical stuff for example, our stories and day to day struggles are different, we have experience in medical areas most of them will never see. Though, of course I share our journey with our friends and some try so very hard to understand, it is just hard sometimes being a little left out though not intentionally. I love Faith so much, I love playing with her and showing her new things, I love when she understands things for the first time, laughs late at night with her teddy, those treasured moments. Faith is growing, gaining weight and some day soon I am sure she will be able to sit up, crawl and play more it just takes a little longer. Family trips are becoming more regular, we are doing more together as a family with just a little more patience required. It a round about way but we have found our own version of normality, our ever changing normality.