A couple of weeks ago I saw my gastroenterologist for a check up. She was happy to see me doing better. We have halved my lactulose and have agreed that for now I am stable. We are deferring my tube change till next year to reduce anesetic problems.

My hearing has completely gone in the right ear and I haven’t heard properly in over a week. I see the audiologist on Thursday and am hoping it is the hearing aid otherwise I may need a cochlear implant. My ear anatomy is wonky so we want to avoid as long as possible.

My anxiety and ocd is slowly getting better but I still have bad days.

My pain is doing better the new medicine is very hqrd to put down my tube so I don’t know if I am even getting any at all.

I am hoping to stay stable for a long time but time will tell.

NDIS round 4

Time flys when your having fun they say. Last week I had my 4th NDIS meeting. Those who say it gets better each year are right.

This year was different in that it wasn’t in person. My support coordinator organised a Microsoft team meeting wich didn’t work well. I couldn’t hear them and they couldn’t see me or mum so we had a Telle conference. We all used out phones. I found this worked much better.

We had a lovely planner that was able to go through everything and explained everything well. We found out my employment section is now in my core supports rather than its own section.

I also mentioned I wanted a holiday within NSW so we added that in as well as keeping the behaviour management plan and Auslan course.

I am happy we got a ramp approved for the front door and a hand rail for the walkway. The bathroom is also being approved.

I also got money to fix my wheelchair as the seating isn’t right.

I was very happy and surprised to see everything was approved the same day. And am looking forward to another great year. We can’t predict COVID 19 and the future but I know my service providers mum and my support coordinator will work hard to ensure everything goes smoothly for me. We also can’t predict my gut and health but for now I am stable and am doing all I can to stay that way.

General update

I hope I don’t jinx myself by saying I am doing better and have been out of hospital for almost one month.

I wouldn’t say I am all better. I still have pain but have started a new medication which must be helping.

They also increased my anxiety med which is helping a bit. I think I would say I am stable for now.

As well as the meds to keep calm I try to think positive thoughts like if I want to go to respite and have fun with friends I need to stop worrying about whatever I am thinking about. I find this helps also I try to remember to relax my self.

Drinking peppermint tea also helps to keep me calm. I also vent my feeding tube so the air can come out. I would say I am doing better and hope to keep it that way.

Staying positive in hard times

We all know this year is a very unusual year. There is a pandemic that is putting people on edge. Holidays are canceled and we are restricted in where we can go.

One thing I have found is that the more I worry the more likely my tummy will play up. so I am trying to relax more.

We all need to remember we can’t control everything but we can control how we react to certain situations. For me this is hard as I have anxiety and OCD but I do try hard.

One thing I find that helps is the calm app on the phone. It has different meditations that help to relax and calm the mind. Another thing is turning off from what ever might be upsetting and focus on something else.

It is always good to try to be positive but we also have to realise that it isn’t always possible because no one is perfect and we are all human.

My friends and family are good at helping me to be a better person but it is a long slow process and I think I will always work on it.

NDIS during COVID times

I am getting ready to end my 3rd NDIS plan and work on my 4th plan. This year will be different for me and many others because of COVID and the precautions needed to be taken to stay safe.

Every year they say we have to use all the money allocated or you will get less next round. This year though this didn’t happen so hopefully they will understand.

My plan expires at the end of October and I still haven’t got a meeting time. I know I didn’t use all my money so I am using it up by having more respite and outings. There are some things though I couldn’t do which i still want to do next year

Another thing that is hard with COVID is I may not be able to attend the next CHARGE syndrome confrence in the US because international borders may be still closed and the conference may be canceled to make sure no one gets sick. So I want a holiday but am unsure where I can go.

For my next plan i also want to continue with everything I am doing now and do the things I couldn’t do this year.

One of those things was an AUSLAN course so I can communicate better with signing people and the other was a behavioural management plan to help people who support me know how to best help when I get anxiety and OCD.

I hope it will all go well and I won’t have to wait to long for my new plan


My gut and bowels stopped working again earlier this month. They have now involved the neurology team. A lot of people with charge have Neuro issues including me.

Neurological type problems don’t just involve the brain but the nerves all over so for me they are starting to believe that this plays a part in my problems.

They tried nausea meds which gave me terrible seizure like activity that required tests. The tests came back normal but when I was little I did have them.

Some people need meds to help control neurological problems but I am lucky i just need my meds for reflux and anxiety.

For me there are no obvious neurological answers to my tummy but they think there is some kind of nerve involvement that no one can see and this could be why things slow down and stop working. Many people with Charge are the same as me.

Sometimes they can remove parts but they cant remove everything so they find other ways around it.

Some things that have worked for me are cranial therapies like oestepathy kinesiology and also massage to loosen everything up. i find if I miss a few treatments everything doesn’t work as well.

A day to remember

Every year on the 21st of September the CHARGE syndrome foundation hosts a day to remember. This is international day of kindness. On this day we remember those gone to soon and it is an opportunity to something nice for someone.

2020 is an extra special year because in the time of the COVID pandemic many have worked very hard to keep everyone safe. So I want to acknowledge some of these people who have helped me this year.

First there is my wonderful family and friends who love me unconditionally and put up with me in my worst times.

Next there are my amazing carers and support workers at home and at Life skills and respite. These lovely people support me to be a better person and have helped me have a life during a lockdown. Northcott gave me the opportunity to see my friends online and do something nice. My personal carers take me out and help me at home.

I also am very thankful to my Drs and nurses and all the staff at hospital wheather its a radiologist or the wonderful people at the entrance,cleaners porters and the rest they are truely amazing.

In this time it is good to tell people you appreciate them. You never know how much better they will feel. I love all the people in my life and don’t tell them enough how i feel.

Things I want to do when the virus is gone

This pandemic has a lot of people feeling sad and missing their normal routines. I try to be positive so here is a list of things I would like to do when the pandemic is over and things I would like others to do.

First I want to go and take a big swim at the beach or a pool. After this I would like to go on a holiday with all my friends and family. I also want to celebrate life while remembering those no longer with us.

I want everyone to stay safe and practice good hygiene I want people to remain kind and loving to others.

I want to remember this time and be able to say I made it just like I got through all my other problems. I also need to remember the world isn’t just me.

I want to be able to see some of my friends I haven’t seen all year and go places without worrying about people not doing the right thing. I want to not react to every cough I hear and just relax.

Until that time we all need to do the best we can and try not to worry to much about everything especially things out of our control.


A lot of people with CHARGE syndrome have difficult airways and breathing problems.

I am lucky my breathing is ok but when it comes to surgeries and intubation it is tricky as I have a narrow airway and it is in a different spot than usual.

A lot of people need to be done in the general operating theatres with access to paediatric equipment This can be tricky for me because when they do my gj tube it needs to be done in radiology.

Many charge people have problems with the muscles inside the stomach and bowels. Sometimes with me in particular the peristalsis pushes things back up which is part of what causes reflux. This also caused the jejunal part of my tube to come up into my stomachache. That made me have terrible pain and I ended up in hospital on IV fluids while they worked out how to help me. Last Monday they tried to do it awake but it was to painful and was all looped up.

Last Tuesday I went under. It took 3 hours and my gastro registra was called because the tube was so difficult they thought I would need something else. They also tried to get a new drip or line wich took forever as my veins are very bad.

The tube nurse said they might do the next change under endoscopy with the surgeon and if that doesn’t work I will need a whole new stoma.

We are hoping this lasts longer than a month and that it wont play up on a Thursday or Friday as it takes longer to get things done in the end of the week than it does at the beginning of the week.

Staying safe in uncertain times

Australia is in the middle of a second wave of COVID with most of the cases in Victoria. In my state and area we are getting daily cases and watching closely.

Last week I got a mild cold and had to get tested. There was a huge queue to get into the testing clinic but it was a quick test. A long swab goes up the nostrils and into throat and it can take a day or more for results. I came back negative and couldn’t leave the house till it came back. I would rather stay home than risk getting others really sick.

The thing that gets me is that some people still don’t follow the rules. I get that there are some that are unable to wear a mask but people that can should. You can get nice cloth ones which are nice and snug over the face. Good hygiene helps to.

For me I am in the semi vulnerable category. So while I am mostly healthy Drs believe the virus would mess with my gut and reflux. I am positive I will be ok but want everyone to stay safe.