Hi all, an update from me as there are some things that Izzy has said she doesn’t want to write about (but people are asking and interested.)
She is doing extremely well with her mobility and the antibiotics have cleared up the pin site infection although pin cleaning is still pretty traumatic for and results in yelps and tears. It’s lucky I have years of experience inflicting pain (thanks gymnastics coaching) so can for the most part, block it out while I get the job done.
It’s hard to believe we’re already a quarter of the way through the lengthening part of the journey. We’ve wound the struts 8mm so far, which equates to about 10mm in length gains as the struts are on an angle rather than parallel with the bone. Thankfully this part of things doesn’t seem to be causing her any issues (yet.)
The main concern is that her tight hamstring and Achilles tendon will affect progress so she is at physio weekly and has a list of exercises that she needs to do a few times a day. There are a lot of objections to this as it’s hard and sore, but my inner task master is coming to the fore and she’s doing well. The extreme determination has its downsides as when she believes she can’t do something, it’s like banging your head against a brick wall to convince her that she can. Bribery is our go-to trick at the moment.
The big news that I’m sure she will want to write about tonight is that she is back at school today (hooray!) Under strict instructions to have a rest if she needs it, or call to come home if she’s super tired or sore, but I suspect the excitement of being back will get her through today at least!
Thanks for all your comments. She loves reading them and knowing there are so many people rooting for her. 🙂
Today I went to Starship because I had a pin infection. It’s when my pin site gets red and swells up and the hole gets bigger instead of smaller. It feels really sore when I move.
Mr Walsh came to look at my leg to check on everything. He also showed another doctor visiting from the United States. Mr Walsh was glad that it wasn’t a bad infection but said that I need to take antibiotics to kill the germs nibbling at my skin, just in case.
The nurse cleaned my pins again for the second time today while I played Subway Surf on the iPad.
Afterwards, I went to Mum’s work so that she could finish some things. I read The Mysterious Benedict Society and did a unit from a homework book that Mum bought me. It was about the Olympics.
The Mysterious Benedict Society is about four children who are selected through a special test and have to go to an institute to try to stop Mr Curtain, the baddie, from brain-sweeping people’s memories. I like it because it’s a nerve wracking adventure story.
The worst part of taking antibiotics is that it is my first time having to swallow pills. I really don’t like it.
A week after my operation I went back to the hospital for a check up. They started my lengthening and I went to see the physio.
Lengthening involves turning screws on my frame to a certain point each day. Mr Walsh, did the first day, then Mum did the second day. On the third day I have a rest. Each day we wind, we wind 1mm on the screw, this lengthens the frame by about 1.5mm because the screws are on a diagonal; the hypotenuse stuff that Mum tried to explain. Mr Walsh gave Mum a sheet with a progamme on it. There are six screws to wind.
At the physio we did some leg exercises. There are two exercises. One of them I have to squeeze my knee down, the other I have to point and flex my foot to touch Mum’s hand with my toes. I do each one of these ten time for three lots. They feel super duper sore on my pins and I do not like doing them. I have to do them to keep my leg strong and stretch my muscles that are tight.
Getting in and out of the car is very hard. It sometimes hurts me. There are lots of steps:
- Mum gets me out of the house on my crutches.
- Mum gets the seat ready by putting a cushion on it.
- Mum lifts me into the car on a diagonal with my leg on the seat beside me.
- Mum puts the wheelchair into the boot.
It can take 20 minutes to leave the house, but Mum is managing okay. I’m looking forward to my friend Amelia’s birthday party on Sunday and I’m excited that I can go.
This is a picture of the frame. You can see the screws going diagonally between the rings and the pins going into my leg. The foam is to stop the frame from hurting my other leg. we have taken it off because it was not comfortable.
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.
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.
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.
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.