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!

 

 

Feeding, we can do this!

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

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

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

Let's just do it!

We all have been working really hard on Faith's feeding program and after a week break due to Faith being so unwell and speaking to the speech pathologist on Thursday we decided that we should up the pace and see what we achieve as we don't want this NG tube anymore. So on Friday we began, first thing when Faith arises I give her a water bolus down her NG tube but thought why don't I try and get her to drink the water instead and then just put the remainder down. She took the water quite happily, not a huge amount but a start. Part of the change is programming not just Faith to eat and drink orally but also us. For over a year now we have been tube feeding and now I need to re program myself to push oral first and it is a big adjustment. I am excited about it and just want to get on with it. I thought to help us all get into a routine, we will have a 'normal' feeding time, water and eat together at breakfast, then at morning tea, I offer water again and she did really well, trying to lift her sippy cup to her mouth and when I wasn't looking tipped it upside down on herself. Cheeky monkey. 

Faith sleeps through lunch time so we skip straight to afternoon tea and I offer water again and eat with her and she seems quite fascinated, good I think. Late afternoon is the tricky time as Faith has her energivit formula and it does upset her tummy, so made us think about whether to increase her blended diet and try and remove the energivit formula in the afternoon. So, Friday evening we have a family dinner of tacos, self serve so Faith doesn't feel pressured, she plays enthusiastically with her plate but isn't that keen about having food on her plate. We have lit candles, the candle setting on our table has a tiny bird that appears to circle the tea lights so Faith knows dinners are special and a time for family. We only had one vomit on Friday and that was as soon as she woke up in bed otherwise she was fine. Faith really didn't want to brush her teeth so after she had done so very well with all the water we decided we wouldn't push her. Tomorrow is another day! So that begins day 1 of let's just do it. I look forward to tomorrow and how we will progress.

Blessings!

I have been thinking about what is joy? I think joy to me is many little things and the appreciation of life with my husband and my daughter and how many blessings there are if I just look. The reason I have the name of Joy, my mum and dad said, is that I brought them joy. The word joy has many meaning's to me, my birth mother has the middle name of Joy so as you can see joy has many meanings to me. There are so many blessings and such beautiful ones if I just look. Yes, we have bad days that sometimes feel like they might not end and my way is cloudy. But I have never questioned why me, but more I don't understand, deep down knowing it will all be ok. Maybe not my ok but God's ok. What is joy to you?

 Joy is defined as 

Noun:

1. A feeling of great pleasure and happiness.
2. A thing that causes joy

And that is what this week has been to me. Faith has been well, she might not have slept very well during the night and I have seen many sunrises and stalked birds for photos in my PJ's, but the majority of the day, she was well. Not too many vomits but giggles and pushing her boundaries. 

It is all the little things that bring JOY to my day, when Faith signs 'up' and then says 'up' and when she mimics my hand movements or when we are driving down our avenue and she says 'mum home'. Or that moment when we were on a play date and Faith has her first 'pretend' tea party and when another little girl just wants to play with her and show Faith her dolls. It is moments when she says new sounds, gives me a big hug, or when she snuggles into my husbands shoulder or Faith shares a secret with teddy and she is giggling away. These are the times that brings me indescribable JOY, Faith is a blessing from above!