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.  

Going Fishing

Today Emma had a massive day at the STAR centre.  It was back to back sessions - which last week she struggled with - as it was sensory overload.  But not today.  I wanted to share with you her fishing expedition and see how they work with her many senses and give her complete body sensations and work on proprioception.

Her first challenge for the day was to climb up the tree-house and using the zip line crash into the ball pit.  She was a bit nervous at the start as Miss Nikki would not be holding her waist, but Emma problem solved her way through it, by searching for a soft landing mat to put on the first level of the tree house.

 Seeing her problem solve her way out of this dilemma was fantastic.  She is starting to learn her words to tell us how she is feeling, and to help her.

She went flying down the zip line and crashes into the ball pit.  The ball pit is excellent source of whole body stimulation.  It also helps build up strength as you swim through the balls.  Also, the colours helps lower her sight stimulation - so it works on many different levels.

Once she had crashed into the ball-pit it was time to climb on the boat and start fishing.  She had collected the worms earlier by scooping them out of a mixture of water and sand.  This also works on a sensory level as she is learning about how to cope with wet and dirty stuff on her hands.  She also had to problem solve her way out of having her hands sandy.  She did very well with the help of a spray bottle of water.  But back to the fishing.

She had to row out to the deep ocean blue, and lower her bucket into the water. AND.... lo and behold, she was catching fish.  They were attracted to her worms in the bucket.  

Climbing onto the boat

Row, row row the boat

Pretending to snooze

She had to haul the bucket up (there were knots placed in different positions along the length of the rope to give her some resistance to help with muscles) - then work out how to get the fish out.  

First... she just wanted to whack it out with the oar - but that did not work, so she had to climb up the side of the ball pit and balance to get the fish out.  She did very well and four fish were caught in all.

Then, for all of you who know Emma, know that she has a very vivid and active imagination - and they do let her imagination rule these sessions (they have discovered that if they let Emma's imagination rule her therapy and feeding sessions - she stays more relaxed and less stressed).  She started to make the shark noise... du dum du dum du dum - OH NO.. there are SHARKS in the water.  They are wanting to eat all our fish.   Miss Nikki then used this opportunity to work with Emma with another texture and source of massage.  "Lets make shark repellant lotion".  By using her smell and sight, Emma chose two lotions that would help repel the sharks and Miss Nikki massaged them into Emma's hands and feet.  (As you know smell is another sense which they are also tackling). 

Once they were both safely ashore, they then fed the fish to the giant green serpent.  (Emma sits inside it - it is a tunnel with a hole at either end, so she would take the fish and then crawl to the end of it) .

It was a session that was filled with lots and lots of sensations, body strengthening exercises, an assault on all her eight senses, and she came out the other end happy, relaxed and not stressed. 
Also, very keen to see Miss Lainy for Food School.  (Last time she did not cope with it at all).  So all in all, a very successful therapy session. 

We can see her balance, strength and bravery growing every day.  Also, her tolerance to different smells and textures is also increasing.  They really are doing a wonderful job.

The Steps To Eating - and Where Emma is

I have mentioned before that there are 32 steps to eating .. so I thought I would list them...

TOLERATES

• being in the same room
• being at the table with the food on the other side of the table
• being at the table with the food 1/2 way across the table
• being at the table with the food outside of the child's space
• looks at food when directly in child's space 

INTERACTS WITH

• assists in preparation / set up with food
• uses utensils or a container to stir or pour food/drink for others
• uses utensils or a container to stir or pour food/drink outside of own space
• uses utensils or a container to serve self onto own place/space

SMELLS

• odours in rooms
• odour at table
• odour in child's forward space
• leans down or picks up food to smell

TOUCH

• one finger-tip
• finger-tips, finger-pads
• whole hand
• arm, shoulder
• chest, neck
• top of head
• chin, cheek
• nose, underneath nose
• lips
• teeth
• tip of tongue, top of tongue

TASTE

• licks lips or teeth
• full tongue lick
• bites off piece and spits out immediately 
• bites pieces, hold in mouth for "x" seconds and spits out
• bites, chews "x" times and spits out
• chews, swallows some and spits some
• chews, swallows whole food with drink
• chews and swallows whole food independantly

THEY ARE EATING!!!!! ... YAY


Some of the touch comes before smelling, but it is important they can tolerate strong smells...


Emma is slowly working her way through the heirarchy.   

Emma already achieves the "eating" stage through her formula drinking - we just need her to start eating solid foods..... 


She tolerates orange juice being at the table with her - but outside her space.

She interacts with soft cubes of food by using fingers or utensils

She is still very hesitant with hard food that shatters - but she can interact with it at the lowest level.


She is in the touch area with purees and fruit/veg with skin on - and that she has shown massive improvement.  She will lick skin on fruit and veg, and will put her whole hand into puree.


The big goal with Emma is to strengthen her visual system so it does not hold her back - so that she can tolerate foods of different colours, shapes, texture etc.


As we work through the heirarchy steps of eating we are also working on

1. getting her to trust all adults who will help her interact with food - that no-one will ever force her to eat something she does not want to;
2. Getting her to identify and express her emotions, so the adults present can help her process the feeding issue;
3. Need her to build her sensory and emotional problem solving skills
4. As adults, we need to make sure we build structure and success around eating
5. And the big one - make her know that "she is a person 'learning' to eat, not a person who does not eat.

So there we go... now you know what we are aiming to do with every class and lesson we attend. 

Our New Food Routine

So much information to get across.  We had another family food school yesterday, which we passed with flying colours, though we still need to work on increasing the positive feeding experience.

So now we are well and truly working on our new eating schedule.  The boys are finding it a bit difficult - Jazz is loving it cos he is eating ALL the time.. hahaha... and sometimes it feels like we are constantly feeding but we are already seeing positive results.

The goal of the meals is for Emma, James and Jasper to eat a good volume of their preferred foods , but also for them to learn about other foods, either new or not preferred.  At every meal and snack, we have to give them one protein, one starch and one fruit/veg.  It is a lot easier than it sounds.  They can have a snack of tiny teddies or crisps, so that can be taken as a starch.  Same as chocolate cake - that is their starch.  Also, they are NOT allowed to snack outside feeding hours.  But since children are supposed to eat every two and a half hours, we are not having any issues with that.  Of course, if they dont fill up at their meal time, they can get hungry but they have to learn. 

So our new schedule (of course when we get home and start diving into the day to day routines of school and kinder we will have to change it) is eating at 8.30am, 11am, 1.30pm, 4.00pm, 6.30pm and 8pm.  In between meals they can have water only.  At the end of the meal they are allowed to have a high calorie drink, such as juice, or in Emma's case - her coke - but she gets offered her formula at the meal time.  We need her to be drinking it at every meal time - her body needs to start recognising that is her meal times - because - her formula is her meal.

Our learning meal of the day is 6.30pm.  That is where we learn about the learning plate - and we do a bit more interaction with the food.  We also play the special clean up game.


5 minutes before we serve up, we warn the children that we will be eating shortly.  We then start doing some movements, or what the therapists call "Postural Activation Exercises" - to warm up the big body.  They can run around and march.  We also get them to move the foot stools to the sink to give them some pressure exercises.  


The next thing we do is we say "It is time to wash our hands now" (dont tell them that it is time to eat).  Use the hand washing as a sensory exercise by using different soaps, water temperature, different sponges or flannels, or brushes.  We then all sit at the specially prepared table (with food in the middle and learning plates).


We then do the family serving style, where the child can help themselves to as much or as little as they want of each bit of food.  Either goes on their eating plate or learning plate.  And then we eat.  Yum yum.


Once the eating has slowed, we then move onto the learning plate (of which I have talked about in earlier blogs).  After that... FUN clean up game starts.  


It can be exhausting - but we are seeing results.

Occupational Therapy

Emma has intensive Occupational Therapy every day.  Her classes involve everything from gross motor skill work such as running, jumping, swinging, sliding, playing in a ball pit - to fine motor skill work and messy play to help with her desensitisaton.

For the first few sessions, they were using musical therapy to help calm her down and keep her focused.  Here she is with her head-phones on. She wanted the pink head-band.  

  

 

This particular therapy class - we were busy baking for a surprise party for the toy cat.  As you can see, Emma bought her friend "Mitzy" along for the party.

It is an important factor with OT to help Emma learn the words to ask for help so we know when things are upsetting her and making her anxious.  And of course, the messy play helps with the desensitisation.

We did LOTS of messy play in this session

As you can see, lots of messy play.... she did wonderfully well with this session.  Nothing overwhelmed her too much and it was marked down as a success. 

The Big Lick

To be honest, sometimes it seems like we just dont get anywhere.. and THEN.... Emma does something that completely blows us out of the water.

Our food school today was about colours and food.  We are trying to show her that her eyes can be tricked, but it is still the same piece of food.   It might change colour, change texture or change shape - but dont be tricked - its still the same.

Our first item for the day was mandarins.  And just look what Emma did.

 THREE CHEERS FOR THE STAR PUPIL - MISS EMMA 


Anyway, we were very happy with this, but it was not the end of the session.  Food school today revolved around injecting different food dyes into mandarins and seeing how they change colour, but are still mandarins.  Still smell, taste and feel the same, but are just different.  Tricky on the eyes isnt it. -)

Injecting in the dye

It took a bit, but Emma was a very enthusiastic helper. As long as no colour got on her.  But she had her wiping cloth so all good.

Look at that... still mandarins - just different colours.  Of course, it was not without stress, but Emma worked through it and between her and Lainy worked out a coping strategy for her.

Her coping strategy - cover the eyes - thus limiting being over-stimulated by colours

Squeezing juice into a cup

The last exercise before clean up, was to get Emma to squeeze the mandarins, to see, yes it is the same, just different colours.


A very successful session.  WTG Emma! .