This time?

Two weeks ago I went to see Mr Walsh and he said, “you’re getting the frame off!” The bone has fully joined up.

We have been waiting for a letter to tell us the date, but instead, the hospital phoned Mum yesterday morning saying there was a slot today.

Now we are sitting in the waiting room at Starship pre-op where they will check my weight, temperature and blood pressure. They will ask me lots of questions.

I hope it goes quickly and I can go home with no frame!

A false start

Before getting ready for surgery Mr Walsh wanted one more xray.

It showed the bone was not quite joined up yet so we can’t take the frame off yet.

I am disappointed.

Mum says the worst thing would be to take it off too early and have my leg break or bend.

They have loosened the nuts so that there is a bit more jiggle so the bone grows faster.

We are going to have a special breakfast to cheer me up.

The big day

Today I am getting my frame off.

I am nervous.

At the moment I am sitting in the waiting room. I am second on the list so I shouldn’t have to wait too long.

I am in Day Stay. That means that I should be going home tonight.

I am excited to get the frame off.

UPDATE: We just saw Mr Walsh and he wants one more xray to be sure the bone is strong enough to take the frame off. I will be disappointed if it can’t come off today.

Hard work at physio

Since I last updated my blog we have been doing lots of hard work at physio to get my knee moving and reduce the swelling.  My physio is called Briar.  She is always excited to see me and is really nice.

I have gone to physio once or twice every week and I am supposed to do exercises every day, three times a day.  I cannot always do them all every day because we were very busy before Christmas and in the first month after lengthening everything was really stretched and the exercises were really hard.

Mum has been creating charts to record when I do my exercises to help motivate me.  When I get to a certain number each week, I get a reward.  At the moment I am working towards a mini TY beanie toy for doing 80% of my exercises.

I also have some exercises to do in the pool.  For every three times I do my pool exercises I get an LOL Surprise doll.  Going in the pool is hard because it is cold and makes my muscles shiver when I get out.  This hurts my pin sites.

The exercises I have to do work my ankle, knee and hip – all of the joints in my leg.  I have to do 30 repetitions of each.  The exercises are:

  • Squishing my knee as straight as I can and holding it for 3 seconds.
  • Bending my knee as far as I can against a small push.
  • Using a theraband to make my ankle pull or push in all four directions.
  • Doing ballet kicks backwards and sideways to work my hip.

I am also supposed to be walking as much as possible.  Two weeks ago Mum confiscated one of my crutches because I wasn’t putting any weight through my left leg.  I was very upset but it has been okay.

Lengthening achieved!

Yesterday we finished lengthening!

I am glad that lengthening is over because it is hard to turn some of the struts, and sometimes it hurts.

The last week has been very very hard.  I have been tired and sore because my nerves and muscles and skin have stretched as far as they can.  I have been able to feel the stretch with each millimeter for the last few days.  We had to slow down and take some extra rest days, but we made it.

We lengthened for 41 days, so now I have to heal for 82 days.  During this time the bone will grow together and harden.  It has felt like a really long time.  82 days sounds like a long time too so I am hoping it is faster than it sounds.

Mr Walsh said he would like me to start walking with no crutches as soon as I can.  I am managing to walk around the house with only one crutch.  I will see him again in four weeks and Mum’s goal is to get me walking without any crutches into his office.

Everyone says it is going to get much easier from today as my leg is not stretching anymore.

Guest Post – Mr Matthew (age 5)

It’s been a bit tiring for me while Izzy’s brace has been on because I feel like there’s a lot for me to do.  I have had to give Izzy a lot of stuff because she’s always asking for it because she can’t do it herself.

When Izzy was in hospital is was sort of calm but it was quite lonely.  I missed her.  I was worried about her.

I feel quite sad when I hear her moaning and groaning.  When she does the sore things I usually move to another room.  I love her so much that every time after pin cleaning and lengthening I come in and give her a hug.

QnA Catch Up

It’s been about a month since our last post so going to play catch up with Mum’s QnA for Izzy.  If you’ve got questions, fire away!

1. What was going back to school like?

Some of it was very hard because there are a lot of steps, but I am managing to get to all of my classes.  It’s really hard to get to Art and Music because they have the most steps.  I go very slowly and I have helper who stays behind me when I go up, and in front of me when I go down.  My helper also carries my cushion.  I need a cushion because it hurts to sit on hard objects like plastic chairs because the frame goes all around my leg.

In the last week of term, we had Creative Arts Night where each class does a production over a range of curriculum areas; arts, music, speech, sport and English.  My classes’ production was Golidlocks and the Three Bears from Revolting Rhymes.  I played the High Judge and got to send Bad Goldilocks to jail!  Because of Health & Safety reasons, I was not allowed on stage, so I stood at the corner below the stage during the act.

Being back at school and having three late nights for the performance made me quite tired.

2. What have you been doing in the school holidays?

In the school holidays I have been to the planetarium, the Emoji Movie, the Captain Underpants movie, a theater show of Horrible Histories, Woah Studios, and to visit my grandparents.

3. How have you been feeling?

It is the last weeks of lengthening so I have been feeling very tired and very sore.  Sometimes I just really want to lie in bed and go to sleep but because I am sore I cannot go to sleep.  To help me relax, we have been playing calming music on Spotify during the night.  I have also been having lots of paracetamol and ibruprofen.

4. How has physio been going?

Physio has been very sore.  My nerves are all hurting because they are getting stretched and stretched.  My skin feels funny because it is also stretched and it tingles when we lengthen.  This makes doing my exercise painful.  Mr Walsh has said that if my leg feels too sore we are not to lengthen that day because I have to be able to do my exercises to keep my leg strong.  We had to skip one day of lengthening but I have been doing my exercises every day so that we can keep going for the last week.  We have two more days of lengthening to go.

5. How are the pins?

They are much better.  The antibiotics killed the germs.  Taking the antibiotics was very hard.  I had to chew them with an M&M most of the time, but when we were almost finished I learnt how to swallow them.  The best news is that I have been able to shower for the past two weeks so we don’t have any more pin cleaning.  I have also been able to swim in the pool.  It was a bit funny the first time and getting in and out was tricky, but it felt good to finally be in the water.

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Update from Mum

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.  🙂

(Izzy’s Mum)

Pin Problems

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.

Out and about

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:

  1. Mum gets me out of the house on my crutches.
  2. Mum gets the seat ready by putting a cushion on it.
  3. Mum lifts me into the car on a diagonal with my leg on the seat beside me.
  4. 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.