My biggest cheerleader – Matthew

Thank you to my brother who has been kind and supportive.  He was very upset when he saw my brace and he has been very worried about me.

Since I got home he has been very kind to me.  He has been trying to help as much as he can, by delivering things that I might need.

Sometimes he is not exactly helpful because he does something that he thinks is helpful but it’s not, like moving my wheelchair to a difficult spot.

I know he has been trying his best and I am very glad that he is trying to help me.

Settling in

Coming home was difficult.  Some of the passage way was not wide enough for the wheelchair and it was challenging to move around, but I have adapted to it.

Mum had to move some of my stuff around and she also had to move toys out of my room.  We had to change the way I sleep so that Mum could lift me from the right side.

For most of the day I sit in my wheelchair and read.  Sometimes my back gets sore and I have to lie in my bed.  I am glad that I still have my friends visiting me even though I’m home because sometimes it gets a bit boring.  I have also played board games and done some crafts.

The hardest part is getting to the bathroom but we are managing.

Mum has had to cut some of my clothes and tie ribbons on my left hip so that I can get them over the frame.

Today Mum wants me to start doing some schoolwork.  I really miss school because I miss my friends.  I’m hoping to be back next week if I can move around without help.

Iceblock Niceblock

On Friday morning I went to the gym and had a try on the crutches with the physio.  I was a bit wobbly to start with and it felt difficult, but I am slowly getting better.

After that I went to get an iceblock with Mum.  We went down through the tunnel to the Auckland City Hospital.  I got a wildberry flavour.  It was nice to leave the room.

When we had finished we went back to the room and Brigette and Bea came to visit me.  Brigette read me The Mysterious Benedict Society.

When they had gone I had my pins cleaned for the first time.  The pins are the things going into my leg.  It was very painful getting all of the bandages off and cleaning the pins.  The nurse was upset about having to hurt me.  I took deep breaths and listened to music whilst reading a book.

That was the last thing I had to do before getting discharged.  I watched the iPad while all the forms were filled in and Mum went to get my prescription for my medicine to take home; paracetamol and ibruprofen.

I was excited to go home.

We visited Nana on the way home because I wanted to see her and she finds it difficult to walk through the hospital to see me.

Getting into the car was difficult.  I have to sit in the middle where my leg can stretch forward.  I have to sit on a soft cushion.  It was sore going over bumps.

It was nice to sleep in my own bed on Friday night.

Loved by lots

Thank you to all of the people who gave me gifts.  I have enjoyed each present and they will help distract me when Mum is doing the pin cleaning or I am bored.

The Sussman family gave me bag of little gifts for ‘horrible things’.  I open one whenever something horrible happens.  The most horrible thing is getting my pins cleaned.

When I saw EROAD and ASB’s gift baskets, I was really surprised.  The colours of the bows made me feel happy.

I have also had lots of visitors.  They have kept me company in hospital and now at home.  It’s nice to know that there are lots of people who care about me.  Thank you to everyone who has visited me and helped look after my family.

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Getting up

Yesterday the physio came to see me.  She said that she wanted to try me on the walker to get around.  I was excited to get out of the bed.

When the walker came in and it was time to get off the bed, my leg hurt.  When we managed to get me onto the walker, I started.  I walked all the way out of the room and along to the bathroom.  Then I walked back.

When Mum tried to put me back on the bed it hurt.

Later, the occupational therapist came in with two different wheelchairs.  She took some measurements.  When she came back she had some pieces of foam to make the wheelchair fit me.

When Mum moved me onto the wheelchair it hurt.   I had more foam put under my foot to make it comfortable.  I sat in the chair for about 10 minutes, but I felt tired so I asked Mum to put me back in bed.  I watched Netflix for the rest of the afternoon.

Later that night I had another go on the walker.  It didn’t hurt as much.

It was nice to get out of bed.

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Groggy and grumpy

On Wednesday, 30th of August I went to Starship Children’s Hospital for an operation.

First I had to get changed into a hospital gown.  Then I got wheeled into the operating room.  I had bubblegum flavoured gas to put me to sleep.

When I woke up I was tired and grumpy.  I got an ice block but only had the first lick.  I gave Dad the rest and had a sleep.  I slept for quite a while, waking up in-between.

In the afternoon I watched Netflix on the iPad until I went to sleep at 7:00pm.  I got woken up at 8:00pm, 12:00am and 4:00am so that they could check my blood pressure.

There are screws going into my leg and a big brace around it.  It hurts.  I have a button that I can press if I am sore.  It send medicine into the lure in my hand and down to my leg.

When I am ready, I will have a try on crutches.  Once I can move around, I will be going home.

On Wednesday next week we will start turning the screws.

Surgery update from Mum

As Izzy is somewhat incapacitated, a quick update from me…

Surgery went well and they achieved what they’d hoped. 3 hours of surgery and an hour and a half in recovery, we are now back in the ward and Izzy is drifting in and out of sleep. Will hopefully be feeling much better tomorrow.

Thanks for all the well wishes. 

Pip

Getting Ready

On Tuesday 29th August, we packed my things.

We needed to pack:

  • Nighties
  • Socks & undies
  • Slippers
  • Dresses
  • Sweatshirt
  • Hairbrush & ties
  • Toothbrush & toothpaste
  • Moisturiser
  • Lip balm
  • iPad & charger
  • Phone
  • Night light
  • Books

We also had to go to the hospital for a pre-admission clinic where they checked my weight, blood pressure and heart rate and asked Mum to fill out a sheet of questions including my allergies and date of birth, so that nothing will go wrong.

I had to have an x-ray.  The photo is of me waiting for my x-ray to be checked.  I also had a blood test.  It really really hurt.  They took three tubes of blood.  I got a Mickey Mouse plaster and a sticker that says Shining Star.

After we were done at Starship, I went to get a new prescription for my eye drops.

Tonight I am going to dinner with some of my family and I am not allowed to eat or drink after midnight so I can’t eat breakfast tomorrow.  I will have to have a big dinner!

Operation 101

On Wednesday 30th of August, I am having a leg lengthening.

They are going to break my bone and put on a brace with screws that I am going to turn 1mm per day, for 40 days.  Then my leg will heal for 80 days before they take the brace off.  It should be off for my birthday on the 20th of January.

I will spend the first few days in hospital and then I can go home.  I will have to use crutches and I might need a wheelchair at the start.  I will be able to swim with the brace on and this is how I will keep my leg strong.

The picture is of me getting the brace fitted earlier this year by my doctor, Mr Walsh.

I am feeling very nervous, but I know that I will be okay.