Take a leap! - NG Tube Weaning

The plan is still set to take out Faith's NG Tube next week and how so very close it is.This is a time for change and growth and at home at the moment it is full or research, planning, lists, charts as we can't be too prepared for next week. Our speech pathologist is gearing up the same way and she is amazing, but how do you say thank you to someone who is doing such an skilled job. In our research so far we have found a very interesting case study, Case Study: Pediatric Feeding Tube Weaning , it is extremely interesting and helpful in our decisions about how to manage Faith's tube weaning. Here are some other helpful links I am found so far

No Tube 
The Crunchy and the Smooth 
The Life and Times of Stella 
Tube Fed Kids 
Article - Tube Fed Dependency 

This afternoon we are heading out for a 'eat date', with a dear friend and her 3 kids, her daughter had a NG tube and got her back to eating. Faith is getting better and better with tastes. She tasted and tolerated yogurt yesterday and she is drinking really well. One of the biggest decisions we had to make was deciding to wean Faith off some of her blended diet before we go to Brisbane so she is hungry and ready to eat. There are so many things to think of, locations for activities, sleep considerations, constipation as her diet changes, how does she take her medications, what foods to try, weather conditions, music, play ideas, the best forms of communication and most of all and the most important one is TO MAKE IT SO MUCH FUN for Faith. I must admit most of spare hours and not so spare hours are consumed in organising but I truly know that it will pay off. 

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. 

Sensory Play and Developing Oral Skills

It is amazing when I start reading about things such as the suck, swallow and breathe synchrony how eating not only for its ability to sustain us but its ability to help development, strengthen and speech. The body is truly amazing. Our lovely speech pathologist asked us to read a booklet called Discovering the Developmental Significance of the Mouth, it isn't a long read but it is very interesting. Until we had a speech pathologist that got into the basics of oral development I didn't realize what we have been missing out on. Since our speech pathologist isn't local she telephones us and posts tools to us. We are planning to have feeding and speech sessions via Facetime, isn't technology great! We are starting at the beginning, oral hygiene. Faith is definitely ready for this as tooth brushing has become a fun time instead of a time for gagging when it enters her mouth. We sing brusha brusha brusha and my husband brushes his teeth while brushing Faith's. This is their thing and she looks so eagerly when he heads to the bathroom to gets his tooth brush and hers. She tries saying some sounds and is so curious with it.

Faith is also interested in licking and putting objects in her mouth with our help. At bath time particularly while we are playing games with the crab and duck she opens her mouth and wants to lick and bite on the crab and duck. She won't hold it herself but is keen to have the toys in her mouth and explore them. It is so encouraging! She has not shown this type of interest before and is a great step forward! For months, we get out the crayons and I put them on her play tray and draw things and encourage her to touch and play with the crayons but she just watches. My husband was drawing with her and she just picked one up and dropped it, then another and another. We would hold one out and she would take it. Very exciting! Faith is texture sensitive and the desire to play with the crayons is such an exciting development. She has repeated it lots of times now and has transferred the skill onto different shapes of play dough. Before, only just touching round bits of play dough but now different shapes and squeezing them in her hand, even looking at them. I love seeing her take on different tasks.

I think Faith is enjoying learning makaton sign, when I do the sign for I love you, she smiles and makes cooing sounds. She definitely understands no/stop as the bottom lip comes out and she cries. It looks so sad. We have the signs pinned up around the house so we can use them more and learn more signs. Our speech pathologist suggested a chart with five signs to learn a week and then change so we keep learning more. We received an exciting package in the post with whistles, feathers, straws, reading materials and charts. All the most wonderful tools in helping Faith progress to No Tube! It is good having goals and stages to work through as then my brain doesn't become overloaded and I can sort it into a system to work with. I have been madly sorting and reading so I can make sense of it all.

We have charts to remind and help us with the activities to learn to include in our day for example, an oral stimulation program, things like stroking and tapping of Faith's cheeks, and other aspects like an oral alerting program for the body and face warm up. Lots of great activities to help Faith and we are seeing small changes already. I like having a system, a plan, it gives me direction for the present and the future, just thinking where we were this time last year and now we are planning Faith's 2nd birthday party. Blessings are everywhere, we just need to look!