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