Resources for becoming NG tube free - Cups and Spoons

It took us so long to get together all the different resources we used to help get Faith off her NG tube and to keep her from going back to it. We took her NG tube out on the 29th November 2012 and below is some cups, spoons and plates that is helping us in our journey of staying NG tube free. We have a amazing speech pathologist who supports us and provides us with so many of our resources. She is such a blessing to us. We have modified the spouts on most of the sippy cups and removed the valves so she doesn't have to suck as she isn't able to do that yet. Her favorite for a long time was the NUK cups in different colours, yellow, blue and green. We are still struggling to get Faith to eat from a spoon but we are working on it. She used a spoon for the first few days after we took her NG tube out and moved onto the sippy cups maybe because the spoon used to much energy and drinking the blend allowed her to get more energy and not use as much to do so.

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

A Catch Up - Tube Free

It has been a while since I blogged, I don't usually leave it this long. The reason being is life has been quite crazy for us. The wonderful aspect is Faith is still tube free and is talking more (new sounds, that I hope will turn into words soon). It is a hard road feeding Faith, she still won't take food off a spoon or through a sippy cup, she insists it has to be through a syringe. It is much better of course than through a tube but hard work as she still doesn't eat a huge amount. I have to keep reminding myself that it is thought that tube feed kids are 30% overfed so I need to remember that. I always thought Faith was overfed from the moment she was born but as she was in NICU and I didn't get a voice in that regard, I just had to trust they knew best.

I can't believe it has been only just over 4 weeks, feels like months and months. Faith no longer looks like she is losing weight which is a wonderful wonderful blessing. Her tummy is filling out very slowly. Still haven't been brave enough to weigh her as by doing so it isn't going to change anything but stress me so I will wait a bit longer. Faith currently has a UTI so she has been feeling rather unwell and it has affected her eating but she isn't vomiting and that is a big blessing. The weather here has been so hot we haven't managed to get out, hiding away in our air conditioned comfort. Don't want to take a chance with Faith getting dehydrated. I know Faith would love to get out and so would I.

What is Faith eating? She is eating her blended diet with a few supplements added and some extra fruit puree to give it a yummy taste. She seems quite happy with it. She isn't that keen on tasting new foods but we are still trying. I really hope she will soon try some other yummy food so she isn't always eating the same thing. We are treating her UTI with antibiotics and starting doing in and out catheters just while she has the infection. If we do it all the time it increases her infection rate. Faith isn't eating much when we go out so that is a area we need to work on too. But for the moment we will just keep concentrating on eating and having fun.

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 20 - No NG tube - Patience

Wow, nearly 3 weeks since we took out Faith's NG tube. It feels like it has been months and months. Some good news is that Faith has slept through two night's in a row and is more happy and willing to play more. She looks better and is stronger. Faith is being her cheeky self and definitely asserting what she wants at the moment, she doesn't want food. The UTI is going to play a part in her not taking food but it doesn't make it any easier to handle her rejecting food. She is eating a very small amount but just not enough. To keep moving forward we have introduced the spoon again in the hope that soon she will move on from her spoon aversion. Feeding dolly and the puppets are part of the routine to help her learn. We have a wonderful selection of spoons and cups, all different sizes, colours and textures. 

Faith is taking her medications wonderfully at the moment, we just squirt them into her mouth and it is done. So easy! All we needed was to to trust Faith that she would take it and get used to that part of her routine and she is doing great with them. The medications taste horrible too so we are very proud of her.

We are using a visual time table and then have the pictures from the visual time table stuck around the house, the bathroom door, TV, playroom, change table, all those sort of places. I think in time it will help her communicate better but it is patience that we need right now. Patience that Faith will eat soon, patience that we can do this and patience with each other.

Day 18 - NG tube free - struggling!

Sorry it has taken me so long to come and update what is happening with Faith but my days have been a great struggle, emotionally and physically. Some days just not feeling like they will end. This is where we are up too. We have been going up and down in volume of blended diet and were progressing well and a few days a go we hit a real low where she refused food for 24hours straight. It was hard being patient but we had to, it is after all Faith's choice. With Faith's intake of food crazy to say the least we get up many times a night sometimes she will eat huge amounts other times she refuses. We have also had a trip to Brisbane to get bigger AFO's and leg wraps and also had a catch up with the speech pathologist. 

One of our biggest challenges over the last week has been getting Faith to take her medications. When she doesn't take them it does set her back and make it harder for her to move forward. As of yesterday we have solved that problem, previously we couldn't get Faith to take her medications directly into her mouth we had to disguise it in her food. Now she has decided she will take it straight out of the syringe so that is one less burden to carry and a wonderful relief knowing she is getting the right dose of gabapentin and keppra.

Another challenge we are facing as of today is that she has a UTI which explains her refusing food the last few days and her extreme irritability. It always seems to happen on the weekend. Luckily we have some antibiotics on hand just in case. At least we know what was causing it but it doesn't make it any easier when she refuses food. I just see her thin body and my heart aches and my mind struggles to keep going but knowing that she is so much better since coming off the NG tube but the process of sorting this all out it far and above harder than I imagined. Thankfully she is taking her antibiotic straight in her mouth and being very brave about it. I love when she smiles or reaches out for me, my heart leaps for joy. So, that is where we are up too, still offering and offering and doing our very best to be patient with Faith and let her get there when she is ready. She will get there it is just a bumpy ride until we do.

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 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.