Holly Mason .org

Latest News
26/04/2010 - Update by Holly: right leg

i am always getting much better i can lift my right leg onto the bed that is a very big thing for me. noone should worry about me i am in a wonderful place to get better

18/04/2010 - 2010 Updates posted

News updates for January, February and March have been added. The website is due for a bit of an overhaul, which is taking longer than expected due to the pressure of study and assignments. Major improvements will include a simpler layout and a better layout for news and photos (the over 100 news items won't all be listed on one really long page any more).

So far this year, our father was with Holly in Germany for the entire month of January, and our sister (Catherine) was in Germany for 6 weeks from February to early April. Our grandmother has been very ill so our mother returned to Australia for 3 weeks to spend time with her while Catherine was in Germany.

09/04/2010 - Cocktail bar

Holly was very tired today because she went out to the local cocktail bar last night for recreation therapy. There was very loud music, and Holly had alcohol-free cocktails and pizza. Our mother reports that she had the biggest smile on her face and enjoyed it a lot.

30/03/2010 - Spring, new therapist

Holly has a new speech therapist now.

It is spring in Germany and the weather has started to warm up. Catherine was able to wear a t-shirt outside, Holly still needs a coat for now. The weather can change a bit in the day, but its quite nice as the sun is out a bit. Much, much better than winter. The trees are just starting to get their leaves and there are jonquils, crocus and snowdrops everywhere.

14/03/2010 - Conversation

Here is a transcript of a conversation between Holly and I today. I have left Holly's sentences as she typed them, you can see that she is quite good with the keyboard. The conversation took place over about 40 minutes.

Me: Hi. I'm just making dinner, but I'll be around.

Holly: hello. what are zou makigfoor diner and how are you

Me: I'm going ok, I got bored from doing an assignment.

Me: For dinner I made a simple sandwich, but I think I'll cook some pasta ready for tomorrow because I won't be home from uni until after 8.

Holly:at\least zou di d theasignmet

Me: It isn't finished yet, but I got a good bit done. I still have 12 days to finish it.

Holly: badit made you bored

Me: It's ok, I'm learning something very useful - it's just more useful when I'm making complicated programs, but the program for the assignment is simple

Me: They have to make it simple so that people can figure it out

Holly: i get to go ioueside

Me: cool

Holly: ie is very ccool for mwe

Holly:helllo

Me: Hello

Me: What's happening at the moment

Holly: i mwaitingtto go on the exersizze bike

Me: Do you go on that much?

Holly: yes

Me: That's good, I hope you're building up lots of strength

Holly: godbye

Me: good bye, have fun

21/02/2010 - Sister in Germany

Update by Anne (our mother):

Catherine (Holly's sister) has arrived safelyin Germany, tired but OK. The sun even came out today to welcome her.

01/02/2010 - Holly's Goals, virus

Update by Anne (our mother):

Here is the list of goals Holly wrote for a meeting with therapists and doctors. There is a much longer version, where she mentioned being able to feed the chooks, but she decided that if she could walk, talk and dress herself then she could do that as well

* Get myself food and put it in my mouth

* Chop food, put food on plates nicely

* Walk and talk and dress myself

* Put DVD's on and watch them

* Get myself out of bed

* Get into bed and make myself comfortable

* I really want my PEG removed because it causes me a lot of pain

* Drive a car, I really want to be able to drive automatic cars, I dont need anything else

* I want to ride a horse in the Olympics, at home I love riding my horses, I also love feeding them. I really like competing my horses

* I want to make sure it will be OK when i have children

* Travel the world

* Get married

* Swim

There has been a bad virus here, the incubation time is 2 days. It looks like we have been able to avoid it, which is a good thing.

26/01/2010 - Memory game, communication, sitting

Update by Anne (our mother):

We played memory game on Saturday morning, and with no other distractions Holly was able to manage a game with 32 cards (she won, of course). Contact with people from Australia through the internet cheers her up, her replies to the messages take a while to spell out, but are a great form of therapy. On Sunday Holly was invited to Sylvia and Peters house, for a home cooked Bavarian meal. The food was very good, Holly even got to eat a piece of cake for dessert.

Today after working on the "red roll" with Felix, Holly was able to sit by herself for a short time, she wobbled quite a bit, but when she was distracted, was able to sit quite still.

23/01/2010 - Goals meeting

There is a meeting on Tuesday with the doctors and therapists to discuss Hollys goals. We already have a nice long list from holly to work with.

18/01/2010 - Therapy, communication

Update by Anne (our mother):

In therapy yesterday, Felix walked Holly with a walker thing, and was able to lean her at an angle that made it possible for her to move her right leg forward. She was able to do this for about half of the steps she took. It was the best she has ever done, and she now enjoys walking very much. As she did it I could easily see her walking in the future. Her back is possibly holding her back a bit, as the left side is contracted, so we are lying her down on her right side with a folded quilt under her waist to encourage the left to stretch.

Holly has been emailing and messaging more people, some messages are a little funny (like the one she sent to felix where she included "you are good looking so i am always happy to see you").

12/01/2010 - Osteopath

The osteopath here has had a look at Hollys back as a possible cause for her to not be able to sit up straight.

10/01/10 - update from Anne

Holly has had a bit of a holiday, with many therapists having a break over the festive season. She has not been as active because of this.

Her right leg and arm have been hurting a lot more than usual, this could be because they are becoming activated, there is certainly more power in her arm and leg. It is unfortunate that this should be so painful. I have been able to change how holly is helped back into the bed: I now stand her to put her in, and she copes with this quite well, even with the pain in her right leg.

Holly is trying very hard to drink as much as possible, as once her drinking is going well the doctors will be able to remove her PEG (stomach tube). It is a slow process, but i am hoping that, as with the eating, when the time is right it will suddenly become possible over a number of days. It will be such a relief to have the peg removed, as it is a constant source of pain to Holly.

It has been very cold, and Holly enjoys going outside in the snow. Once we are out there she can only tolerate the temperature for a short time, then asks to come back in. Her face gets very cold, and stays red for ages after being out. She does not want to touch the snow unless she has gloves on (I dont blame her). We are hoping to build a snow bunny in the rabbit enclosure, but the snow is too cold - we will have to wait until it gets a little mushy for it to stick well. One of Holly's therapies next week will be going out into the snow.

People who haven't seen holly for a few weeks say that they notice a big improvement. I think it is in the look in her eyes. She certainly seems more involved in what is going on around her.

22/12/09 - Common room

This morning Holly chose to eat breakfast in the common room. After breakfast and some sitting up. Holly walked along the hall to the common room with her right leg splint on and Felix supporting her. Once there, she put 3 decorations on the christmas tree there. She may put more on tomorrow.

We're now getting ready to go out shopping. Holly loves going out shopping with people and helping them choose things, so it's good to take the opportunity when we have it. It takes up to half an hour to get all ready to go outside in the cold so it can be hard to fit in with the therapy schedule. It has warmed up a little and may even have been above zero for a while today - there's still snow all over the place but a lot of it has melted and the snow that is there has gone slushy.

20/12/09 - Zoo

We went to the zoo yesterday to see the animals and to buy an owl Holly chose last time. It was very cold so we spent most of the time in the warm enclosures of the tigers, lions, hyenas, elephants, giraffes and meercats. The rest of the time was spent quickly moving between the warm enclosures, and stopping for a few seconds at interesting animals. Holly didn't like the fact that the cold meant she couldn't see some of the animals, and the shop was closed so we couldn't get the owl.

18/12/09 - Youth group

Holly just got back from youth group and she brought with her a baked apple that she made. Pictures will be up on the site shortly.

17/12/09 - Music and right side

Holly has music therapy right now and Margarete is working on getting Holly to use her voice. At the moment she makes sounds with her voice if she is sufficiently frustrated, but the doctors feel that the writing board is so much easier for her to use than her voice at the moment that it is preventing her being motivated to learn to speak.

The situation is similar with Holly's limbs as well - her left side is much easier for her to use than her right side, so she is much more likely to do something with her left hand than to put in the huge effort to do it with her right. Despite this I am seeing an increased amount of use of her right side, and I am hopeful that this will continue to increase as this side becomes more responsive and is easier for her to move.

13/12/09 - Zoo, Walking, Crystals, Iron, Socialization, Snow

We went to the zoo last weekend, and Holly chose another toy owl to be a friend to Hedwig, which she got at the zoo previously. The shop closed before we left the zoo though so we'll be going back again some time soon to see the animals again and get the new owl. Holly adds "I love the zoo so I think its great that we are going there again."

Holly has done walking every day this week. Early in the week Holly walked in the easy walker around the building: she went all the way along the walkway, through station 5, down the lift, through the foyer, up the lift and back through station 2 to her room. This is a very long way compared to how far she has walked and her therapist Felix was very pleased. She was sliding her right leg along for a lot of the time but it got tired after a while, and similarly she was holding her body up very well but it did get tired towards the end and slumped a bit.

Some crystals were given to me for Holly through Girraween Flowers from a man named Edward. Holly has described them as "great" and has gone on to say "I have never met him before that I know of. What he did for me was very nice."

Holly was to have an iron infusion today, but she told the doctor that it hurts a lot and she doesn't want it. The infusion involves placement of an intravenous catheter which stays in for about 20 minutes while the iron supplement is infused. Holly said to me "She (the doctor) should take that injection with her then I wouldn't have it and she wouldn't have to give it to me, she said that was the bit she liked the least so that way would be good for both of us.", and when the doctor was explaining to her that her blood iron is low (this is not particularly unusual for Holly even before the accident) and that it's important to raise it, she said to the doctor "But I do get given Floradix which doesn't have to be injected and raises my blood's iron level." The doctor listened to Holly and I have heard that she has arranged an alternative supplement that is not intravenous.

As Holly's consciousness levels increase it becomes more and more of a problem that she is away from her family and friends in Australia, because she more desperately wants the people that she knows well and loves to be around her. She often feels isolated and is frequently lonely because her friends and home are far away. The Internet helps a little bit but it's not a substitute for real social interaction with friends. Holly has said "Here there is none of my friends and the people I really love like Adam Cooke and my family."

It is a real compromise to Holly's socialization having to be so far from home but there's no appropriate therapy available there. The nurses are encouraging Holly to to socialize more with the other patients and spend time in the common room but this is difficult because the other patients are generally German speakers so there's no possibility for conversation beyond "Hello". Most of the other patients are also much older than Holly so not her first choice of social groups in the best of circumstances. I just asked Holly what she thinks of the common room and her reply was: "Boring. I don't like it when the nurses push me there because I am usually hungry and I have to watch a lot of people eat and I don't get any food from there."

The nurses are very friendly and take time to talk and listen whenever they can, so they are the best socialization outside of family that she can get here.

It has snowed here the past few days. It isn't really cold yet and the snow on the road and pavement is melting away, but it will likely start building up from now on.

Holly wants me to add a message: "To all my friends in Australia: I love you guys and flying back over will be great. I look forward to that a lot, I can't wait for it."

4/12/09 - Treadmill

This morning Holly walked on the treadmill with a harness. She had assistance keeping her back up straight and with moving her feet, and walked 100 meters in 300 steps. I noticed that Holly was holding up and moving her right arm better than I've seen her do.

Holly just had ergotherapy and ate some of her lunch while standing up, with splints to help support her legs.

3/12/09 - This morning's therapy

This morning in therapy Holly was able to sit up straddling a big cylinder. The cylinder is about knee height and is a couple of meters long and is sort of soft like the stuff they use on bus seats.

At the moment Holly has Feldenkrais therapy and is miming cooking chicken soup. Her desire to get back to being a chef and riding horses provides a lot of the incentive she needs to put the effort into her therapy - it requires a lot of input from Holly and without her dedication there would be far less hope of progress.

In Feldenkrais therapy Lena seems to be concentrating on getting Holly's right arm and hand back to normal function. Our mother Anne has observed that Holly's right hand seems to be going through a similar process that her left went through as she gained control and strength in it.

The doctors were in this morning and we gave them the paperwork we have to get filled out for Holly's Australian pension - this has been a ridiculously difficult process so far, and we were initially told that Holly couldn't even get anything, but I think we found out the process after talking to local politicians. When they saw the paperwork the German doctors said they'd thought that the bureaucracy in the German system was bad, but maybe Australia is worse.

01/12/09 - Feldenkrais therapy

Holly just had Feldenkrais therapy and was able to touch each of her fingers on her right hand with her right thumb. The progress is gradual but Holly is improving her control and strength in her right side.

01/12/09 - Update from Germany

Holly is now eating all her food with her mouth, and having only water through her PEG (a tube that runs to her stomach). Last week Holly was having breakfast through her PEG and having lunch and dinner with her mouth, which could take a couple of hours per meal, but she has become a lot faster now and can sometimes finish a meal in under 30 minutes. She is also adamant that there should be pudding after every meal, and sometimes would prefer pudding instead of the meal.

Holly had some communications software and a keyboard brought yesterday. The keyboard has a German layout which makes things a bit unfamiliar but I have managed to get it working with the laptop. Unfortunately the keyboard can't be used for the major functions of the communications software and the touch screen has gone back to the supplier so we might as well just have a text-to-speech program at this stage. I am working on getting a more appropriate voice for the speech functions of the software as well as the provided voices have American accents, which Holly doesn't like, and the 'Karen' voice is readily available and has a far more appropriate accent.

Holly used the 'easy walker' today in therapy, walked down the hall to the lift, then went down to the exit but it was cold and raining outside. The easy walker has a seat like a bicycle seat in the middle of a frame with handles Holly can hold on to or lean on. It has four wheels so she can walk around and work on developing her leg strength and coordination. The time she can spend using this machine is limited at the moment by the amount of pressure from the seat, but the effect of this will decrease as Holly builds up her strength and can take more weight on her legs.

Holly also walks without a machine, with a therapist behind her supporting her and with someone helping her right leg to move. At the moment she has splints for her right ankle and leg that are bandaged on for support while she's walking, but her left leg is without additional support and does all its movement on its own. In the past couple of weeks she has been walking further than before, and will often push on even though there is a lot of pain associated with using her right ankle after a long time with limited use.

23/11/09 - I'm in Germany

I have arrived in Germany. It's great to finally be here and not be stuck behind a screen in my interactions with Holly. An enormous thank you to everyone who has contributed with donations and fundraising that has made it possible for Holly to be here as well as to have her family here.

Holly has developed a lot of abilities that are allowing her to be progressively more independent, although at this stage she still needs assistance with many things. She is getting better and better at communicating using the letter board, and we're expecting better communication options to be available to her soon.

Probably the most impressive improvement is her ability to scoot around in one of the wheelchairs available to her. With the left footrest removed she is able to push or pull herself around through the corridors of the therapy center totally unassisted. This particular chair is an "active" chair which takes effort to sit in, so she can only stay in it for a limited time - this time is being increased as she builds up her endurance.

This is my third morning here and I'll be heading to the clinic quite soon. Now that I've remembered the password to post updates they should be a lot more frequent.

26/10/09 - Activity

On Monday we had a video-linked surprise late birthday party for our sister Catherine. There was a package of birthday presents to open that Holly chose and sent over from Germany. We had cake and decorations at both ends, so it was about as close as we could get to having the family together at the moment. There were lots of smiles, and some pics will be uploaded in the next few days.

Holly has been posting messages and photos on Facebook, with help from our parents - it's wonderful that she can now communicate regularly with friends as this is an important part of her life that has been limited a lot by her injury and her location of treatment. She is now able to spell out words on the letterboard with her left hand faster than with her left foot as she continues to improve. She has also been able to participate in some IRC (realtime internet chat) with our brother and with a friend of ours who has also suffered a brain injury - this is possible because she is so fast at spelling out words with the letterboard.

Holly can now use her left arm for more things - she can zip up zips, hold a spoon and brush her teeth (this still needs work, teeth-brushing is quite an intricate task). She can straighten the fingers well on her left hand so has been able to play rock-paper-scissors, and was able recently to open a cupboard and get out a tambourine to play. In the last week or so Holly was doing finger painting and ended up painting our father Paul instead of the paper, which we all found quite hilarious.

Movement is also beginning to return to her right arm - therapists are working on increasing this and she now moves it now and then. She showed me on a video call the other day how she can curl her right fingers.

Holly has been doing lots of work on her walking - on a treadmill she has walked 39 meters one day and 71 meters another day. When she does this she has our mother Anne helping support one leg and a therapist supporting the other. She has the strongest movement in her left leg, but is working to strengthen her right. A few days ago she walked up 6 steps with help from two therapists - she has posted a photo of this on Facebook.

Holly likes to go out and our parents take her out as much as possible. One outing was to a museum with displays of animals thawed out of glaciers, including a 3.5m tall mammoth. There was also a trip to the zoo and a parade with horses.

Holly is very determined to get better, and we are doing all we can to support her in this goal.

9/10/09 - Stairs, Internet, alphabet board, games

Holly's therapists are excited by how much she can do that she previously couldn't.

She has been working on walking up stairs in therapy. Her left leg is very good and has been improving, and she can move her right leg but needs to strengthen it more. Control of her trunk and left arm are excellent, and she can now do half a transfer to the wheelchair by herself.

Some very exciting news this week is that Holly and our parents now have a decent Internet connection in Germany. Holly has posted some pictures and messages on Facebook since getting the connection, such as "Hello. I'm in Germany. U R my friends. I'm getting better thanx," and "hello, in Germany outside is great." The messages are limited at the moment because Holly has to spell them out with the alphabet board while some arrangements are made with her communication software.

We were also able to get Skype working, so we finally have a way to communicate well between Australia and Germany without spending all our money on international calls. I talked to Holly a few days ago, and we had video so I got to see how she uses the alphabet board, play hand-position copying games with her, have a look around the ward she is in (by having the laptop carried around), and I could show her the dogs (even though they aren't supposed to be in my room with the carpet - I made a special exception, and they covered my desk with hairs). She also showed me how she can move her right leg and arm. It was a very good call with lots of smiles and laughter.

I will be uploading a few pictures from our Skype conversation to show the alphabet board.

The alphabet board is about an A2 sheet of paper (that's 4 sheets of A4 paper laid out in a square) tacked to a caulk board, and has the alphabet in four rows of letters about 4cm to 5cm high, as well as the words "Yes" and "No". Someone holds the board at the foot of her bed and she points to letters with her left big toe, tapping gently on the letter she wants - the person holding the board will say the letter they think she means, and will say the words and sentences as she spells them out to check that they have understood correctly. It seems on average to takes under a second per letter.

The hand position game is played by one person holding their hand in a position, and the other person copying it. Some examples would be pointing, making a fist, stretching the fingers out with the palm up, and many many more. There can also be movements to copy, such as wiggling a finger or moving the hand in a circle.

28/9/09 - Progress, my birthday, crosswords, internet

Holly has made great progress in the last couple of weeks. She has been using an alphabet board to converse and is able to spell quite quickly now. She often says that she is bored and wants to move and go out, and also frequently thanks our mother for everything. Her spelling is very good. For my birthday today she wrote me a message that read "Hello David. Hope you r ok. Bye. Happy Birthday. Love from Holly." I will be flying over towards the end of November and staying for Christmas and Holly's birthday.

Our mother has started doing a crossword with Holly, and she has had no problems with the clues so far. She intends to gradually include harder questions. The only mental problem that she appears to have is with her short term memory, but our mother is confident that this will improve with time and practice.

We should have a better Internet connection in Germany within a week or so, which will mean Holly can contact her friends and remote family members with email, facebook and even Skype.

Holly's physical progress is slow, but her strength increases weekly and she is very motivated to move. She says she wants to be walking by the time her boyfriend returns in January. She is now able to use the bathroom more effectively, which is a great step for her dignity. She Is often able to carry her head up straight, but it will still fall a little sideways and forward if she is tired.

21/9/09 - Photos, Paul in Germany, Adam leaving, kittens

Our father Paul arrived in Germany on Wednesday. He is impressed with how much more able Holly is to smile and show her emotions now - she had a big smile when he arrived. He has brought lots of presents, films and other entertainment from Australia for her. Paul brought a quilt made by members of the community, and she loves it - I expect some pictures with it and will write more when they arrive.

Holly's boyfriend Adam left on Thursday, so she will be upset and miss him. Holly has made an enormous effort and made a lot of improvement since Adam arrived. Her dexterity is improving, she can do a lot with her left hand that she couldn't before. The hard work means that she is experiencing a lot of pain in her joints and muscles that she hasn't used in a long time.

Holly had kitten therapy the other day. I have uploaded some pictures of this and of Holly on a walk around the block, where there are sheep, horses and other interesting things. The weather in Germany is starting to get cold as Autumn arrives, so you'll notice everyone is starting to dress in warmer clothes. It will eventually get cold enough to limit the amount Holly can go outdoors.

14/9/09 - Adam in Germany, Paul in transit, Happy Birthday Catherine

Holly's boyfriend Adam has been in Germany for a number of weeks now, which has motivated her a lot to improve as well as making her happier in herself. He has to leave soon, which will be very difficult for Holly as she wants him to stay.

Since Adam's arrival Holly has made some great improvements: she has been able to touch someone's face with her left hand, smile three times in one day, roll on her side in the bath, type her first sentence with her software, has improved the control of ther left hand and the strong directed movement of her right hand, has gained the strength to push the bed and TV control buttons, spontaneously waves hello and goodbye with an open hand, and can "hug" with her left arm.

Our father, Paul, has been traveling on his way to Germany, and has probably arrived by the time you are reading that, although I haven't heard from him since the last leg of the journey.

Wednesday was our sister's birthday - Happy Birthday Catherine!

28/8/09 - Overview of recent updates

Today I have uploaded four news items: News from Anne on July 24th, News Highlights on Holly and Anne in Germany in mid-August, Current News on Holly and Anne in Germany, and My personal reflections on the current situation.

As contact with Anne and Holly is expensive at the moment and progress is steady but slow, I will be posting updates every fortnight on a Sunday night or Monday morning to ensure that the news is kept up-to-date. Look for a counter on the main page and the news page indicating when the next news update is due.

News is also available on http://www.hollymason.net - a site run by our uncle Keith.

28/8/09 - Current News on Holly and Anne in Germany

We have secured a car that Anne can use to get to Therapiezentrum Burgau instead of riding a push-bike there and back each day. This means she can drive Holly around, and staff at Therapiezentrum have worked with her to teach her to help Holly in and out of the car. Anne has said that it's great having the car and that her knees are finally starting to not hurt after all the cycling.

Yesterday Holly was playing a memory card game on the computer using the touch-screen that she uses for her communication software. Holly chooses to do various different things for entertainment, but it is difficult for her not having her friends, family or pets around - boredom must make the whole situation seem more hopeless to her. Holly is now almost able to use her left hand to press the disabled buttons to open the doors at Therapiezentrum - another small triumph. This kind of progress seems small, but makes a big difference to Holly's independence.

The German equivalent of worker's compensation insurance automatically applies to anyone who is looking for work or on their way to an interview, regardless whether they have been accepted for a position or started working. Liability has been accepted by a German insurance company for Holly's accident, and they have agreed to pay for at least a year of rehabilitation at Therapiezentrum Burgau, communications software, a new wheelchair when Holly needs it, and a pension for Holly. This takes a huge amount of pressure off our family as we no longer need to come up with the enormous sums of money required to keep Holly in therapy. This also means that there's a chance for more family members to visit Holly, which will be excellent for her mood as it will make her feel less isolated overseas.

Our father Paul is planning to fly to Germany in early September to spend 2 months with Anne and Holly. This may have to be cut short since finances are an issue, but I am doing all I can to ensure that all goes ahead as planned. I am hoping to be able to spend a month in Germany once my father is back and can look after the animals here.

28/8/09 - Mid-August News Highlights on Holly and Anne in Germany

Holly has been blowing bubbles and learning to blow a whistle in therapy. There are many muscles involved in these movements so they take a lot of work to relearn. Holly's therapists are working to help her gain better control of her jaw so that she can close her mouth gently rather than snapping it shut. They are also working on Holly's facial muscles and lips to encourage vocalisation as she remains unable to communicate vocally.

Holly's communication is improving, and she is showing a lot of ability to think and reason, despite some trouble with short-term memory. Anne has been working with her communications software to translate it to English and get it all set up properly, and as a result Holly is more comfortable with it and is using it more. Nurses have been holding up cards to ask Holly how she wants to be positioned, so she has more control over what happens to her (control is a very valuable thing for her to have). Holly has tried to press the button to call a lift with her left hand while being wheeled past it. When passed long pieces of grass, Holly can poke them through the wire of the rabbit cage to feed them.

Holly is now able to fully comprehend what has happened to her, and is often very upset about her situation. Anne spends a lot of time comforting her. It is very frustrating for her to be trapped in a body that won't do what she wants it to a lot of the time. She wants to stand, walk and ride horses, but she is also afraid of doing these things. She is able to take some steps around the side of the bed if someone helps her move her right leg - she can move the left leg on its own.

The weather has warmed up in Germany, so Holly and Anne can spend time in the beautiful warmth. They were caught in a storm one day and got drenched before they could get inside, which made Holly uncomfortable and upset but she was ok.

28/8/09 - Personal reflections on the current situation

It is long past time for a big update on the current situation with Holly and our family.

Much has happened over the past couple of months. In many ways things have slowed down considerably - it no longer feels like a hectic and chaotic battle against time, bureaucracy and an almost criminally underfunded public health system, or like a desperate struggle to stop the accident tearing my family apart at the seams when Holly is in most desperate need of our unity and support.

The first 6 months after Holly's injury were like a mad dash for the finish line, so desperate to get proper care for Holly that there was no thought of keeping anything in reserve for the future. That rush took an enormous toll on everyone, as individuals but also on our relationships.

Getting Holly safely to Germany brought possibly the greatest sense of relief I have felt in my entire life, and I was able to relax after 6 months of tension. Finally I could admit that I'd run out of steam months before and had been running on sheer momentum. My eating and sleeping patterns regained some semblance of normality, I stopped feeling muzzy-headed and exhausted all the time. I was able to connect back to the reality of the world around me and start to get my finances out of the red, plan my studies and start to look for work. I could begin to see and work through the problems that were steadily burrowing their roots into my relationships with my family and girlfriend in time to prevent them getting a proper foothold and causing permanent damage. Yesterday I even got around to putting up the maps and posters I took down when I moved back to my parents' house over 6 months ago.

Gradually, however, the reality of the situation began to dawn. Yes, we have done what we set out to achieve: Holly is back in Germany getting world-class treatment. Success! Certainly we have succeeded, and with community support have achieved amazing things, but life is not like a sprint - run hard and fast then finished with, free to rest and recuperate before the next race. Life is more like an endless marathon, with checkpoints along the way but always continuing beyond them. We've reached this checkpoint, and made excellent time. Now begins the next leg of this endless marathon.

In some ways the challenge now is more difficult than before. Holly has made some improvement - it is significant and ongoing, but gradual. Now she and our mother are overseas, 16,000km distant from their home, friends and family. Phone calls and an Internet connection for email are expensive. Holly must face the long and tedious road of recovery without regular calls or visits from her closest friends or her siblings - even simple familiar things that we take for granted such as English language radio stations are of limited availability. This is the time when patients in Holly's position are at risk of giving up, and that's when recovery ends.

Everyone has helped out enormously - it has been amazingly heart-warming to see just how much support is out there when it is needed - and to see that there are still some donations and well-wishes coming in, but all the excitement and adrenaline has worn off and there are other people in need for the community to direct their support to. The community have helped us get back on our feet after this enormous blow, and now it's time to resume the long shaky march on our own feet with just a few close friends and supportive members of the community to steady us when we stumble.

24/7/09 - News from Anne

Hi, its Holly's mum, Anne. This is the first time I have been able to personally write an update on Holly's progress. Finally, after many months, I have regular, but limited, access to the internet.

It has been difficult to pass on information about Holly, and mostly the focus of reports has been optimistic.

I prefer not to dwell on what Holly is incapable of, it just hurts too much. Each small improvement in Holly's condition is celebrated and provides strength, optimism and energy to continue this journey.

On Saturday Holly had her first outing in Germany! Anja, a nurse here at the clinic, invited Holly to visit her home and the nearby forest. Holly was bundled into the family car and thoroughly enjoyed the drive. Although the weather was not great and we did not quite make it into the forest, Holly was in the fresh air and able to see a little of the German countryside on a short walk. Deer at a local farm were frightened by the wheelchair; so unfortunately, we mostly saw retreating deer bottoms.

To be able to spend time inside a home, complete with dogs, cats and horses was a very special gift, and has given Holly a much needed emotional boost. We are very grateful to Anja and her husband for giving up their time and effort to support Holly in this way.

Holly's communication skills improve each week, she is not able to speak, so points with her left foot to words to answer questions. Mostly her answers are "yes" and "no." She is now able to communicate for most of the day, even if she is very tired or dealing with pain.

A large touch screen computer was provided for trial this week. Holly is able to use this although it is a real effort for her to make her foot press where she wants it to. With practice her motor control skills will improve and it will become easier for her. Once she masters the programs it will be possible for Holly to write her own words.

The cast on Holly's right foot and ankle was assessed this week and it was decided to leave it on for one more week to consolidate the healing. The colours are red and blue, the same colour as Munich Soccer team. Holly has been able to lift her head quite often this week; her neck strength is improving daily.

The day when Holly is able to hold her own head up as she sits in her wheelchair; will be a real boost to her self confidence.

Anne

3/7/09 - Communicating well

Holly's communication has taken off in the last week. She can communicate a lot about what she wants and needs for her care. Our mother has been putting four choices on a piece of paper - she has to confirm that she understands what the choices are and that she can point to each of them with her foot, and then can point to the option or options that she wants, and has to confirm her choice by pointing to them again. She has said that her favourite therapy is with her ergotherapist, and that her least favourite is physiotherapy because it is difficult to do and makes her tired. She has also said that she is sad because of the lack of control she has, so my mother has been working to give her as much control as possible, and the nursing staff are involving her more in decisions. She has also said that she has a sore elbow when she rolls over, so that is being looked into.

Our mother feels that Holly's vision is improving because she can read quite small words (she can read very well). She also feels that her improved communication is coming as she feels very safe and secure where she is. Her communication is better in the afternoons than in the mornings, so they are looking into whether this could be an effect of her medication.

Holly was able to lift her right leg up without assistance from her left. She was lying on her left side and lifted the leg about 2 or 3 inches - she was smiling after she did it.

This morning Holly's right ankle was put in a cast to protect it from injury. She had to lie on her back for the casting, which exacerbated a bit of a cough that has been coming and going for the last few days - she has been given an inhaler with some nice-smelling stuff in hot water to help.

Our mother Anne has seen squirrels and fireflies on her rides between the therapy center and the place she's staying.

1/7/09 - Updated news from Germany

Holly is very aware of what is going on around her - she smiles (it is still very subtle) when people she likes come into the room, can wave to people, and can choose which side she wants to lie on. She reacts to conversations going on around her, often when she doesn't seem to be paying attention. In the afternoon she watches TV and is able to hold her head up while watching it (this still requires effort).

Holly is getting fresh fruit juice every day, including apple, blueberry, raspberry and strawberry. She is given pieces of food such as gummy bears or apple wrapped in gauze so she can practice chewing and enjoy the taste without any risk.

Holly's doctors are focussing on communications therapy because she is doing very well with it - music therapy has been cut back a bit to avoid overloading her with too much at once. Holly also has animal therapy with rabbits now. One of her therapists is looking into arranging for Holly to do painting (using her feet).

Yesterday Holly was shown pictures of African animals and was able to choose the correct name and food for each of them. Holly was upset when the communication therapist wanted to talk about cakes and baking. Our mother feels that given the right motivation Holly will be excellent at communicating. At the moment they are working to help her establish a better signal for "No".

Staff at the therapy center have been adjusting Holly's wheelchair to be as low as possible so that she will be able to put her feet on the ground and can work on learning to stand up out of the chair.

6/6/09 - More news from Germany

"Holly is treated so well and with so much love and care and respect for her body - it's just so much different." - Anne Mason.

Tonight Holly fell asleep at 9:20, and our mother said she knows she'll sleep well and be comfortable all night, and that it is so good to go home and go to bed knowing she won't be woken up. Last night while riding her bicycle home our mother saw her first hedgehog, which was very exciting.

When she arrived in Germany, Holly's medications were slowly adjusted to the new time zone over a few days so that there were no interruptions in them, and some of them are now being reduced. She has the same nurses as last time she was in Germany. Lots of the therapists are very happy to have Holly back - some literally jumping up and down with joy. At the moment she is having Physiotherapy, Communications therapy, Ergotherapy, Music therapy and Animal therapy. Holly can now go to all her therapies rather than having them in her room.

Holly got a computer today. It has a touch screen, and at the moment there are four pictures with labels: a girl labeled "Holly", a rabbit, a bed and a toilet. She has tried using it in the wheelchair, but has found it a lot easier to use in bed since she doesn't have to lift her leg up so far to press the button. The computer program is very versatile and so will be modified to best suit her needs as she progresses.

Yesterday Holly did a bunch of rolling on the ground. During the therapy session she went from her wheelchair to a massage table, then from there stood up, then lay down on the floor, rolled around on the floor, then back to the massage table and into her wheelchair. Our mother commented on how natural all the transitions are, with the movements she would make if she were moving herself around without assistance. She has been walking with just one therapist and our mother for support, and has been very keen to take steps. The leg casts are almost full-length and are bandaged onto the back of her legs - they stop her stepping forward but she can sidestep around furniture or along a wall.

The German therapists have not worked much with Holly's swallowing, and they have said that it is going to be very hard for Holly to eat and to speak after her time in Australia - at the moment she will not open her mouth for any of the therapists so they are working on getting her body straight and getting her comfortable with them again - they recognize that it is important for her to trust them before they administer therapies that may make her anxious. The therapists have been doing a lot of stretching of Holly's left side and her head is sitting in a more natural position. One of her therapists got her to peel a banana and hold it up to her mouth.

While walking around with the wheelchair, Holly and our mother came across a hutch with rabbits in it. Holly was allowed to hold one of them and could stroke it with her right hand. By the next day animal therapy was added to Holly's therapies.

3/6/09 - Lots of news

I have spoken to our mother for the first time since she left for Germany with Holly. She has lots of news, all of it good.

It is peaceful at Therapiezentrum. Holly is treated with a lot of respect, love and care every time she is handled. Therapies are not forced, she has a choice - for example, with her music therapist she didn't want to play a stringed instrument, but did want to play with a drum so they did that instead.

The windows of Holly's room are open all the time, she has hardly coughed at all in Germany. Her bed is not noisy, and is firm so she can push off it - it is very very comfortable. She can roll from her side to her tummy, then most of the way back to her side. She has a "Yes" and "No" button at the foot of her bed that she can use any time (these have been replaced with small buttons in preparation for using a computer). Her Neuropsychologist has established that she can spell and read. Holly's left-hand little finger is getting more movement (as well as her thumb and pointer finger). She can scratch itches on her nose etc. using her left hand.

Her diet is soy based with fish oil and she has at least 2 liters of water per day, all her pimples are clearing up, her eyes are bright and her skin is clear. She has been able to practice biting, this is done using a piece of apple wrapped in gauze.

Holly has plaster splints for the back of her legs and a plaster support for her right ankle to stop it rolling. She has been able to walk with support from two people.

1/6/09 - Rolling

The latest news from Germany is that Holly can now roll onto her front and 3/4 of the way back on her own, which is great for her independence.

More information on spelling - this is done by the communications therapist holding up letters, which she taps with her foot. This is such a simple thing it's amazing that it wasn't tried in Australia (as far as I can tell there wasn't anyone assigned to help patients communicate, although the physiotherapists did make an effort to do so). Next week there will be software available so that Holly can use a computer.

Our mother now rides a bike between the therapy center and the flat where she is staying. Her legs are sore but she enjoys the ride, and is getting 7 hours of sleep per night (in Australia she had to reposition Holly every 2 hours, and would have her sleep interrupted between times by some of the staff - many were considerate though and were careful not to wake her).

1/6/09 - Many updates and directed pointing

Please note that I am uploading the last 7 news entries today, so you should read back over them. I had to hold off on uploading the news since there was so much uncertainty associated with getting Holly to Germany - my apologies to any who have been kept in suspense, I know there are many who are eager to hear that Holly is doing well and I regret that it has taken this long to tell you that things are going very well now.

I have a text from our mother this morning saying that Holly can point to the names of Catherine, Gareth and I (her siblings). Holly is now on a soy-based diet with fish oil, and her spots are clearing up - these developed while in Australia and were considered by medical staff here to be just a normal skin condition that did not need any attention.

30/5/09 - Great progress in Germany

Holly no longer has a cough (we have suspected for a long time that it was mainly to do with the dust coming out of the air conditioning). She is communicating "yes" and "no" very well - not with speech yet but using hand signals - she could do this when in Australia but it was not very consistent when she could not get enough sleep. She can read, and has spelled her name and "apple". Holly has taken several steps with the assistance of a walking machine - I'm not entirely sure how this machine works at this stage but I think it provides support but requires her to make the walking movements herself.

29/5/09 - On the news

Holly was on Channel 7 News at 6 O'clock tonight. The story will be available on this site within a week.

27/5/09 - Arrival in Germany

Holly has arrived safely in Germany, the flight went without a hitch and Holly's doctor has reported that everything ran smoothly.

26/5/09 - Flight

Holly's plane has just departed from Brisbane International Airport and is on its way to Germany. Transit time should be around 23 hours, so we can expect Holly to be at Therapiezentrum by around this time tomorrow. Everything has gone as well as we could have hoped with the trip to the airport and getting on the plane. Traffic was surprisingly good despite it being nearly peak hour, very few people seem to be flying at the moment (probably because of swine flu) and the airline staff were very helpful. A Channel 7 News crew were there to record the event, the story should be airing some time this week on the 6 O'clock news.

It's upsetting that I will not be able to see Holly every day or help with her rehab, but it is wonderful to know that she is on her way to a world-class rehabilitation facility and will be in good hands and an environment that will let her reach her full potential for recovery.

23/5/09 - Packing

I took over caring for Holly this afternoon and evening so our mother could go home and pack ready for the trip to Germany. It is important that we be ready to transport Holly as soon as we can since the most reliable advice we have is that it is safe for her to fly. As soon as we can convince the hospital to release her (this seems to me to be made difficult by the bureaucratic nature of the system, and I think the staff are doing all they can to help us within the limitations of that system) or find an alternative option we want to be ready to move.

21/5/09 - CT

Holly has had a followup CT scan which shows that the fluid has reduced (see news for 18/5/09). The doctors had said that she will be ok to fly as long as this is reducing, but now say that they want to wait another 1 or 2 months for it to reabsorb and are refusing to release her for flight. This is amazingly frustrating since she has met their stated conditions for being able to fly and another month will take her to the end of the critical 6 month period during which rehabilitation is most effective. Our advice from Holly's doctors in Germany based on all available information is that there is no significant risk for Holly to fly (other than the normal risks associated with anyone disabled flying).

18/5/09 - Lots of news

The results of Friday's CT scan came in and they show that Holly has some fluid under the prosthesis, her doctors at the PA are concerned about her traveling with this. A doctor with experience transporting patients with brain injuries by air has said that this should not be of concern since it will not expand to the extent that gas would during the pressure changes in aircraft.

Roses for Holly has hit $5000, thank you to everyone who has contributed so far.

Holly is finally relaxed enough to sleep soundly - she slept for 12 hours last night, which is the fourth night in a row that she has had a decent sleep - this makes an enormous positive difference to her level of awareness and ability to communicate.

When we have shown Holly books recently she scans the words with her eyes, and also does the same with the messages on the cards from Roses for Holly - without more complex communication we can't say that Holly is reading, but it is possible that she is.

Holly has devised her own exercise regime for the bath which involves bringing her legs out to touch the side of the bath, then bending one knee and running her foot down the inside of the opposite leg until it is back down next to the other foot - she does this with the left foot on her own, but doesn't yet have enough movement in her right leg so our mother helps her to repeat it on the other side. There is some movement in her right leg - she can wriggle her toes and can move the leg out at the hip using her trunk muscles.

Holly's left hand is still held up near her collar bone a lot, but can now very easily relax down to her sternum or hip when she wants it to.

While having her teeth brushed today Holly was opening her mouth without being asked - usually she needs to be asked or reminded. Our mother said that having a good night sleep makes all the difference.

17/5/09 - Home visit

Holly came home today and got to spend over half an hour out with the horses and family in the paddock. She is always very relaxed at home and had a good sleep in the afternoon after the excitement of the horses.

15/5/09 - CT scan

Holly had a CT scan today which went well. We should have the results back by Monday at the latest, and we're hopeful that the scan will show that everything is healing well so that Holly will be able to fly soon.

This week Holly had one session (about 20 minutes) of feeding with her speech pathologist in which she ate 6 spoons of food.

Holly had 3 gym sessions this week, and has been exercising in the bath in the morning and sleeping more soundly.

12/5/09 - a very big day

Many exciting things happened today, and Holly was very lucid and responsive.

A new wheelchair arrived - the previous new wheelchair was too narrow which made it difficult to do any repositioning or other procedures, so it has been swapped for a wider version of the same model chair. Holly fell asleep soon after peing put in the new wheelchair, a sign that she was very comfortable.

In physiotherapy Holly got to look in a mirror at herself sitting on the physio table - the aim of this is to allow her to see the position of her body so that she can make corrections. After several minutes she became quite emotional so the mirror was removed and she took a while to calm down.

Also in gym Holly stood up - this was done with four people lifting and holding her up. This was possible because of all the exercises she has been doing to build her core strength. Usually she does these in the bath in the morning without any prompting. Yesterday morning she started doing a leg exercise that she hadn't been taught but that she had seen someone else doing in the physio gym the previous day.

The remaining staples were removed from holly's surgical site after gym, which was distressing for her initially, but she stopped crying by half way through after being reassured about how much more comfortable she would be with the staples out.

11/5/09 - some staples out

Today Holly had half of the staples removed from her surgical site, so around 20 are left. These will be removed tomorrow.

7/5/09 - Cushions

We are trying out several different seat cushions for Holly's new wheelchair. These are very important since she spends hours in the chair so needs the right kind of support that will prevent pressure sores without compromising her stability. It will take some days to try out the available cushions and make a decision.

6/5/09 - New wheelchair

Today Holly's new wheelchair arrived - this is needed because we can't take the hospital-supplied chair when Holly flies to Germany. All today's physio time was spent adjusting the new chair to best fit Holly's needs - it has a lot of customizability which is what we need because as Holly's condition changes over the days and weeks so do her positioning and support requirements.

4/5/09 - Four days since the operation

Holly's doctors inspected the surgery site this morning and are pleased with how it is looking. There are 39 staples and Holly looks a bit like she has a mohawk from one side because of how the hair was shaved around the surgery site.

The staff in the ward have been especially supportive over the last several days.

3/5/09 - Head bandage taken off

I looked after Holly today so that our mother could have a break. Holly?s head bandage was taken off this afternoon after I left and I heard that it's looking good. The dressing was changed on her tracheotomy surgery site and it is looking clean and healthy.

2/5/09 - Her own room again

Since coming out of recovery Holly has been moving her right arm and leg more than before the operation. The bandage on Holly's head is due to come off tomorrow afternoon.

Holly as been moved to an individual room - that makes it three room changes in as many days, but it's wonderful to be in a nice peaceful environment without all the activity of caring for other patients in the room.

Because of the long weekend there is no physio scheduled until Wednesday. I think Holly's usual physiotherapist is away and there isn't anyone available to fill in.

30/4/09 - Operation

Today holly had the operation to repair her missing piece of skull with a synthetic prosthesis. She went in for surgery at 12:15pm and came out of recovery around 5pm. Everything went fairly well. Her tracheotomy scar was closed while she was under anaesthetic as well, which is great since we've been asking for this for the last 8 weeks.

There are bandages on her head and neck where the cranioplasty and trachy closure wounds are.

Since coming out of recovery about 2 hours ago Holly has been moving her right arm a lot more than previously, but we don't know if this effect will last. Her right pupil is a bit mroe dilated than before the operation. She has coughed a little bit but has had no significant concerns with breathing or blood oxygenation.

28/4/09

Holly did very well in the gym today holding her head up, it has been the strongest yet and she could support her head for the count of 5. The whole gym session she was very awake and aware.

In the morning Holly had a really nice bath.

26/4/09 - Another home visit

Holly has just left after a visit home. She had a few friends and relatives visit, and watched the first Harry Potter movie. I just heard that the bed Holly is on in hospital is called a Nimbus 2000 (Harry Potter fans will understand the significance of this). I held Holly in a sitting position for a decent portion of the movie, which is great for her progress - she has been quite lucid this week.

24/4/09 -17:00 - a day out with the parents

Holly got to go out today after all thanks to Steve (a wardsman) and her father attaching her feeding machine to the wheelchair. Holly went with her parents to look at medical equipment that we'll need to have Holly at home before going to Germany.

We have also recently been informed that Holly's operation was put off due to an emergency surgery, and that there was some miscommunication between the surgeons and the wards - we were told in the morning that Holly would definitely not have the operation, but the original message before it reached the ward was that there was an emergency surgery going on and they weren't sure how long it would take. More importantly, the message that Holly should be kept off her food doesn't seem to have reached the nursing staff at all, which has led to the surgery not being performed today.

24/4/09 - 12:00 noon - Operation not so cancelled

We have just been informed that Holly can now have the operation after all, but since she has had food she is not a suitable candidate for anaesthetic so she won't be able to have the operation today anyway.

24/4/09 - Operation cancelled

9:46 am - I've just been informed that Holly's operation has been cancelled. The reason we've been given is that there are no senior enough surgeons on to perform the operation. This seems very strange to me since they've been planning it for a week - I would expect the surgeons not to have allowed the operation to be booked if they wouldn't be around. A similar thing happened with Holly's tracheotomy operation (See news for 9/3/09), where all the preparation was done and then we were told that the surgeons weren't available - that was nearly 7 weeks ago and still nothing has been done.

Holly has been fasted overnight in preparation, but now she has gone through the stress of that for no reason, and now has to have her feeding tube attached all day, so she won't be able to get out and about so will be stuck in the ward all day. Anne has had to pack everything up ready to move to the High Dependency Unit, but will now not be moving.

I am personally disgusted at the state of organization in the public medical system, where this kind of thing can happen repeatedly leading to a huge deal of extra distress to a girl who is already in a terrible situation and is showing such determination to get through it. I do not believe that this is an acceptable state of affairs. What are my taxes paying for?

23/4/09 - Operation tomorrow

Holly's skull prosthesis has arrived from Melbourne. It seems like we're just being told whatever is convenient since we just heard it wasn't made yet, but still it's good news that it has arrived. The operation to put it in is scheduled for tomorrow, when we were initially told that it would be - this seems almost miraculous to me, which says something about our experience with the hospital so far.

22/4/09 - In the paper again

There is a story about Holly on the front page of North-West News today.

Holly was kept awake most of last night by the moans of other patients in the room. I find the noise quite unsettling even during the day with all the other background noise, so it must be awful for Holly at night.

We have now been told that Holly's operation to repair her skull will take place on Tuesday, 6 days from now, as the prosthesis will not be made in time for Friday (this is the prosthesis we were told was ready a few weeks ago).

Holly is improving further with building up core strength that she'll need if she is to learn to walk again. Getting dressed after her morning bath I held the left leg of her pants up and she was able to very accurately direct her left leg into it. She has been practicing more lifting her hips up, and helps a lot when this is required for her care.

21/4/09 - no room at BIRU

Holly has been refused rehab at BIRU, the PA hospital's brain injury rehabilitation unit (see news on 1/4/09 for a report of our tour of BIRU).

Today Holly was using her foot to play with bells and feathers on a construction made by our sister Catherine which attaches to the foot of her bed.

Holly didn't sleep a lot last night because the ward was quite noisy.

20/4/09 - new skull delayed

Holly's prosthesis for her skull (the artificial replacement that will replace the missing bone) has not yet been made and may not be ready by Friday, when it is scheduled to be inserted. We were told a while ago that it was already made, but apparently someone put it on hold (I don't know who). The surgeons will be ready to perform the operation on Friday if the prosthesis is made by then.

19/4/09 - Benefit Breakfast

This morning was Holly's Benefit Breakfast. It was great to see so many people there, the organisers did a wonderful job. An enormous thanks to everyone who helped out. The event raised $12,210.10 towards Holly's cause - I've asked the organisers for a report of the event to be added to the website.

Holly came home for the day and stopped in for a while at the breakfast. Much like last time she came home it was immediately obvious how much more comfortable she is here than in the hospital - the contrast really highlights what difference an inappropriate environment can make. Holly got to see the horses and dogs, and watched Harry Potter and the Chamber of Secrets.

17/4/09

Holly had a disturbed night the night before last and couldn't get much sleep because of noise associated with another patient. Holly often lies awake at night because of noise. Her mother generally sleeps for a few hours at a time and wakes up to check on her, and she will often find her awake.

In the bath today Holly's right hand, which has not been very active, was moving more than usual. Holly was able to lift her hips up off the bottom of the bath three times without any help.

Holly has been off some pain medication without showing signs of pain. There is a possibility that her anti-seizure medication could be reduced as well since she has not shown signs of seizure as far as I am aware - note that seizure is different from muscle spasms and Holly is still on medication to prevent muscle spasms.

We have found that Holly's diet is lacking omega 3 fatty acids which are very important for brain repair. We will be supplementing her diet with these - the hospital will not supply them so we have to buy them ourselves.

16/4/09 - Finally updated

I have just uploaded updates for the last 10 days so please check the news section for what's been happening - I apologise for the delay, there is a lot happening at the moment. Especially note that on Sunday Holly came home for the day.

Holly's Benefit breakfast is this coming Sunday and there are still some tickets left, details are in the "fundraising" section. Steve has a whole lot of great looking events lined up and it's looking to be a fantastic morning.

15/4/09 - Visitors

Today Holly had some visitors, and Anne was able to have a rare and much needed break from being at the hospital. Holly's friend from Melbourne was around for a lot of the day, and her aunt was around for the afternoon and evening. I was around from late morning to evening.

Holly can quite consistently answer "yes/no" type questions by moving her left leg for "yes", and not moving it for "no", but this does decrease when she is tired, and can be ambiguous if she has a different reason to move her leg or not move it.

14/4/09 - A good strong cough

Today in physio Holly cleared her chest with 3 coughs. Usually Holly will get a bit of a "tiger" in her throat in the morning and can take a while to get this cleared through a combination of coughing, vocalization and deep breathing. Holly is getting stronger in many ways and her cough is becoming more effective - clearing her chest with just 3 coughs is a sign of this.

12/4/09 - A day at home!

Holly came home today for several hours. She got a day pass and left the hospital around 9. All went very well - Holly got to see the dogs and horses and watch the fishes for a while, and there was an opportunity to have a more relaxed lunch. It was very obvious that Holly was a lot more comfortable here than in the hospital. We put off the return to the hospital an extra hour because Holly was doing well and looked so comfortable, so she left around 3.

9/4/09 - Special visitor, physio

Today Holly was visited by her best friend of several years, who recently moved down to Melbourne to work as a speech pathologist.

During physio and in the wheelchair Holly had good head control - she was able to turn her head slowly while lying down, and could support her head independently for a count of 3, and hold her head in an appropriate position while resting it back on the physio's chest.

Holly is progressing towards learning to roll herself - she is good at moving her left leg and can use this to lift up her left hip or roll her lower half onto her side, and has been working on turning her head in the direction she is turning and with assistance is reaching her arm out to roll her top half.

There is some controlled movement in Holly's right arm, this is still quite minimal.

With some help positioning Holly was able to use her very mobile left leg to drag her right leg into position for sitting up on the side of the physio table, which could be very useful for her increasing independence.

Holly's left arm is getting progressively better at relaxing and moving down to her lap independently. This arm is still held bent right up at the elbow with the hand near her chin a lot of the time - this is an emotional response to feeling insecure rather than a physical contraction.

7/4/09 - Questions, physio

Holly was quite lucid today and answered several questions about what she wants for her ongoing treatment using leg movements.

Holly has been having food trials with small amounts of cordial thickened into jelly. Anne was allowed to feed Holly today - she did better at opening her mouth than previously and swallowed well. She had raspberry jelly. We have about 5 different flavours for her to keep it interesting.

Holly had 90 minutes of physio today. She held her head up for the count of 3 and sat with support for about 30 minutes. While sitting she could move her left foot on and off the block (used to get a flat surface at the right height next to the physio table) at will. She has been turning her head well, still very slowly.

6/4/09 - Back to gym

In the bath, Holly can lift her pelvis up - she has been practicing this during physio and it helps develop muscles she will need for walking.

Holly was coughing a bit all day, which is distressing for her but she handles it a lot better than a week ago, and she continues to show that she can cough and swallow well, which is important to keep her lungs clear. She bit her lip while yawning, causing it to bleed - we're constantly vigilant because we know this can happen, and generally make sure we hold her lip when she yawns to prevent her biting it, unfortunately it only takes a few seconds to miss a yawn. She has been getting better at avoiding biting her lip on her own, but it is difficult because it's such a powerful automatic process.

Today Holly had physio at the gym after a break over the weekend. She can now respond to our requests to turn her head, straighten or bend her left leg, move her thumb, and has some perceivable movement on request of her right foot. Most of this movement takes a while to achieve and a lot of concentration, but she has become very good at moving her left leg and can answer questions by moving her knee from side to side for yes or keeping it still for no (this is while lying down with her knee bent and her foot flat on the gym bed).

Holly was very awake for most of the day, which is encouraging - typically she would sleep on and off all day but recently has been staying awake more.

5/4/09 - Picture

Today we brought Puss (the dog) to visit Holly again. We're looking at bringing Squid (another of the 3 dogs) as well some time soon.

I helped Holly sketch Tiggerbear - one of the toys that accompany Holly as guardians on her adventures in the wheelchair and help out with her physio and other treatments. Tiggerbear was sent to Holly in Germany by our brother Gareth and has been with her since.

Holly has illustrated one book and has created some amazing works, both on paper and canvas, but also in her pastry chef work, which involves a lot of sculpture and other artistic work.

I've added progress bars to the site showing how the fundraising efforts are going. I'm not sure what transport cost to Germany will be, it depends whether an appropriate airline is willing to help out with compassionate fares - I'm hopeful that my estimate is way more than what it will actually cost. We may even be close to having enough for transport and the initial deposit for therapy, especially with the Holly Mason Breakfast Benefit only 2 weeks from today.

My aim now is to find enough parties willing to sponsor Holly for the duration of her therapy in Germany. My uncle Keith in the UK (http://www.masonsoft.co.uk/) is helping increase traffic to the site, so I'm hopeful that businesses and clubs will see the benefit of the recognition they'll get for sponsorship.

4/4/09 - Getting stronger

There is no physiotherapy on weekends (it would appear that people are only sick on weekdays), so Holly had quite a relaxed day, but still managed to get tired out with the morning bath and the usual walk around in the wheelchair. She is building up more strength and now helps us roll her onto her side and lift her pelvis up when we're cleaning or positioning her.

Holly had a new drug added on the 25th of March to control spasms and has not had a spasm since. The dose of another anti-spasm medication has been reduced, which is a positive step as it should allow her better control of her muscles.

3/4/09 - Poking tongue, ENT examination

During Holly's morning bath we were playing tongue-poking-out games - Holly can poke her tongue out but only does it very quickly, which is similar to how she opens her mouth. There may be a connection - she has bitten her tongue a few times and would likely be afraid of doing so again.

After her bath Holly had an examination by an ear, nose and throat (ENT) specialist, including an endoscopy (using a small camera to inspect inside her airways). He said that it was all healing very well and that the worst of the distress that her tracheotomy wound has been causing should be over with. This was scheduled to be closed almost a month ago on March 9th but the operation was postponed because, to my understanding, the surgeons had more critical cases come in that day. It has been causing her significant distress every time she coughs and interferes with her ability to vocalize. I don't personally agree with the "wait and see" approach that has been taken, however I'm not a qualified ENT specialist, just a vet.

2/4/09 - Happy Birthday to Gareth

Happy Birthday Gareth! Gareth is Holly's younger brother, he turns 19 today. I still remember when he was born Holly, Catherine and I were all present (we were 5, 9 and 7 respectively) as he was born at home.

We woke up and there were a bunch of our parents' friends there, it was a bit scary because I didn't know what was going on at first, but then we ventured out of our room and found out. The main things I remember are our mother's friend giving us jelly (I think it was green), bringing my mother cups of ice, and I got to hold him first and cut the cord.

We all shared a wonderful childhood together, and despite having our differences we've generally been a very close family. We've been through some hard times, especially during the last 11 years or so, but Holly's accident is by far the most devastating thing that's ever happened to us. It has threatened to drive us apart, and it's exhausting trying to hold everything together, but all the support people have shown makes it impossible for me to give up. A sincere thank you to all those who have kept me going when I would otherwise have completely broken down.

1/4/09 - Aunt visit, BIRU

Today our aunt (Anne's sister) visited from down South. Holly is generally more alert when someone familiar visits, especially when she hasn't seen them for a while.

We were taken on a tour of the Brain Injuries Rehabilitation Unit (BIRU) at PA. Note that the following details may be a little inaccurate, they're just what I remember at the moment. This 26 bed facility is the main institution in Queensland's public health system for rehabilitation of patients with brain injury, which means that many patients do not have access to rehab since there are about 15 to 20 times this many patients with traumatic brain injury awaiting rehabilitation. At least two of the beds appeared completely unoccupied (without anything on bedside tables) during our visit.

In contrast to Therapiezentrum Burgau, where the importance of involving family in the rehabilitation process has been emphasized by medical staff, the philosophy at BIRU is to limit the time that patients can spend with their family, with visiting hours from noon to 8pm on weekdays, to encourage them to develop independence. I am more inclined to trust the judgement of staff at a facility with 100 beds and around 500 employees which successfully rehabilitates patients from all over the world.

Holly has not been accepted into BIRU at this stage - I am not sure of their entry requirements, but there are numerous patients like Holly who do not meet them. An excerpt from the Therapiezentrum Burgau website (http://www.therapiezentrum-burgau.de/) translated by Google (http://translate.google.com) reads "Every patient, even with the most severe brain damage, has a worthy attempt rehabilitation. This should at the earliest possible time at a specialized clinic to be done." Despite the fairly basic translation the message here is quite clear, and this is a huge contrast to how things work in Queensland's public health system, with patients being accepted into rehabilitation only when they have made much of the progress on their own.

31/3/09 - details not posted

Today I interviewed my mother for an account of the events during the first few days after Holly arrived in Australia leading to her 6-day stay in the intensive care unit. At this stage it is not appropriate to publish these details.

28/3/09 - Three months since the accident

Holly has had quite a relaxed day, despite being given laxatives when she definitely doesn't need them (a hospital policy we've been battling against). It has been quite nice outside so we've had Holly out in the wheelchair for quite a while.

Today it has been 3 months since the accident - an important landmark, half way through the critical period for rehabilitation - and an appropriate time to look back over the progress so far.

Of the last 3 months Holly spent 2 weeks at Ulm Military Hospital, 4 weeks at Therapiezentrum Burgau and 6 weeks at Princess Alexandra Hospital.

In Ulm Military Hospital Holly had emergency surgery and some follow-up operations supportive care while she became stable enough to transfer for early intervention rehabilitation. There was a high probability that Holly would not survive the initial surgery and we have the world-class expertise of the surgeons at Ulm to thank for Holly's survival.

At Therapiezentrum Burgau Holly was given further supportive medical treatment while undergoing intensive early-intervention rehabilitation. On an average day Holly would have an hour with an ergotherapist working on swallowing and tracheotomy management, an hour with a physiotherapist, 45 minutes with a communications therapist and an hour with a music therapist. She had Sundays off, and did physiotherapy with a nurse and her parents, which included about 15-20 minutes on a tilt table.

At Princess Alexandra Hospital Holly was first in High Dependency Unit (HDU) of the Neurological Ward for under a week, contracted pneumonia and had an acute hypoxic episode and spent 6 days in ICU while recovering from those, then around another week in HDU before being moved to a room without 3 other patients. In the new room she immediately started sleeping better and becoming more interactive, and was at around the stage of recovery she had reached in Germany after 2 weeks in this room. In the last week Holly has been moved back to a room with more other patients in it, which has been associated with a significant decrease in her amount of interaction and the rate of her improvement in general. Since leaving ICU Holly is seen by a physiotherapist for 30-60 minutes on weekdays, and by a speech pathologist for 10-20 minutes every few days, but every weekday now that food trials have commenced.

Overall during her 6 weeks in Germany Holly went all the way from the brink of death to learning to communicate by blinking and pressing a button, and able to make some controlled limb movements when asked.

Overall during her 6 weeks in Australia Holly has gone from the stage she had reached in Germany backwards a long way then slowly recovered to a state where she no longer consistently answers questions with a definite yes or yes/no signal but can communicate a lot of basic needs to her mother, and where she is learning to have some consistent control over her limbs.

27/3/09 - On the news again

Holly was on the news again tonight - I didn't get a chance to see but I heard it was for 4 minutes this time. Holly hasn't been the same since moving to the other room - she is a lot less communicative and spending a lot more time "hiding" - essentially just shutting down. It isn't a suitable environment for her, she doesn't sleep as well or focus as well as usual on things she's doing.

Holly was quite relaxed after some massage when I left this evening, so I am hopeful that she will sleep well, but she has been waking up unsettled during the night lately.

25/3/09 - On the news

Holly was visited by our dog "Puss" again today, but did not interact much with him compared with last time - she isn't happy in the new room.

Holly has been having more spasms since Monday - these are very distressing for her and very obviously painful. Her medication was finally reviewed and adjusted in the evening, after our numerous requests to do so. It seems that quite a laid-back approach to pain management is used here - I wonder if this would be the case if Holly was capable of telling medical personnel herself how much pain she is experiencing.

Holly was on the news tonight - the story was cut down a lot by the editors, but there has been a promising response with donations and information through the website. Thanks to everyone for their support.

24/3/09 - Change of room

Holly has moved to a room with three other patients in it. This isn't a suitable environment for her since there are too many distractions and it will make it more difficult for her to focus on what's being asked of her and she's unlikely to sleep soundly if she doesn't feel secure.

Holly needed morphine last night due to a series of spasms that were worse than usual.

23/3/09 - A good day

Holly's spasms are slowly going. Today she had a very good physio session with some rolling - Hayley, the physio (who has been amazingly helpful) is very happy with her progress. Holly's consciousness is increasing.

22/3/09 - Visit from a friend

Holly got a visit from our dog "Puss" today - he can't go in the hospital, of course, but we can walk him outside while Holly is in her wheelchair. She has been practicing with control of her left leg and was able to pat him with it, which she did repeatedly before falling asleep (as she will often do after something so exciting).

20/3/09 - Holly has a tummy bug

Holly threw up this morning, which is quite troubling for everyone. She has had an IV line placed for fluid support. She has been unwell the rest of the day but has not thrown up again. I was away most of the day and haven't got all the details yet.

19/3/09 - Filmed for the news

Holly and some family members and friends were filmed today by a Channel 7 news crew. The story should be airing on Monday night at 6pm. Anne was still not 100% today but was able to be at the hospital again and should be most of the way to recovery by tomorrow as it appears to be just an uncomplicated case of food poisoning.

Holly had a good physio session at the gym and was able to eat a few more spoonfuls of jelly while sitting with support. Holly's right eye is opening a little more.

18/3/09 - Anne sick

Today Holly's mother was ill and had to spend most of the day away resting. I (her brother David) looked after her until the evening when Catherine (her sister) arrived to take over her care. It appears to be a simple case of food poisoning so Holly should have her mother back by her side tomorrow. Holly had a fairly good day, with a (now regular) walk around the hospital in the wheelchair, some physio, then a rest with music, some games in the afternoon and DVDs later on. Holly's right eye is opening more than yesterday, and although she has still to get it pointing the same way as the left she does appear to be using it to look at things sometimes. Holly was also able to eat a few spoons of jelly as the first step towards being able to eat rather than be fed through a tube.

17/3/09 - Walks, maracas and more toe wiggling

Today Holly sat for over 15 minutes in the gym and spent around 3 hours in the wheelchair - we went for a walk around the hospital and sat outside for a little while but had to go back inside for Holly to have some medication. We helped Holly play maracas while listening to the radio today.

Holly was able to move her toes on her left foot multiple times very purposefully when asked to do so.

Holly's right eye has been open for most of the time that her left eye was open, wider than previously but still less than half way.

There was rumour that Holly would be moved to a different room with more people today, but thankfully that hasn't happened yet - Holly needs a relatively quiet environment to be comfortable. Holly could still be moved at any time without warning, so we have to be in a constant state of readiness for this possibility.

Holly's awareness still hasn't advanced to the stage it was at in Germany.

Holly has been accepted to return to Therapiezentrum Burgau if we can afford the ~$1000/day and medical transport.

15/3/09 - Wiggling toes

Today Holly was able to wiggle her toes when asked to by the nurse. She tolerated traveling further in the wheelchair and seems very comfortable in it.

13/3/09 - Venturing outside

Today was a good day for Holly, despite needing morphine in the very early hours. She had a long session at the gym (after 2 days without this), during which she was held in a sitting position for over 15 minutes and was in a near standing position on a tilt table for around 10 minutes. The session finished with fitting Holly into a wheelchair with an appropriate headrest that has been arranged by Holly's physiotherapist. Holly stayed in the wheelchair for a couple of hours, we took her outside as far as the rain would allow. Holly's right eye was opening a bit wider than yesterday (about 6mm).

12/3/09 - Wheelchair

Holly had a fairly calm day today. Her right eye opened for longer than previous days, still not very wide. An appropriate wheelchair has finally been organized and Anne was able to take her for a walk for the first time since Germany, including going a little way outside (it was too cold in Germany to go out). Holly's tracheotomy is looking cleaner and more closed than a couple of days ago, but is not expected to close completely without surgical intervention - there is still no word on when this will be rescheduled. Holly had some muscle spasms in the afternoon but was comfortable after her scheduled pain medication.

11/3/09 - Ear infection

Today was a difficult day for Holly as she was experiencing more muscle spasms than usual. She did not go to the gym for physio like on most days, but instead had some physiotherapy in a chair and in bed. Holly's right eye has been opening a little more today. Holly is being treated for an ear infection in her left ear, which seems to have been causing distress due to pain or discomfort when she yawns and coughs. The infection may also have been causing some unpleasant sensations when being moved, especially as this is done very fast for Holly due to OHS restrictions in the hospital.

10/3/09 - Increasing physio, right eye opening

Today Holly had a lot of physiotherapy including sitting for around 20 minutes and being rotated to an almost standing position on a tilt-table. The session was exhausting. Holly's right eye opened a bit more today (it has begun to open a little over the past few days, but not very wide).

9/3/09 - Trachy surgery delayed

Holly's tracheotomy was scheduled to be surgically closed today, but the (quite minor) operation was delayed, possibly by up to 2 weeks. We hope it will be done soon as it is very distressing for Holly as the wound reopens every time she coughs. The first bunch of roses from Roses for Holly arrived today (the picture in the "Roses for Holly" banner is one I took of the bunch).

8/3/09 - Tracheotomy out

Holly had her tracheotomy tube out a few days ago and has been breathing mainly through her nose since. As long as there are no problems the tracheotomy hole will be surgically closed in the next few days. Her mother is staying with her over the weekend to ensure that there are no problems.

Holly has been making good progress and is having increasing amounts of physiotherapy, she can hold her head upright unassisted for short periods of time, and her right eye has opened a little way on a couple of occasions.

17/2/09 - Holly is in Brisbane

Holly and Anne arrived safely at Brisbane airport this evening and Holly is now in the high dependency section of the neurological ward of Princess Alexandra hospital. Anne will be staying with Holly as long as hospital staff will let her. Holly slept for most of the flight, but was awake for 5 hours of one of the legs with muscle spasms until appropriate drugs could be picked up at the stopover to control these. Paul is on a plane between Sydney and Brisbane and is due back in about an hour.

16/2/09 - Holly's flight home

Holly, Anne and Paul are all booked to fly back to Australia and everything is running smoothly so far. Holly and Anne are due to arrive at Brisbane airport at 7:35pm, and Paul at 11pm. Upon arrival Holly will be transported by ambulance directly to Princess Alexandra hospital for temporary admission to high dependency ward before moving to ward 2C (neuro ward).

Access for visitors will be very limited initially as medical staff will have much work to do assessing Holly's condition after the flight and will probably initially allow only her parents, and then siblings. We must also be careful not to overwhelm Holly as the change of environment and routine will be a lot to cope with already. I thank everyone for their patience with this - keep the letters and such coming for now.

15/2/09 - Button pressing

Holly's condition has been slowly improving, she still spends a lot of time sleeping but when awake can sometimes press a button with her elbow for rudimentary communication. I think at the moment the casts are back on her feet.

12/2/09 - Paraphrased from Paul in Germany

Holly is doing relatively well and is impressing her therapists with her advances. The worst case would be if she made no advances, but this is not the case. The advances are seemingly minor but each step is important in her recovery. It will take many months or years for her to recover as her injuries are severe, to whatever level she is able, but no one can tell us what this will be as every case is different and it is impossible to generalise. We have to hope for Hollys complete recovery and put everything in place to enable this.

It is most likely that Holly will be medivaced to Australia on the 16th Feb. This is due to limitations in the insurance covering her present treatment. We are not at all happy about this, but unless we can come up with a lot of money quickly ( tens of thousands ) we really have no choice.

Anne has been working tirelessly with Holly since she got here and has contributed greatly to Holly doing so well. When we get back, we know that everyone will want to visit, but this will be at the doctors discretion initially. David will keep in touch with everyone regarding this.Thanks to everyone for your support. It would be so much more difficult without it.

1/2/09 - A day off

Holly no longer needs a respiratory monitor or heart monitor, she just has a pulse oximeter (which measures pulse rate and blood oxygen concentration).While on a tilting table (they use it to stand her upright) Holly has been able to balance her head for a few seconds. She had an excess of mucus in her nose that was preventing her breathing through her normal airway (so through the tracheotomy instead) but it appears to be clearing up with drugs. She is scheduled to have her ceramic implant (harder than the original piece of skull that it's replacing) in on March 20th.

Today she has a day off from rehab stuff, which means she gets massages, is read to, has her nails done, etc.

26/1/09 - Therapiezentrum Burgau

Holly is now in a brain injury rehabilitation facility (Therapiezentrum Burgau), and is no longer in such a critical condition. Over the past week or so she has been gradually improving but is still not particularly conscious. Her temperature regulation seems to be functioning quite well now with no assistance required. She is swallowing better and in the last day or two has started opening her mouth - looks like it's to yawn and it looks like she's trying to stretch at the same time. There are now casts on her feet because she's been in bed so long (something to do with keeping the ligaments and such from contracting up I think). She moves little - today she straightened out her leg twice when it was bent and she's recently been able to move her head about 1/2". She can open her left eye a bit and tends to do so when something interesting is going on, and can focus it on things a bit as well.

Her rehab involves a lot of music, moving her around (she was bundled up in a wheelchair for our mother to wheel around at one point), taste stimulation, physio, etc. and the clinic is filming her progress for a movie for their 20th anniversary. They're long days for my mother with a long drive there and back. My father is on his way over right now and should arrive this morning (but Germany time so tomorrow morning to those over there). They've got a big flat to rent now which is 5 minutes away and big enough that plenty of people can fit in it to visit.

25/1/09 - Yawning

Holly can now open her mouth now and yawn. When it happened the first time her lips bled heaps because she had not opened her mouth for weeks. She is still learning to swallow.

12/1/09 - Brief update

Holly is still unconscious but moves her limbs a little. She is moving out of intensive care very soon, so I guess we can say her condition is no longer critical.

5/1/09 - Tracheotomy

Holly had a tracheotomy last night (Brisbane time) to reduce the chance of infection from her breathing tube, she's more comfortable now and they don't have to mess with her mouth as much. She has breathed for an hour unassisted. She moved her right hand about 6" towards our mother's face when she was looking into her slightly open eye.

We're trying to organize Holly's British passport to make it easier to organize things, we just need to find a passport photo - it's difficult because you're not allowed to smile.

3/1/09 - Anne is with Holly in Germany

We heard from Anne in Germany today. She is allowed to spend 10 hours per day with Holly and has been reading to her.

Holly is still on a ventilator but is doing most of her breathing on her own. She has moved her leg but I'm not sure how much. Anne can recognize changes in facial expression while she reads, and Holly started crying when she was going to leave so the doctors let her stay longer. I don't think Holly has been conscious yet but clearly she's aware that her mother is there with her.

31/12/08 - Anne flying to Germany

My mother set off to Germany at around 2 this afternoon, all went fairly smoothly, thanks to everyone for all their help and support.

The doctors have taken Holly off a lot of the drugs she's been on and her inflammation has reduced more.

30/12/08 - Holly in a coma

Holly was kicked in the back of the head by a horse a couple of days ago in Babenhausen in Germany and was airlifted to Ulm. Over the past few days she's been in an induced coma with skull fractures with possible eye involvement. The latest news as of about 7pm Brisbane time (30/12) is that her left pupil is contracting, which is a good sign, and they're planning to wake her up over the next couple of days, which is another good sign.

Our mother is setting off around noon tomorrow (31/12) to see her and should be arriving there around the time she's waking up.