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

Day 31 - No NG Tube - Brainstorming

I forgot to post this yesterday! So here it is

I must admit I thought we would be further along but I should know better considering Faith always like to do things a little different to the 'norm'. Yesterday morning I was happy that she had ate more than the day before and maybe we were turning a corner but afternoon came again and she didn't want to eat, only have some water/vitamin drink, trying not to get discouraged. But it is hard not too.

I was looking for ideas and ways to try and offer food differently to Faith and came across the following blog Tube Weaning - Graz Style, I have read it before but hadn't gotten all the way through. When reading I discovered they were syringe feeding pureed foods and we have been doing that with water and we were hesitate to do the same thing with pureed foods in case she got an aversion to the syringe, it was sort of our safety net for getting water/vitamin drink in.  I realised that we needed to take every opportunity for Faith learning to eat and so this morning I tried some pureed food through a syringe and it went ok, afterwards she actually took more food through her modified sippy cup so it is a help. I will keep offering the lovely collection of spoons we have. 

I have a friend who weaned her little one off a NG tube a couple of years ago but don't know anyone else who has been through such a journey or going through that journey now, I wish I did just so I have some one to talk to about what it is like for the parents and how they made it through each day. Oh, I just wish that each day wasn't so unknown with food, I can't tell from one day to the next what will happen with Faith's eating. Will she eat or not.

Maybe we need some more food play.

Day 28 - NG Tube - Creeping upwards

I must admit I came pretty close to giving up yesterday and thinking should we just put the NG tube back in, but thankfully, hubby encouraged us to other ideas. Faith got to the point yesterday, Christmas Day and she was barely eating. We were questioning ourselves, what is causing this? Her swallow is fine, no signs of a shunt malfunction, no obvious signs of a UTI, what is going on? We could see Faith was really hungry but why wasn't she eating?

We shifted around her sippy cups and even tried a bottle, no luck. mmmm baffled. By the afternoon after her sleep we had Faith's nasal prongs off to give her cute soft cheeks a rest and her nose was running, and also her eyes were quite moist. Did Faith have a little cold and this is why she isn't eating? We gave her some panadol and laid her down on her cow pillow and put some water combination (purelyte, sugar, poly-joule and water), doing whatever we can to get nutrients and calories into Faith and squirted some into her mouth with a syringe into her mouth. Over afternoon she manged nearly 170mls of our water combo. I asked her if her throat was sore and she nodded. Was this the cause of her not eating. Only time will tell.

This morning we have seen a huge improvement with Faith, she has at least doubled what she had yesterday still not a huge amount but on the way up we hope. Giving her some panadol too and that is helping. Faith has been so much happier, playing and talking. It has been a much much better day. Just need to keep having faith that we will get there.

Day 26 - No NG Tube - Anxious

I thought I better come back and write where we are up to so the days don't just blur into many which they tend to do more and more lately. I am trying hard to keep a record of our journey so we can learn from it. It has been 26 days since we took Faith's NG tube out and I must admit I am discouraged and sadden at this point, why? Because the last few days she hasn't been eating very well again. Completely refusing food today not having much at all. We have changed cups, changed tastes and even tried offering her a bottle. I cradled my baby now a big girl in my arms and she refused the bottle but reached out and touched my face ever so gently. 

My husband and I are struggling, we are trying so many different things to help her learn to eat but today isn't good. On the bright side she is talking more and is at times very happy, usually after a small amount of food and to the other extent where she is screaming and screaming. Hunger pains I would think. We are anxious about where we are at and how to help Faith further. We cannot fail her, we cannot send her back to a feeding tube and endless days of vomiting and lying on her back due to her vomiting more and more. Now she sits up nearly all the time and is becoming more grown up. We cannot fail!

As Christmas Day isn't far away in our part of the world I long to have Faith enjoying her surroundings more and understanding Christmas but it is all in time but be it ever so slow in our world. We took Faith to Carols by Candlelight last night and it was the first time we have been out amongst so many people in a very long time. Faith had a wonderful time watching all the other kids play and sing. She looked so alert and her blue eyes beaming intent on not missing anything. We caught up with friends chatted and laughed and enjoyed the coolness of the evening. I wonder what it is like to have my little girl play and dance in the moon light?

Day 22 - Tube Weaning - confused bubba

I found the below quote in a book I was reading today by Beverley Lewis and I wanted to share it with you.

'I am on a journey and sometimes it seems ever so long, still little by little, I'll find my way with the help of my heavenly Father. I can never go wrong by clinging to His hand'
 
Tuesday night came and we were worried Faith still hadn't eaten much, she was sleeping peacefully but still not wanting food. Was it the UTI? The antibiotic? We both went to bed in low spirits and anxious minds. Midnight came and Faith decided she wanted to eat again and she ate a lot more than usual yesterday which was great. But one big thing is that Faith seems confused with her yes and no, as sometimes when she is shaking her head answering no saying I don't want food or whatever but meaning yes so we managed to sneak a mouthful of food in and away she went eating and eating. She still struggles to eat in the afternoon. I think that is due to her rising early and then having her one and only nap from 9am - 12noon and then she gets too tired. It is a wonderful relief to see her eating again.

I wouldn't say we had a good night last night. Faith woke alot and even though I am more than happy to feed her if she is hungry, last night she just didn't know what she wanted. She would have some food and then decide no I change my mind. It was so confusing. As I knew she was hungry but couldn't get her to eat. As the night wore on we all got more grumpy and not knowing the best way to help her eat.

By morning we were looking at possiblities of what was now stopping her eating compared to yesterday. The only real change had been changing the colour of nuk sippy cup from blue to green. Surely that wouldn't be why? Anyway, this morning when I had put her back to bed and didn't know how to proceed and I said ok to her, little bug we are going to give you some food and then you can come back to bed. I picked her up and tried to put her in the stingray pram and she shook her head saying nah nah. So I said ok we will sit on the lounge then. And then she had a nice big breakfast in the blue nuk cup no green one in sight. She also had some water too. She was much more settled and I put her to bed and not long after she was asleep.

Day 6 - No NG Tube - Small steps - Life is changing

Faith's learning area, lots of things relating to food

Yesterday Faith ate beautifully drinking heaps of her blended diet, I didn't get a chance to make it to the computer as I have catching up on my housework and some sleep. I also spent some time yesterday making a learning room for Faith. When she had the NG tube she spent a lot of time lying down because she vomited so much but now she spends most of the day sitting up which is wonderful. Life is changing and in so many good ways. 

She is starting to talk again and she was happy to have a book read to her this morning as previously she was just to tired. Faith still doesn't want to play but small steps in the right direction. She is looking more alert and is much more vocal in her actions, saying up up when she has had enough food to whining when she doesn't get it her way. Today she hasn't had as much blended food as yesterday but that's ok, Faith needs to choose to eat and lead us the way she needs it to run. We keep offering but only twice and then start playing again or do something else. Offering a short while later. It is hard to watch when I really want her to eat more and she doesn't want any more.

It is 36 degrees plus here today so I am very grateful for our new home with its air conditioning, with Faith not drinking a lot we can't let her get dehydrated. We still have had a higher than normal temp for Faith in the morning and each day since Friday we have wondering what it is about. It leaves as quickly as it comes but still concerning. But after some more brainstorming we came to the conclusion it might be that one of her medications isn't being adsorbed as consistently as when it went down her NG tube. We were weaning her off gabapentin before we took her tube and still are. After some reading on the net we thought it might be the gabapentin doing it. As she was on it for neuropathic pain and so her body is probably just trying to sort out its new rhythm. The temperature isn't lasting as long each day now and is not affecting her as much.

 It is good to just be at home and find a new routine as we don't have one. Faith used to have one sleep in the middle of the day, now she has two but as I say this, she is lying in bed complaining and every now and then talking, this is her second rest, maybe she doesn't need it, oh, so confusing. The breeze is hot and my washing drys nearly instantly all the while I am inside drinking hot tea. There is so much change around us, Faith has one less tube on and now when she is asleep I don't have to stand over her cot pushing blended food down her NG tube.

I am still using the same recipe for her homemade blend just adding a bit of fresh juice and electrolyte to it so it isn't so thick. I didn't expect her to drink her blend as I thought she would go straight to purees but the speech pathologist did tell me that Faith has to learn to eat all over again so going to a sippy cup to drink her food is just a step in getting her to eat via a spoon eventually, small steps. Faith slept through to 5am this morning which is a huge improvement on 2am feeds but I nearly was glad of a 2am feed so that she got more food into her but very pleased for the sleep just the same.

Day 4 - No NG Tube - Coming home!

We are home, I am sitting outside on our deck with the cool breeze refreshing me and the little wrens dancing around the backyard and the nervous young Rosella attempting to gain the courage to land on the bird feeder while I sit on the deck occasionally glancing up and watching him. So we are home, it is different, it is strange, no definable routine, it must be created again, I even feel like I am in a bit of a blur or mist, waiting for someone to wake me from this very strange dream. But is it true, Faith doesn't have her NG tube and it is wonderful to see her free from it. We are home and she still doesn't have it. Yay! On approaching our street she said home a couple of times, the first words we have heard her speak in days. Then while putting Play School on for her to watch, she giggles and smiles, though only fleeting, I can see more life coming back into her body.

It still isn't easy though, Faith has no real sleep patterns and wakes around 3:30am - 4am because she is hungry, this morning she only had about 90mls of the blended diet and we tried putting her back to bed and I could see she wanted to sleep but I think she was developing a temperature again, a morning thing, and I was right, it didn't get to 38degrees but was high enough to make her feel unwell and grunt a lot. It dropped very quickly when I put a damp washer on her face. She ate more blended diet later totaling about 150mls in the morning. But that seemed to be it, she didn't want anything, no fresh juice of blended diet, her next decent amount wasn't until 4pm when she only had 50mls. I guess it is to be expected since yesterday she had nearly 800mls so maybe she isn't as hungry. We went to the Spina Bifida Hydrocephalus Association Christmas Party and it tired her out. She met Santa for the first time and didn't cry and got a lovely gift of some books and a funky bath toy. 

We didn't stay long and headed back home and I am very glad to be home but will miss the face to face contact with Faith's speech pathologist. We are going to talk every day and I will send her texts to keep her updated and we can brainstorm any problems and that is wonderful and very helpful. Her support is what has kept us going when we didn't know how to proceed. But back to now and that Faith hasn't wanted anymore food. We have tried different cups again but she shakes her head and if pushed brings her arm to stop us. I must keep reminding myself that Faith is in charge and she has to choose to eat and drink not be forced. It is just so hard when I know she must be hungry and needing food. But I have to be very patient and push on towards the end goal. So my plan is to create a new food friendly zone and a cup station for Faith so she can pick and see encouraing and inspiring pictures and words around. It also encourages me greatly to see quotes and encouragement around.

I don't know what tonight holds, I am hoping Faith will wake so I can give her some more food but hoping she can find rest to gain more strength and gain weight but I must not rush this is only day 4, though I feel months and months have past.

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.

Day 2 - No NG Tube

Brain overload, how do I gather my thoughts? How do I sort them and renew my brain so I can function again. After our day starting at 2am towards the end of the day, I didn't feel like I was coping very well. Faith woke at 2am, hungry, irritated and having keppra withdrawals (she refused her complete dose). By 5:30am she had already had 5 lots of food, her mouth opening wide to take the food. She was still tired but much more alert and quite grumpy really. By mid morning Faith didn't really want any of her food from her spoon, the old spoon aversion rearing its ugly head. It was distressing to watch as I just wanted her to eat but I know it has to be her that decides to eat and wants to eat.

After brainstorming with hubby and the speech pathologist it was deicded that we should make Faith's blended diet and see if she would eat that as it is such a balanced diet and we know that it helps her gain weight and grow. So off hubby went to the store to by ingredients we missed, while Faith napped.

Faith spent alot of the morning grunting and just plain grumpy, she was hungry and she just couldn't get satisfaction, we tried a bottle with milk and she tasted it but wouldn't take much. The weather was very hot but Faith felt hotter than usual and when we measured her temperature she had a temperature and thankfully she just took some panadol orally and we didn't see that nasty temp again, thank goodness. A bit scary. We gave her wet face washers to play with and she took them to her mouth and spent the entire day covering her face with them and rubbing her mouth on them.

A trip to Southbank with the hope of Faith being distracted enough to eat but to no avail, she just didn't want it. What was going on? why wasn't she taking food after doing so well yesterday and this morning. Faith was drinking lots of a water, puree, electrolyte combination which is good. But just not eating much.

After our hot walk back to the apartment we put Faith to bed and she was asleep in seconds. We talked, brainstormed and talked some more and we got out all the sippy cups we had and decided to modify a couple and see if Faith would take some blend through her cup since spoon feeding wasn't working so after Faith's 2 hour sleep we tried and she took some and took some more, nearly 100mls! This is wonderful! I could barely believe what I was seeing, Faith was drinking her blended diet and was drinking lots. Yay!!!

So in summary we have made a lot of gains towards the end of the day but I know I have felt fear, scared, overwhelmed and longed for my little chatty, playful little girl but after some food she was touching my face and feeling better so there is so much hope for tomorrow!

NG tube is out and she is eating!

What a day, it has been full of intense emotions that have been feelings so desperate for this program to work to such joy and elation I just wanted to yell my relief to the surrounding world. I have pleaded with God and prayed and prayed and he has and is answering. Faith is now asleep in bed and for the first time we have stopped and thought what do I do now? Clean up? No can't be bothered I will sit down and write so I don't forget this day.

Faith slept through the night and woke hungry and we gave her her medications, water and electrolytes. She was still refusing any oral food or water. The speech pathologist arrived and we took Faith into the bathroom to show her her face with the NG tube and then I pulled it out and we waved bye bye tube and threw it in the bin. Wow! It is done!

Faith was overwhelmed and tired and from what I have read this seemed to be a normal response. With pulling the NG tube out a very different start to the day and we had a little food play session and she was ready for a sleep so we put her to bed and jointly decided to let her sleep for an hour and half and then wake her and start some of her planned outings. We woke her and she was upset and sleepy but recovered shortly after. We headed to the park and Faith was sleepy and not really into playing. We got out our pureed food, thanks to the wonderful Vitamix Blender, pureed grape and pretended to put lip gloss on and Faith tasted it and wasn't unhappy about it. Hubby and I played ball to distract Faith and the speechy used a special peach colored spoon and Faith took the food, we kept the distraction and it seemed to help and she was eating, she was very sleepy but taking the food. I think her body was telling her she needed to eat and drink and this is what she slowly started to do. She ate custard and by the end of the session was drinking some water (a combination of watermelon puree, water and electrolyte). The day before we had gone through lots of different type of cups we could use for Faith and Faith picked one but in the end it wasn't the one and she moved to another cup. After a good half an hour feeding with no NG tube we headed back to the apartment for a short rest for Faith and then have another feeding time.

Faith had a quick nap and we she took another small amount of food but required distraction but was doing ok. We thought it might help to go for a walk to Southbank and of course a quick stop for some delicious waffles at Max Brenner, our favorite cafe, Faith kept drinking which is wonderful since over the last week she hasn't drunk hardly any water. We headed to the pool play area and let Faith watch the other kids and she ate heaps more, her mouth actually OPENED wide for the food. She ate heaps and even tasted sweet potato. She has picked up after her eating sessions and we have had two more since we came back to the apartment and she did really well even when we hid her medications in some of the food. She is completely exhausted and after her bath is fast asleep in her bed. So that is our day, we have reviewed what worked and didn't and we have all planned what we are going to try tomorrow, our little girl Faith is doing so amazingly and I am so proud of our little girl. We have all worked together as a team and we are getting there. Praise God!!!

Hunger Induction - Day 5

So here we are in Brisbane at our apartment for 5 days to attempt to wean Faith off her NG tube. What a crazy day, being day 5 of the hunger induction program Faith is showing signs of hunger and we are trying to help her understand what hunger is what she should do if she is hungry. She is refusing all food and drink now. We headed to Brisbane this morning so we could take Faith to the Spina Bifida Association's hydrotherapy class, at home when we go swimming, it is just Faith, the teacher and I so we were excited to be part of class with other babies and toddlers. What a full on class it was, it was full of different activities to build strength in various areas and had songs and lots of movement. It challenged Faith on every level and it was good for her to be challenged outside her comfort zone but it was exhausting for both of us.  It was fun to be part of such a action packed class I wish we could come more regularly as it was good for her. Lots of practical and helpful ideas to take back to our class.There was even little ducks that had lights in them that Faith pushed back and forwards. We didn't make it it through the entire hour, I could see Faith was tiring but I was also feeling quite overwhelmed too. 

Faith didn't sleep very well overnight and rose very early, she was hungry I think and she was irritated and needed distraction and constant play time. When she is hungry in the morning she sweats all over but it settled after some water and later her home made blend. But I woke distressed too, I was second guessing what we were doing, my mind was consumed by doubt and fear, I know we are doing the right thing and Faith's NG tube needs to be gone but all the preparation and coming days suddenly seemed nearly impossible, there were a few tears but I had to keep going. The speech pathologist kindly asked one of the other mums if she would have morning tea with us and her two delightful daughters sat at the table near the pool and ate their lunch and though Faith was nearly going to sleep she tried to interact and when the little girl offered food I could see Faith wanted to touch as she reached out but was just too tired. It was good though.

We headed back to the speech pathologist's room a short drive away where there was a little place of heaven was set up with dolly's, teddies and a monkey were having tea and a play mat with the hungry caterpillar crawling around and toys and books were ready for Faith to have some fun. On the wall were quotes and words of encouragement like, 

No pressure

keep strong

relax

keep the Faith

keep swimming

life isn't about waiting for the storm to pass, it's about learning to dance in the rain

making a big life change is pretty scary. But, know what's even scarier? Regret. 

Your wings already exist. All you have to is Fly

With inspiring and encouraging words around it will help us keep going and remind us to relax and have fun as that is what it is all about.

We laid Faith down and with some relaxing music playing, she relaxed, chatted and eventually went off to sleep on the floor. It gave us a chance to run through our plan for the morning and of course the celebration of Faith's NG tube removal, tactics, strategies and of course the biggie that Faith have fun learning about food.

Checked into our 1 bedroom apartment, unpacked and make Faith's space and start to unwind my brain. Thanks to an inspiring group discussion with hubby and speech pathologist I am feeling motivated, encouraged and inspired that we can do this. There are so many people praying and God CAN do what seems impossible.The next time I blog Faith will have no NG tube! Bring it on!!

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 14 - Being able to Eat!

Food play

I am finding the 21 Days of Gratitude such a true blessing, I am looking for more blessings in my day and my hubby points it out too. I do have my challenges but at the end of the day I can look back and see what blessings there are. Today, my highlights were my friends, receiving a encouraging phone call and attending a 3 year old birthday party and seeing my little lady laugh and giggle, loving life. I feel the cool breeze on my face and stand and gaze to the sky and just breathe, a moment all mine. 

Well, we are on a bit of an adventure with Faith's feeding progression at the moment. After talking to the speech pathologist in Brisbane we decided that we needed to figure out when we are to jump in and take out Faith's NG tube. We could go on like this forever so we need to get it done. Yes, very exciting but daunting. So it's decided on the 28th November we are heading back to Brisbane to stay at a apartment near the speech pathologist and we are going to take out the NG tube on the 29th November and for the next 4 days have no NG tube and see what we can do. This is really BIG, Faith has had a NG tube for over a year and for the next two and a bit weeks we have to push as hard as we can with tastes and textures. On Thursday last week she tasted pear on her drink bottle and tasted her blended diet (not a bad taste, very bland considering what is in it). And every day since we retry tastes and introduce new ones. It has been a gentle rather pushed progression of carrot, pear, apricot puree in water. Ensuring we have a defined breakfast, morning, lunch, afternoon, dinner and supper food breaks. And of course keep feeding her her blend minus any commercial formula (energivit). The gastrointestinal doctor said that we should remove the formula (energivit) since it is upsetting her tummy so much.

Food is friend not foe!

The days are intense and if I thought I was busy before I was wrong because now I have barely enough time to eat in a day. Let alone stop and think, I just do. My brain is in overload of what we need to achieve and we are also trying to arrange eat dates with other little people as we need Faith to start eating even small amounts. I am so grateful to my friends for helping me on this one, particularly this one friend, whose daughter had a NG tube for a long time due to a heart condition. We went to her 3rd birthday party this afternoon and she ate and ate, she now has no NG tube. So there is great hope. She is doing wonderfully and loving tastes and textures of food. A testament to devotion and perseverance of a family to get her dear one off the NG tube onto food. She understands the hard work that goes into a day. I must admit I don't have much patience with anything else at the moment, I tend to work quickly, talk quickly and get stressed very easily. I am trying to take my time but I fear that if I do then I will miss an opportunity to get Faith to try a yummy food and all the effort, time and money that will be put in will all be vain. I need to trust God that it is going to be ok and he will give me the strength to push on. I really didn't think that this time last week Faith would be tasting food and progressing so well. I don't think I will ever take eating for granted again, the blessings of just being able to lick a ice cream cone without wanting to gag or even fighting against others eating. So the next time you have drink of milk or eat a chocolate just stop for a moment and think how much it is a blessing it is to be able to eat!

Feeding, we can do this!

In the past with Faith's eating orally, I am thinking about this time last year when she wasn't having anything by her NG tube, we managed to get a good rhythm going. But then Faith would get sick, a UTI or it was just her and we would back up and be back towards more tube feeding. At this point, Faith has all her nutrients through a tube via a blended diet and some energivit formula. To keep the feeding program consistent it is so important but there are little hurdles that are challenging. For example, Faith is waking at 4:30am - 5am and she appears to have an upset tummy, there is crying and she vomits and then is ok some what. I can see she is tired and not really ready to face the day but she is unable to stay in bed so her days starts and so does mine. I am glad the birds are up first.  As previously mentioned we are trying to get her to drink water orally before every tube feed or meal time and yesterday was no different. Up when the birds are singing for the sun to hurry up. Faith happily drinks water and then I give her what she can't drink down the tube. She is sweating all over this morning but sometimes, well, quite regularly she does that, that is just Faith.

After her energivit formula feed she again has a tummy ache and is still sweating, I think it is her teeth as she is grinding them a bit. We have morning tea outside on the deck and Faith sits up and watches the world go by and she drinks water and curiously watches us eat. Afternoon tea goes pretty good too except when I do her tube feed she just vomits and she sweats all over, oh, please not a UTI but it could be. I am thinking surely not we have only had a week clear and what about her feeding program we are never going to make it if she just can't stay well, panic is in my mind and fear too because it is just such well known terriorty for us.

 So I plan a BBQ for dinner where Faith can watch her dad cook yummy food and at the same time see me prepare the salad and potato bake. I am concerned sitting Faith in her pram will just make her vomit if she isn't feeling well but we have to persist. She watches the world from her mat on the deck and watches an ibis fly over. Dinner time arrives and at the table she is fine, she doesn't want the plate or food near her but is very very content sitting watching us eat with the occasional drink and we talk about our day and she is happy. After dinner we take her outside and blow bubbles as the sunsets on yet another day. We reluctantly test for a UTI but it is inconclusive so will try tomorrow, I hope it isn't, I really do! Hopefully tomorrow will be the day we can try food on her lips again and I hope she is ready for it. We are aiming to do Faith's feeding program today and then again tomorrow as need to get back into the rhythm of it. Let's hope today is the today for Faith to have a positive taste of food. Until tomorrow!

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!

Faith's feeding program - progress!

Last week when we went to Brisbane for Faith's sleep study we also had a appointment with the spina bifida association's speech pathologist. We couldn't fit the new pram in the car (need to get a bigger one for all the stuff) so we sat Faith in a corner chair and had a little table too. Last time we tried a corner chair Faith needed more head support than what it could give but this time after we strapped her in with some green lyrca she was fine, she liked it. We started Faith's feeding program, working our way through the food hierarchy and when we got to the avocado and I didn't even cut it up, she started rolling it around, mashing it in the other foods, she used it like a ball and she got quite vigorous with it. Faith was having fun!

Faith then waited for me to bring out different foods and mashed, squashed, squished and then she wiped her head and it went all over her head, it was great. Faith hasn't played with food for sooooo long. We can see the program working and it is exciting! Since we moved and there is so much change (an unsettled Faith at night with little sleep) we thought we would introduce family meals together. Last time we tried having dinner together she just got so upset and it became to stressful for everyone. Our new house has a outlook to the backyard where little wrens sing there songs and we feel safe in our little haven.  We have now had two family meals together and she has laughed at us while we eat, chatted, sung and looked curious, so it has been a success.

Family meals are part of Faith's feeding program as it is part of the transitioning process back to eating. It feels good to start this 'normal' activity. So Faith feels in control we have the food set out so everyone just serves themselves and hopefully then she feels no pressure, we also use white plates like in the feeding sessions so Faith doesn't get distracted. She isn't eating yet but we are on the right track to introducing food again. Each day Faith is taking a few sips of water, at first she shakes her head and I say, just a little bubba and her little tongue comes out for sip. Such a good little girl.

I am hoping we will have another feeding session either today or tomorrow as it has been  week since we had one and we are trying to work up to 2-3 times a week. I love seeing Faith get better and better...

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.

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...

5 weeks on a blended diet!

Wow, what a 5 weeks! We have seen Faith go from struggling to gain weight to Faith gaining 300grams in two weeks. How exciting! She is looking chubbier and is stronger. We seem to have vomiting down as well, once a day! It has taken a lot of adjusting the blended diet and we are still adjusting and trying to find the right balance. We are nearly 50% blend to 50% formula, that is exciting. 

We are introducing more foods for example, last week we introduced flax seed oil, it has so many wonderful health benefits and she is tolerating it, so that is wonderful. Now we have moved onto introducing molasses, we usually introduce a new food over about 7 days as Faith has such a sensitive tummy we didn't want to rush it. We are trying to get more fibre into Faith's diet as up until the blended diet there hasn't been any in her diet due to using formula. It is all about balance. Each night we have been giving Faith a probiotic as we want to get the good bugs back into her tummy. She is waking happier most mornings and sleeping so much better. I am loving having more sleep but I find the more sleep I get the more I want. So funny. Faith generally has a couple of hours sleep during the day too waking only when formula is running so I look forward to having even less formula in her diet.

To give you an idea how our menu is progressing this is what we are currently working on,

• brown rice
• wholemeal bread
• avocado
• sweet potato
• carrot
• banana
• pear
• apple
• apricots
• full cream milk
• slow cooked roast beef
• flax seed oil
• molasses

Not a bad diet for a almost two year old. We rotate the ingredients but as we are still introducing different foods we are a little more careful. We are trying to increase potassium, fiber and iron but not too much more protein as that tends to make Faith a little constipated. We would like to add ingredients like dates, tahini and barley but will do it slowly. It is so nice knowing Faith is eating real food and we can see so many improvements. There are so many steps forward for Faith this year it is wonderful to see. Faith is showing more interest in food too. Opening her mouth for water and being interested in food when we are eating but still shakes her head when offered but we will get there. Our nutritionists is giving us good advice and support. 

I must admit that my brain is quite full of information and things I need to do and some days I think how am I going to get all things extra things done with Faith so that she can move forward even more. But somehow I do get there, but there are tears on my behalf with my brain being overwhelmed and thinking how can I manage it all but I do, even though I sometimes feel like I am not getting there. A sense of failure does appear but I know it isn't failure as such but more about me wanting to get more done with Faith and reading more so I can do more. Patience and some more patience...