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.

Sharing a yummy recipe - egg plant parmigiana

We got some organic veggies last week, home delivered from a local farm, very exciting! Included in the box of delicious produce was a egg plant and I haven't cooked with one before. I loved it and wanted to share the yummy recipe I found on taste.com.au

Egg Plant Parmigiana

Ingredients
3/4 cup plain flour 2 eggs 2 cups dried breadcrumbs 2 eggplant, trimmed, thinly sliced (see note) vegetable oil, for deep-frying 1 1/2 cups Italian tomato pasta sauce 1/4 cup grated tasty cheese
 
Method
Bechamel sauce
40g butter 2 tablespoons plain flour 1 1/4 cups milk 1/2 cup grated tasty cheese
0:30 To Prep
1:00 To Cook
4 SERVINGS

1. Make bechamel sauce Melt butter in a saucepan over medium heat until hot. Add flour and cook, stirring constantly, for 2 minutes or until mixture bubbles. Remove from heat. Slowly add milk, whisking constantly. Return pan to medium heat. Cook, stirring with a wooden spoon, for 8 minutes or until sauce comes to the boil. Remove from heat. Add cheese. Stir until melted. Cover surface with plastic wrap.

2. Combine flour and salt and pepper on a large plate. Lightly whisk eggs and 2 tablespoons cold water in a shallow dish. Place breadcrumbs in a shallow dish.

3. Lightly coat each slice of eggplant in seasoned flour, shaking off excess. Dip in egg mixture, then breadcrumbs, pressing crumbs on with your fingertips to secure.

4. Pour oil into a large saucepan until one-third full. Heat over medium-high heat until hot (see tip). Cook eggplant, in batches, for 2 minutes each side or until golden. Transfer to a baking tray.

5. Preheat oven to 200°C. Grease a 6cm deep, 18cm x 24cm (base) ovenproof dish. Line base with eggplant slices, overlapping slightly. Spoon over 1/2 cup pasta sauce. Repeat eggplant and pasta sauce layers 2 more times.

6. Top with bechamel sauce. Sprinkle with cheese. Bake for 20 minutes or until cheese is golden. Stand for 5 minutes. Serve with grilled chicken, lamb or pork.

Day 10 - No NG Tube - More Smiles

Faith is still tubeless, yay! And her pattern seems to be, eat more one day and eat less the next but slowly increasing in each days volumes so overall we are seeing a good volume improvement. But some of biggest challenges is that eating causes Faith to tire quickly but she is getting stronger. We had to cease weaning her medication, gabapentin as she was getting quite a lot of withdrawals from it and it was and is hindering her moving forward. The withdrawals appear to be change in temperature, irritability, and not being able to sleep at times. So, apart from what is going on with her body from having no NG tube, the poor little girl has to combat the gabapentin withdrawals. Faith hasn't eaten a lot of food orally in over a year and so the process of eating is tiring her greatly so she is sleeping a lot and at times over tired so not sleeping making it harder for her to cope. It is a crazy combination at times. 

Last night was particularly challenging with Faith waking for food at 11pm, 2am, 5am etc. So it has been a long day for us already. But she must have turned a corner as she is sleeping a lot more today in comparison to the last few days and of course in the back of our mind we have other causes of varying symptoms like shunt malfunction but her fontanelles are still soft and she isn't vomiting so I think it is just her adjusting to her new found identity of being a oral eater. It is a emotional roller coaster and I do long for our once 'normal routine' but less the NG tube so I look forward to finding another new 'normality' again.

We are still in touch with Faith's speech pathologist and it is wonderful to have her there if we need to brainstorm anything. Though it has only been a 11 days since we took Faith's NG tube out it feels like months have passed since then. I keep reading the quotes and sayings for encouragement and perseverance and find them a good reminder of the bigger picture and ways to handle various situations regarding Faith's approach to eating food orally, wow, she is really eating orally. Yay! 

I think we were all feeling a bit flat today after sleep deprivation and working so hard to make this work and it is working. I see Faith's tummy popping out more and I love it. A friend dropping over this morning, a mum with two little ones and what a great blessing it was, yes, she is sleep deprived too so when our minds wander we both don't really notice cause we are on the same page. It was good just talking about stuff and hearing about her life and what is happening as sometimes it can be hard when we don't have a chance to share others lives it makes one feel refreshed sharing in someone's else's life. She even brought us a home made bacon and egg pie and some eggs. How lovely. Then, later in our day we are invited to another friend's house for afternoon tea. My friend's little one had a NG tube and food aversion a while a go so she understands what we are going through. While we celebrated how Faith can eat now and as I was preparing the food she said don't be upset if she doesn't eat as much as she usually does as when little people go out they get distracted and don't eat as much. And that is what happened, Faith had a small snack and wanted to continue being involved with the other kids. Another special things happened that we haven't seen in a week or more, Faith started interacting with the other little kids, she laughed and watched and had so much fun watching them play and entertain her. Our little happy girl is slowly finding her 'normality' again. Thank you God for friends!

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#

21 Days of Gratitude - Day 21 - Gratefulness!

I can't believe that it is day 21 of 21 Days of Gratitude! It has been and still is such a good exercise and blessing to have a look at my life every day and find what I am grateful for. Since I started the 21 Days of Gratitude journey, I have looked at my thankfulness for friends, family outings, joy in rainy days, beliefs - faith, hope and love, a simple task to some but the joy being able to eat, celebrating my daughter being on a 100% blended diet and my garden. I know there is many more wonderful blessings of things, people and circumstances that I need to be more grateful for and share with those special ones how much they are a blessings to me. The last few days for our family have been quite challenging and will continue to be for a little while yet as we are preparing for our daughter to be weaned off her NG tube so there has been a lot of emotions and tasks running all over the place. But amidst the craziness of it all I can see my little girl getting stronger and more determined in her actions, saying no and learning to push things away she doesn't want and of course a learned skilled of vomiting up her NG tube. Of course, my husband helping us get what we need done to help her achieve this massive goal of becoming an oral eater once more. I am so grateful to have him by my side on our journey.

I hope that anyone who has taken a moment to read my blog has stopped to think what you are thankful for because there are many blessings all around us just have a look!

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 17 - My Garden

I love my garden, it is a place of sanctuary where I can go and relax. I see my garden from the dining room and lounge room and it is a place I look to for a brief escape. My garden is full of flowers of varying kinds and small trees, it is a haven also for small birds and butterflies. Since we haven't been in our house long I am still discovering what flowers and what doesn't and the longer I am here, the more flowers there is. I couldn't imagine having my garden any other way. I am so grateful for being able to water it as much or as little as I want and that I can have a little veggie patch too. It is my kind of place to be myself.

The magic tree!

Just felt like writing a little story about the magic tree outside our window!

As I lay in bed, drifting in and out of peaceful sleep, I hear a voice from the big old tree outside, it is a soft song and for a moment I am perched on a tree visiting the voices and beings that live there, my eyes are misty so it is hard to make out shapes but I see brilliant colours, the first I see are the contrasting colours of black and white and a face that is kind and I immediately feel the peace that everything is going to be ok. Not far away I see two faces that are grey and white and I feel immediately transformed back to my granny and papa's home that is warm and safe, but far above nearly out of sight, I peer and shiver as I see darkness and black eyes shimmering, a place I don't want to be so I look away and not far below me is a small family tucked up in bed asleep, all safe and sound and now I feel sleepy and slowly ever so slowly I drift back to sleep where I dream...

21 Days of Gratitude - Day 16 - 100% Blended Diet!

Wednesday
Faith is asleep and I have been wandering on the computer, writing, researching, planning and thinking. But every now and then I stop for a moment, what do I think? I am thinking about how right now everything is peaceful, all I can hear, is the oxygen concentrator, it sounds like a space ship, an alien sound to the ears but to me it is the now, the normal, laugh if you will, but it is quiet and for a moment my brain just wanders through time soaking up its own thoughts. Compared to yesterday I feel relaxed and ready to take on the challenges that lie before me.

Faith, my mum and I drove to Mullumbimby this morning, it is a 40minute trip and we drive along country roads and chat. It is a good chance to have good conversations with my mum and Faith talks every now and then but loves watching the trees go by but protests if we pass a truck or car that makes her feel threatened. Why do we make this trip, it is to see our nutritionist, the last time we saw her was in late August as she has been away. Our nutritionist is a blessing as she gives her time to us at a much reduced cost and researches areas she doesn't know about but we always seem to be on the same page, our minds seem to work in the same direction and it makes it so much easier. Faith is now on 100% blended diet but we are making to much volume in her blend so we are looking at ways to decrease it but still get the required amount of nutrition. It is so exciting to be at last on 100% blended diet. With summer already at our door step we discussed ways of keeping Faith hydrated, she is drinking water and we put water down her tube but she sweats so much with either pain, stressed, straining or just unwell. So we are thinking some electrolytes might be worth a dry. Apparently the kids version is full of not so good things so she gave me the details of a colleague who has a much more healthier version so we will see how that goes. 

 Last week in Brisbane we were discussing with the gastrointestinal doctor about probiotics and she suggested VSL#3. I looked up VSL#3 and this what I found out about it, it is a probiotic with the highest available concentration of beneficial live bacteria. Each sachet of VSL#3 contains 450 billion colony forming units (CFU) of live lactic acid bacteria which can effectively colonize the gastrointestinal tract.  It sounds really good and we need to get Faith's tummy some more friendly bacteria but it is so expensive in comparison to the other varieties so I think we will have a bit more of think about it. One of our biggest concerns at the moment is keeping Faith UTI free and it is proving a challenge. The antibiotics are killing the infection but killing the good bacteria and then when she finishes the antibiotics the infection comes back so it is quite a vicious cycle. We thought we would try cranberry juice and so I looked for it in many shops and apparently at the moment there is a shortage of cranberry juice, something we really need and we are unable to get. I ordered some on the internet so hopefully that will work out.

I am so grateful that Faith is taking to drinking water so well, she is even trying to lift the cup to her mouth and looks at it when she wants more. She is tasting small amounts of carrot, pear and apricot purees on the cup and that is wonderful progression. I am so grateful to have people like our nutritionist and speech pathologist around to help us make Faith stronger! We have so many things to be thankful for.

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!

21 Days of Gratitude - Day 13 - Faith, Hope & Love

When we were in Brisbane recently, there were small pillars of rock with the words, faith, hope and love. Each space had remarkable stories of faith, hope and love. These words of so much meaning. To me, faith means, believing in what is not seen, so for example, I believe in God, how can I hold onto something I can't see? that is what faith is. I see God all round in his creation. I know he exists, it is the feeling inside me too. Faith gives me hope to continue to go on, without hope I could not continue on in life as there would be no purpose. Love is the basis for life, without love there is no passion for various things in life, I have a great love for my family and my God. So as you can see these words are full of deep meaning. What do they mean to you?



 

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails." 1 Corinthians 13: 4-8

21 Days of Gratitude - Day 12 - A Rainy Day

Nothing like a rainy day at home with the ones you love. A sleepy old day with naps, hot green tea and sitting outside on the swinging chair watching the rain drops and the thirsty earth soak up the water. We have been in our new home for just over 2 months and this is the first wet days and I am loving it, we use to live in flood area and we don't anymore, no more fear of waters rising and having that panic thought what I have left when the water runs too. We are truly blessed to have our home that is dry, cosy and a haven to hide the from the rain. The weather is cool and refreshing, I am soaking it all up! A break from the summer heat.

We had some beautiful bird visitors on our bird feeder, we have been teaching Faith the sign for bird and what a better way to demonstrate it with so many varieties of birds visiting our backyard. What do you love on a rainy day?

King Parrot

21 Days of Gratitude - Day 11 - Family Outings

We headed back to Brisbane for Faith's check ups and overall it went really well but the highlight for all 3 of us was our trip to Southbank. Beautiful weather for those couple of days. We are so grateful for Faith's doctor's and the ability to have access to such supportive and knowledgeable doctors. We couldn't get better treatment for Faith. The Brisbane hospital is so very close to Southbank, it is our sanctuary from all the appointments, the questions, the assumptions, at Southbank we are a family out to explore. We always manage to visit our favorite restaurant where the manager has shared our journey from Eleanor's birth as we have gone there for meals and we each share a bit of our lives. Can't forget our new thing of visiting Max Brenner Chocolate Shop. Faith loves being out, watching the people, seeing new things and having a break. This trip we went to the QLD State Library. We aim to have some fun adventure together so that we all have something to work toward particularly Faith after being poke and prodded.


Here is some pictures from our Southbank adventure

Beautiful gardens and walk ways

So many contrasting colours

Our favorite chocolate shop

Attractions of Southbank

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! 

 

21 Days of Gratitude - Day 6 - Friends

 I was roaming the internet yesterday, reading blogs and I came across 21 Days of Gratitude and this is what it is, "there are over 21 bloggers who have joined forces because they believe that gratitude can be contagious and desire to spend this month being grateful with their families.  Each day a different blogger will walk along side of you in this challenge and share their experience. Stop by and visit their website on the date listed on 21 Days of Gratitude to read their Contagious Gratitude story or activity".  

What a fantastic concept and the more I thought about what I am grateful for, the more I wanted to be part of it. I am joining on day 6 but that's ok too, the more the merrier as that what it is all about. 

What does gratitude mean?

It means the quality of being thankful; readiness to show appreciation for and to return kindness.

Yesterday afternoon a dear friend turned up and brought me a series of 3 paintings she had done, as I had mentioned to her some weeks ago that I had a naked wall above my dining table that needed some artistic expression, I said I like swirls! 

And here is my own collection of swirls from a dear friend!