Emma's Achievements

As we are approaching the end of this roller-coaster journey we have been travelling for the past 5 weeks, I thought I would list and celebrate some of Emma's achievements.

She certainly has made HUGE steps forward and we are so happy with the progress she has made.

Feeding Achievements

• Crunching on delite crumbs
• Sitting at a table with food and not being fussed
• Almost trying raspberry lemonade
• Drinking ready-made pediasure
• Licking salt and vinegar pringles
• Rubbing unpeeled fruit on her face and licking it
• Tolerating biscuit crumbs on her hands
• Able to spill water on her clothes and no longer freak out
• Playing with cheese and rolling it into balls
• Doing lipstick fruits
• Holding pepperoni meat sticks in her hands
• Mixing cereal and milk together
• Buttering and putting jam on toast

Physical Achievements 

• Swing on a zip line
• Walk along a balance beam
• Put her hands in bubbles and water and make play
• Climb a cargo rope
• Jump into a ball pit
• Walk on a wobbly board
• Crawl through a dark tunnel
• Ride on a skateboard
• Hit flashing lights and react to sound

Tolerance Achievements

• Put hands in bubbles and wipe across tables
• Play with smelly foam
• Put fingers in sandy liquid
• Can handle a wide variety of smells and strong aromas

Some of these do not sound very important or impressive, but for us they are MASSIVE milestones and achievements for Miss Emma.  We are very proud of her and I hope to add more to her list of sensory achievements as we approach graduation from Food School.

The Wiring of the Brain

One thing that we have been taught while here is the wiring of the brain - especially in children who were born prem.  This is not the greatest of pics but....

This shows the seven senses of the brain.  We all know about the main five, which are smell, taste, hearing, touch and sight, these are also known as the external senses.  The other two are another two big ones.  Balance (or if you want to be technical "vestibular" sense), and Body Awareness, which uses that word we have mentioned a few times, proprioception.  

So all these senses work together and are always decoding and processing information that we are receiving from all our senses.  All these sensory inputs allow us to understand the world that we are functioning in.  But if one of these senses is not working properly, or the wiring has not been completed properly (due to premature birth), it can be a struggle to decode and manage the sensory input, and create sensory issues.   These can manifest in three different ways, the over-responsive child, the under-responsive child or a sensory seeking child.

Normally, all these senses are wired up and properly work.  Our brains are firing hundreds of messages around without us even being aware of it.  We pick up a piece of food, and within split milli-seconds, it has hit all our senses before we have even put it in our mouth.   

With a premature baby, they have missed out on those weeks of floating around in a lovely warm bath.  A full-term bubba enjoys the muffled sounds of the outside world.  Working out how to swallow the warm liquid, move their hands, suck their thumbs and just oblivious to the madness and chaos of the outside world.  They float around blissfully unaware of it all.

For a precious prem, they are burst into the world, and subjected to hundreds of different sensations, touch, feel, sight, smell, taste and hearing. Their little brains are not wired up yet to cope with all these sensations.  As a parent of a prem, you will know that you have to keep touch to a minimum.  They cover the incubators with blankets, muffle the sounds and dim the lights where possible.  Unfortunately it is the nature of the beast - that all these interventions that are keeping our babies alive, are also overwhelming their sensory systems.  Saying that, we dont mind because we would do anything to keep our babies alive.  It is also not the fault of the medical teams, they do the best they can.

But in knowing this, when prem babies leave the hospital and start to explore the world on their own, it is important that they have an excellent support network around them to pick up if their sensory systems are not wiring up correctly, or if something is not quite clicking.

Unfortunately there is often not the follow-up that pick up these issues.  Also, through no lack of the specialists around, some of them do not have the proper training to pick up on these issues.

But anyways, the past few weeks, Emma's therapists have been re-wiring Emma's brain.  Starting at the very basic sensory feelings, and working up and up and up.  This, combined with the steps to eating, is helping Emma's brain to start connecting up and making the connection that food is good, and that she is a girl who is learning to eat, not a girl who does not eat.   

Snowed In

Just a change of pace for a post - will have lots of time to update the blog over the next few days....we are snowed in and there is no clinic today....

There is already a good foot of snow on the ground and more to come... its supposed to snow and blizzard all day today and tomorrow - and snow on Sunday as well.....

The kids are fascinated watching the snow fall from the sky.... we are in the middle of the biggest snow-storm that Denver has had for over 100 years.... LOL.... and we had to be here... hahahaha

Anyways.. just some pics for you

Our apartment window - nearly at the ledge

The Pringle

We had a very successful food school session this week.  As I have mentioned before, we are busy teaching Emma about how food can change by smell, colour, shape and texture, but still basically be the same.

So we had a lesson that was teaching our nose, eyes and mouth. 

We first started with her favorite, salt and vinegar delites.  As you all know, she loves those biscuits and will lick them ALL day if we let her.  She was busy licking and tasting and enjoying them very much.  Lainy and I were also busy licking them - its a POW taste.

Next we moved onto a chex biscuit - salt and vinegar flavour.  First of all Emma freaked out, but then we started to teach her nose, it smells the same as the delites, even though it looks different.  "Dont let it trick your eyes" Miss Lainy keeps telling Miss Emma.  But she was not happy with that biscuit.  So we took them away.

Then out came the pringle.  It is a BIG biscuit.  It can be overwhelming for the eyes.  And they were salt and vinegar flavour, so WOW, different shape but same smell.  "Dont let it trick your eyes" - "How about we teach our noses?"  Miss Lainy was pusing it a bit because she did not freak out so much when the pringle arrived on the table.

We smelt the pringle, hmmmm... BIG smell.  But hang on, I have salt on my fingers.  Ohhhh.... looks different, smells the same and puts salt crumbs on my fingers like the delites do.  Lets now teach the mouth

And she was off.  

So this is a massive acheivement.  So salt and vinegar pringles here we come.  WAHEY!!!! ...

The next thing we moved to was breakfast cereal.  It consisted of brightly coloured cereal balls.  A completely different smell, different colour but they were crumbly and textured on the outside just like her delites and the pringles before.  She then had to sort them into different colours. She coped very well with this exercise, but soon started to shut down due to the overwhelming  colours.












Next - we moved onto pudding.  Something of a completely different texture and food item - but linked to the pringle by the colour.
Here we are going to teach her not to let her eyes and nose trick her.  Emma spooned pudding into three containers and then picked three very different essences.  She chose peppermint, vanilla and coconut.  She then proceeded to place a few drops of essence into each container. 

What she was learning here is not to let her nose trick her eyes.  BIG smell, but everything still looked the same.  All three of them smelt different, but they were the same.

This was a very successful class.  Emma did not become overwhelmed or shut down at all.  When she started to withdraw Lainy drew her back and away and took the foods away.  I also am starting to learn to read the cues of Emma when it becomes too much.

I hope from this you can see what they have been teaching Miss Emma.  They have now the groundwork for Emma to start the biggest step in her life.  To start eating foods.  She knows that her eyes and nose can be tricked, but not to let them.

The next few days are going to be VERY exciting.