Day 3 - No NG Tube - Increasing Volume

Emotions are crazy and I sometimes I wish I turn them off or even just suspend them for a little to have a break from them hitting me when I least expect it. I had a good cry tonight just overwhelmed with tiredness more than anything I think. We have only been in Brisbane a few days but feels like so much longer and the thought of going though great is daunting - going outside my comfort zone that has now been created her at our apartment. I plan to go home and recreate our little spaces for Faith with our encouraging words and pictures. Just because we are going home tomorrow doesn't mean it will all be easy from then.

We have seen improvement today with Faith drinking her blended diet, about 600mls plus which is wonderful we just need to keep working at more volume. She still doesn't want her spoon but that is something we can work on as we go, the big thing is just getting her drinking more blend and getting that weight back. Faith is so funny she gets frustrated and annoyed when we don't feed her at her fast pace. I have some lovely pictures of her covered in food and it is a pleasure to see and clean up. Faith is still quiet, sleepy and weak but getting less of those things each day. Her tummy is filling out instead of decreasing, though I wish mine would decrease, lol. I love seeing her get bigger slowly.

We, being hubby, speech pathologist and I had a team brainstorming session and nutted out different ideas and plans. Faith now has a a variety of cups for different drinks and she is can pick which ones she wants to use. We tried to go a bit more with what Faith wanted in regards to sleep and she had two two hour naps and was stronger and happier for them. Her routinue being completely changed she has to figure it out all over again.

We headed to Garden City Shopping Centre for some fun retail therapy and feed Faith in the food court and she watched the busy people and enjoyed people watching again. She was still quite tired so we headed back to the apartment for her 2nd nap.

Our biggest thing today was that we found uriates in her nappy, not a huge amount but it was probably just come through now since she wasn't eating much a few days ago and all the food she was eating flushed it out. Still didn't like seeing it though but a few hours later with another wet nappy they were barely there.

So overall Faith has increased the amount of volume she has drunk, more alert and playing in tiny amounts -  a high five, a wave and pushing over a few toys. We are getting there and tomorrow we go home without a NG tube.

At last a local Occupational Therapist

Since last December 2011 we have been on a waiting to list for Faith to get assessed to see if we qualify for funded occupational therapy. We have had meetings at our house, filled out paperwork and then a month or more a go we find out that the funding for this program has been axed so no chance for OT services. How disappointing! But later are told that this state department partly funds another organisation and they are able to send some clients there and they have OT services, but yet again another waiting list! 

In the mean time we investigated private options and eventually got an appointment (when I could get the lady to call me back), the lady was nearly an hour late and I was trying not to let this influence my first impression, when she did turn up, she was ok but implying that we should do lots more use of the ipad, which I think is ok, but Faith needs to learn other activities not relying on the ipad. She did suggest a few helpful things but overall I didn't really feel she listened. This was later proved when after 6 weeks or so we receive her report and her bill and she got so much information wrong, she didn't listen, she firstly spelled Faith's name wrong, all the details surrounding Faith's food aversion and what skills she does have she missed completely. It was rather a disheartening report. Most of the activities she said we should work on she could already do! So not an option to go back. A bit disappointing!

A few weeks ago we got a phone call from the organization that is partially funded by the state government and said that Faith could now receive services from them, yay! The lady sounded really nice and we made an appointment for the following week but something happened and it was rescheduled to last week. It went really well I think. They make goals and then work on them according to importance which is great. We also met their speech pathologist and she is going to give me a hand learning Boardmaker. So I look forward to future appointments to see how they can help. Our biggest goal is to help Faith learn to grasp objects and increase her skills with her hands. So we shall see!

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.