A Down Day!

I have been sitting here a while, thinking about the best way to describe my day and how I feel. Today is my down day. Faith has a UTI again, the 3rd one in not many weeks. My heart breaks to see her sad and sick. Of course we treat it with antibiotics again and they in time make her feel sick too but she is tough and we all will get through it again. I received a text from a dear friend and she encourages me to keep going. What a blessing to have such friends! 

Here is the lyrics to one of my favorite songs at the moment.

No Other Name by Emu Music
There is no other name
In heaven can be found
Through whom we are redeemed
Through whom your grace abounds
No other name can save
But Jesus Christ our Lord

Chorus
My joy in sorrow’s tears
My strength to cast out fears
No other name but Jesus, Jesus
My hope in darkest night
My broken soul’s delight
No other name but Jesus, Jesus

2. There is no victory
But Jesus crucified
No other cure for sin
But that our Saviour died
No other hope we have
But that he rose again

3. No other throne endures
No other song remains
But ‘Worthy is the Lamb
Who was for sinners slain’
When every knee shall bow
And tongue confess you are Lord,
You are Lord

Resouces helping us with feeding - music and books

Justine Clarke's Website

I thought I'd share some of the resources that we have found a real blessing on our becoming tube free journey. Firstly, music and books.

To make eating fun we made a list of music that was about food, as Faith loves music. I got them from the itunes store.

Watermelon - Justine Clarke

My Food is Made from Sunshine - Jay Mankita

Mrs Knife and Mrs Fork - Justine Clarke

Jelly Jelly Jelly - Justine Clarke

Hot Potato - The Wiggles

God Made Food - Karyn Henley

Fruit Salad - The Wiggles

Food Food Food (Oh, how I love my food) - The Wiggles

I'm So Hungry - Playschool

Food Poem - Signing Up Presents Sign-along-sings

Food Gives Energy to Me and You - The Body Rocks

The Food Trying Song - Words that Rhyme with Orange - Ross King

Hey Food - Sesame St - Sesame Rd Vol. 2

Banananana - Surfer Jeff - The Wiggles

Mango Walk - Surfer Jeff - The Wiggles

I love Oranges - Surfer Jeff - The Wiggles

Let's have a barbie on the beach - The Wiggles

Let's make some rosy tea - Wiggle Bay - the Wiggles

Polly put the kettle on - Racing to the Rainbow - The Wiggles

Wash your hands - Let's Eat - The Wiggles

Friday is fish day - Let's Eat - The Wiggles

That is what you call digestion - Let's Eat - The Wiggles

Clean your teeth - Let's Eat - The Wiggles

Cook Captain Cook - Let's Eat - The Wiggles

To Have a Tea Party - Getting Strong

Vegetable Soup - Whoo hoo Wiggly 

Gulp Gulp - Woo hoo Wiggle

Teddy's bears picnic

Ch...Ch...Ch... The toothbrush song - Playschool

Singing in the Kitchen - Oomba Baroomba Playschool
 
Books about food

Available from The Book Depository

Food - Published by The Book Company - ISBN 978-1-74202-419-6

My Very First Book of Food by Eric Carle - ISBN - 978-0-399-24747-7

The Very Hungry Caterpillar by Eric Carle - ISBN- 0-399-21301-5

Spot Bakes a Cake - by Eric Hill - ISBN- 978-0-14240-329-7

My Food - A First Word Picture Book - A Campbell Big Board Book - ISBN - 0-333-68363-3

Out and About - At the Supermarket - ISBN - 0-7105-0418-7

 Adam's Apple by Richard and Marcia Vaughan - ISBN - 0-86788-194-1

Available from The Book Depository

How did that get in my lunchbox? The Story of Food by Chris Butterworth - ISBN - 
978-0-7636-5005-6

The Teddy's Bears Picnic by Jimmy Kennedy - ISBN - 0-216-92270-4

Possum Magic - by Mem Fox - ISBN - 978-0-152-63224-3

A Catch Up - Tube Free

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

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

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

2012 - In Review

What a year it has been! There has been twists and turns, down roads and paths we hadn't intended but we have God willing made it through each second, minute and hour that lead into days and months. There were times when I felt I might just sink but here I am still going.

Some highlights of the year!

Faith hasn't been in hospital for over 13 months

Faith can now go without oxygen when she is awake. Yay!

Faith got her sting ray R82 pram and the squiggles standing frame

Another great achievement is Faith has halved the medication she takes and will soon be on none.
 
We sold our high set house and bought a low set house, now we can easily play outside and go out with ease. 

We also get to go to more social outings and play dates and that is WONDERFUL!

We have met some new friends and enjoyed spending time with old ones :)

The biggest news being that Faith has no NG tube and is eating orally, though still having struggles with eating, but we are making small steps forward and that is the most important thing. We have so many things to be grateful for and so many blessings. I wonder what great and wonderful things will be in 2013!