Hunger Induction Program - Day 2

It isn't long until we take Faith's NG tube out and I really truly hope it is forever. After reading and reading all about tube weaning and the different styles of approaching it, we decided upon with consultation with our speech pathologist to use the similar methods to the University of Graz. As of yesterday we are in the hunger induction phase of Faith's tube weaning and we have noticed she is is discovering hunger but still not taking taking anything orally, still feed through her tube. She is interested in food, even had a few dips into my bowl of cereal. She stares very inquisitively at food and seems to want to know more.  She also has been playing a little with her food at her own choice.

The preparation and research is quite intense and draining. I talk to the speech pathologist every day and we work through an concerns or issues. We go through EVERYTHING and have back up plans. It is all very well thought out and planned. We thought we would make some Boardmaker activity sheets on first tastes, eating and the one I doing tomorrow is on tastes, so pictures of her food in puree form and its normal form. We are also increasing our Makaton sign use with signs to do with food. We have been having 'eat dates' nearly every day so Faith can see other little people and big people eat. It has been great getting out and seeing friends each day but also quite tiring. On one of our outings this week gone, Faith threw her NG tube up right before her tube feed was due so my friend, whose daughter had a NG tube a few years ago kindly gave me a hand so I didn't have to call hubby, all I need is someone who knows what to do, holding Faith still and I can do the rest.

I have our Hunger Induction chart printed out by day and write many many notes on it. So we can see how everything is going. I have my daily running sheets for when we are in Brisbane, I have equipment, food, schedules and activity lists. It is all really ready to go and I can see Faith will have fun with what we have planned but I just want the time to arrive so we can get started with no NG tube.

Do you know how hard it is to find books for kids that just talk about eating and food? It is quite hard.  I have Teddy's Bears Picnic, Possum Magic, At the Supermarket, My Food and a little board book about foods, but they are so hard to come by, if you are reading this and know of any, please tell me as we are trying to have Faith surrounded by food activities while we are Brisbane and when we come home. We have a Play School DVD called Munch and Crunch and a Dorothy the Dinosaur Tea Party DVD. We are trying so hard to show Faith all about food and drinking. It that is fun and we can have lots of fun with food. This morning Faith and I had a tea party with the grey elephant and two of her dolls. She was quite fascinated. Now we just have to work our way through this hunger induction phase and learn more about Faith's ques on food and hunger and try and show her about hunger. It is an exciting new phase for her and us and I believe she is truly ready for this. Her whole identity is changing by introducing food, as she has been NG tube fed for over a year.

Here is a link to a interesting case study on tube weaning, I have listed interesting feeding blogs on my blog list and resource list if you are interested in learning more.

http://www.pediastaff.com/blog/case-study-pediatric-feeding-tube-weaning-3816#

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. 

21 Days of Gratitude - Day 9 - Homeschooling

 Have you ever just felt inspired to act? I took my daughter to an early intervention program with so many hopes of what it could provide, new experiences, access to helpful therapists, meetings other children and guidance with how to teach my little girl activities that other children find easier. I stayed a year and continued to hope but though the people were lovely and friendly it didn't fulfill the needs of my daughter. Of course I read to her, sing songs, have sensory play, feeding programs, physio and that type of thing that she needs, but I wanted to know the best way to help her develop and those things do that but how was I going to incorporate a home school program into our already full schedule. I think homeschooling is wonderful, in my opinion it gives the mind more opportunity to develop and more scope for the imagination. I can say this to be true as I was home schooled and I loved it. Even before we found out Faith had special needs it was a path I wanted to share with her and my husband. I contacted different schools out of our state that offered homeschooling and basic preschooler programs but she is too young they say so where do I go from here, I just want to give her more. So I left it for a while just working on our other programs and there is plenty of them.

I subscribed to Carrots are Orange and each day I receive emails of different activities and outings that the author Marnie has been up too. I love getting her emails, there are so many great activities but some are too advanced for my little lady yet and in my mind I make a note of trying to adapt something similar for Faith but haven't got there yet. A few of my favorite emails were sitting in my inbox waiting to be read and this morning I read Homeschool 101, our morning routine, and I was inspired. What inspired me? well it was that Marnie has 2 little ones 3 and 1.5 years and her home school routine was so simple and just getting back to basics helping her children grow and develop with no bells and whistles. She had achievable goals and activities, and to me, it made me excited. Faith as yet doesn't have very good hand skills, they are getting better and so is her strength but it hurts me to say but we are very behind. She understands a great deal and is learning sign but Marnie's program gave me ideas on how I could incorporate a home school routine into our life. I think all I need sometimes is to see how other families manage life and I am excited about planning and implementing. Nothing big, but simple as that is all that my Faith needs. I can see it adapting already into our life. An there is nothing more Faith loves than books, music and singing!

There is nothing better than another mum's recommendation of books and I must admit I headed straight over to  The Book Depository and ordered I am the music man and The Ants go marching on, as I think Faith would enjoy those books immensely, I did slightly indulge myself with also getting The Rhythm of Family by Amanda Blake Soule. I eagerly awaiting there arrival in my letter box! Until next time! 

 

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...

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!

Learning about Makaton Sign

I have always thought about learning sign language as I thought it would be a useful skill. I thought about learning it when I was at university but it was one of things that I didn't get to do. I have seen staff at early intervention use it and wonder if it would be of benefit to Faith but no one had mentioned it so I didn't think that much of it. Then I learnt a few signs at early intervention and tried using them with Faith and she responded with curiosity and interest so when we were in Brisbane and talking to the speech pathologist I mentioned it and she introduced us to Makaton sign.

What is Makaton Sign?

Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order. With Makaton, children and adults can communicate straight away using signs and symbols. Many people then drop the signs or symbols naturally at their own pace, as they develop speech. (sourced from The Makaton Charity) 

Faith's speech is slowly developing, she is saying more words and trying out more sounds but we have sort of reached a plateau so the speech pathologist thought that by teaching Faith Makaton sign we would be able to use a different cognitive pattern in Faith's brain and help her speech along. She gets so frustrated when she isn't able to communicate what she wants or needs so we are hoping that teaching her Makaton she will be able to communicate more. She loves watching the hand movements and she seems interested. It will also get her hands moving more and improve her motor skills. It is exciting that Faith will be able to communicate more in time but also to have something else to think about and entertain my brain I think is good too. It will provide insight into Faith's mind and who she is and what she wants to say. It will also provide a strong foundation for early literacy and continued language development. 

So in the last few days since we have been home we have been watching The Makaton Vocabulary Auslan Edition CD on my computer and it has been showing us what we need to get started. Participating in a course would be better but this is the next best thing. Shortly we will have the book to go with the CD and can learn more. We are starting really simple and very slowly so as not to overwhelm Faith and us. We will be really patient with her and ourselves. I learnt recently that a child has to know 150 - 200 words before they start using more words so I guess that idea would apply to sign as well. Another key is to be consistent and incorporate sign into every day life and always use it so Faith can learn. To ensure Faith gets the connection more quickly we will always use the sign and the spoken word. We have chosen simple words to begin with. For example, finish, more, play, water and bath. Just to get us started. We will also teach other family members so we are all doing the same things and Faith will hopefully be able to understand easier. Sign language is so visual that we will have to make sure that we have the appropriate facial expressions and encourage Faith's attempts and have loads of fun too which is so important.

Some of the resources that I have found include,

The Makaton Charity

Key Word Sign Australia

Australian Baby Hands

We are excited to start this new activity with Faith and it will give us something to work on as a family and provide numerous benefits to her.