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!