Violet's Journey with Hydrocephalus & Microphthalmia

More Genetic Research

2012-01-21T13:55:00.002+11:00

Over the years Violet has been part of numerous genetic research overseas and here. Last night we received a call from Violet's geneticist to ask if we would like to take part in a new and very exciting research that is being run through The Children's Hospital of Philadelphia (CHOP) into genetic causes of rare medical conditions.

It is called Next Generation Sequencing. The great thing about this research is that they look at EVERY gene (25,000 odd) ! They don't just have to pick one gene and test that.

As you would imagine it is very expensive to have these kinds of tests but we are lucky to have been chosen by Violet's geneticist to take part in more research and have it all funded. I know I cannot get my hopes too high to have an answer to why Violet has been born with the complex conditions she has but I am willing to give it a try.

As they have had Violet's bloods and tissue samples from when she was born they only require Dave and I to give a blood sample to submit to the research. We are booked to do this early Monday morning.

It will be a long wait to hear if they have found any answers but I am also hoping through this that they may be able to help better manage Violet's conditions and advise of anymore possible implications they may have on her in the future. This would also benefit Emily if there is a genetic issue that could be passed through to other family members.

Neurosurgeon Appointment

2012-01-17T17:41:00.000+11:00

After a nice 4 weeks off appointments and therapies, we are back into it for 2012.

Today Violet had her neurosurgical review.

As her headaches are ongoing and still daily and she has had no joy with any meds to help manage them, he would now like to do ICP monitoring to check what the pressure is inside her head. He thinks she may have a partial blockage and this will either confirm this or not.

This means up to 48 hours in hospital and a small brain surgery to have it all attached. Instead of going through her rickham's reservoir or her shunt, he has instead opted to go through on the opposite side of her head to avoid further risks of infection. Although he will need make a burr hole for this which worries me.

He is organising for this to be done in the next 2-4 weeks.

Certainly not the way I thought this year would start.

6 Year Shunt Anniversary

2012-01-16T12:30:00.000+11:00

Today is Violet's 6 year shunt anniversary.

After another devastating year hearing of more children losing their lives to failing shunts, I am again thankful Violet has not had any issues to date with her shunt.

2011

2011-12-22T23:11:00.000+11:00

Well, hard to believe we have made it through this year! It has been one bitch of a year.

This time last year we were gearing up for Violet's first orthopaedic surgery. Now she has been through it and she has done so with huge amounts of complications and delays in her rehab and also the prospect of more surgery in 18 months, which makes me just want to scream!

I know things could be much worse for her and us, but sometimes I feel it would be nice to have a break...you know a complete break from everything. I know this is our 'new normal' but I remember closer to when Violet was born and having to go to so many appointments after being discharged and thinking to myself naively that it would only be for a little while, here we are over 6 years later and still our life is as hectic as it was then.

Last week she finished her first year at school, she received a graduation certificate for completing Kindergarten. It has been a huge year not only with her surgery but also her schooling and the many hiccups that have been ongoing for her at school this year.

I am hoping that with a new year, a new school may also be on the cards for Violet. I am currently on the search...and it's not hard to wonder why when you see the many photos I have taken this year of things gone wrong at that place.

We had our last hospital appointment this week for Violet's sister which was a nice change for Violet not having to be the one. We are looking forward to some appointment and hospital free time at least until the 9th January when it all starts back up for Violet.

Genetics Appointment

2011-11-24T21:02:00.001+11:00

This morning Violet had her annual genetics review. Sadly another visit that revealed no answers as to why Violet is Violet.

The search continues and I am thankful that Violet is currently stable in general and with her hemihypertrophy and her overgrowth syndrome yet to be classified.

The good news from her recent abdominal MRI is that she has no vascular lesions in the abdomen or impacting on her organs as they originally thought!

She was pretty well behaved for her appointment considering there was 7 people in the room examining her as per usual for her geneticist appointments.

Image

Tantrum City

2011-11-15T22:36:00.001+11:00

Well, where do I start this post...the title explains alot of what is going on.

After a few years now of Violet being defiant, oppositional and even at times aggressive, I finally had enough yesterday morning and it was only 8.30am (had only been up for 1 hour by that stage) It all started over Violet expecting me to drive her to Anthony (from The Wiggles) house.

Her behaviour make me feel upset, helpless...defeated.

Violet's meltdowns last for up to 1 hour and you can only imagine how emotionally draining that is when a child is being so naughty and then turn on you with aggression. It is always over something so small or even nothing.

She has been assessed by the Child Development Unit at the hospital and they did say she has massive developmental delays (which I knew of course) but also many flavours of autism but not a diagnosis of autism.

I really am unsure how to deal with this behaviour; I have tried a course, tried my own strategies, talked to psychologists about Violet and still nothing seems to be helping. It's very hard to detach yourself emotionally while dealing with it.

I try to go through my life looking as if I am coping and most days I don't do too bad a job of that. But eventually it all gets to be too much and I crumble.

Really feeling so helpless and I think I will have to use some of Violet's Better Start funding for private psychologist to get further help.

Hoping our 3 day weekend down the coast with the kids and dogs may help me de-stress even if only for a little while...

Orthopaedic Surgeon Appointment

2011-11-10T21:10:00.001+11:00

This morning Violet had another orthopaedic surgeon review.

He wants to do further surgery alot sooner than we had expected. He decided today it would involve a tibial rotation. This is because she also has external tibial torsion (ETT) This would involve cutting her tibia and rotating it to improve the alignment and hold the bone in place until it heals...makes me cringe just hearing it!

He would also like to release her left foot (non hemi-side) as she has quite severe in-toeing on this side and UCBL's have not helped with this issue. She is being casted for another UCBL until surgery in 18 months. The casting will be done in February and will also involve a new AFO.

He is waiting 18 months for the next surgery just to allow time for her to get over her surgery this year...thankfully!

While there we also had an x-ray of her left pinkie which has a growth under the skin on the knuckle joint and has been getting bigger over the past 6 month.

Next orthopaedic surgeon review not for 6 whole months!

Botox Clinic

2011-11-02T17:31:00.002+11:00

Today Violet had Botox Clinic.

This was the first time in a long time for her arm/elbow/hand as we have been concentrating on her leg/foot for so long, so she could receive maximum Botox into those areas.

She fasted so well and finally had her injections around 2.30pm. She did not require any pre-med! She wanted to take off her dressings herself and the main cry was because she had to lay on the bed. She was a champ!!

Think she has had to use that nitrous mask so much during her post op debriding of her pressure sore that she is dare I say it "getting used to it"? Having Botox every 6 months since the age of 2 didn't do it, but the constant months of this years post op care!

Well, regardless I was stoked and so happy that it was less traumatic for her and in turn me!

Botox clinic follow-up 30th November.

Side Effects

2011-10-30T14:40:00.000+11:00

Seems I may have left off a major side effect for the new med, cognitive effects!

Well, not sure what it is about the second night of Violet taking her new meds but last night for the first time ever she wet the bed. The only time Violet has ever had urinary incontinence has been during seizures or post botox but last night I assume the med caused this to happen not a seizure.

So, not sure what to do now. May try another night and see how it goes again. She was very upset about it all and needed alot of reassurance that it was okay.

So hard to find a balance between meds vs side effects. The worse thing is she isn't even on the proper does yet as she is being weaned on.

Neurologist Appointment

2011-10-27T18:11:00.000+11:00

Neurologist appointment today found us checking over Violet's shunt from a hit to her head yesterday from a soccer ball at school that hit her right next to her shunt. All seems okay with the shunt which is relieving to hear.

We again discussed the last med Amitriptyline/Endep for her daily headaches. He does feel it was the cause of her seizure at the time of taking it. So, today he decided to start her on another med Topamax (which I have used myself) so will see how this goes and hope for no major side effects.

All being well, he will review her again in 3 months.

Tooth Fairy

2011-10-25T16:43:00.001+11:00

Yesterday, after a couple of wobbly months...Violet's bottom tooth finally fell out on its own. She would not let a soul touch it and preferred to let it come out on its own.

She was very excited last night to put her tooth out for the tooth fairy. This morning she was very excited receiving some money in exchange for her tooth.

Think I was equally as excited seeing her tooth fall out but also felt a little sad as I realise my baby is growing up.

Thank you Better Start Funding

2011-10-22T20:59:00.000+11:00

On Friday we finally accessed some of Violet's Better Start funding for private physio.

Just as the last private physio back when she was much younger, this physio too also had something I have not seen in all the years from her current physio, it's called "passion". Was like a breath of fresh air to receive services from someone that actually cares and gives you new ideas!

To think the current physio has given us no exercises or ideas to strengthen Violet's leg/foot post op and in general and even said no exercises would be as good as the exercise she can get from walking! Well, I have news for her! We have some and they are great and they will help! Walking is by no means enough! Really makes you wonder where they get there certification from?!

We have started on the new physios exercises and Violet is willing to do them, which is fantastic and makes life so much easier.

She also feel Violet needs to have her UCBL back in her left shoe as she is taking nearly all her weight on the outer of her left foot and also intoeing on that side. So back to orthotics for both feet.

Her next appt with her is in 2 weeks.

I will also be calling an OT, Speech Therapist and a Psychologist to access more Better Start through them. Let me tell you, Violet is in desperate need of all but at the moment very urgent for the psychologist...she has been awful with behaviour. She is again being oppositional and defiant and even does some very strange things.

Need to access as much of the funding as possible before she turns 7 in August.

Opthamologist Appointment

2011-10-19T22:54:00.001+11:00

Asked Emily today if she wanted to get out of school early and come with Violet and I to the hospital, she then asked what clinic we were going to and I said the eye clinic and she said no. A shame I can't get out of the worst wait clinic in the hospital.

Violet was given some eye drops and had her eye examined by the Opthamologist. He said that even with were her cut was last week from her fall that she is one lucky girl not to have any damage to the back of her eye. So relieved to hear that all is okay.

He also said that being as Violet has monocular vision, when she falls it is guaranteed she will land on a object etc with her good eye. This is because she will favour to look with that eye due to it being the one with vision.

He wants us to get onto her glasses asap for her vision issues in her right and also for extra protection. We picked out a frame 2 weeks ago, so now just need to order them.

We also had a funding review this morning at Violet's school which will rollover her current hours for next year but we are also asking for additional funding on top of what she has.

Well after a 2 hour review of current funding, seems asking for additional funding is too much, even an extra half hour is too much to ask. Apparently the DET think she has more than she should already?! The fight continues in 5 weeks at next meeting, just for that additional half hour.

To top it off have another fight on our hands to keep her 2 hours per week vision support funding! After last weeks accident, need we to prove why she needs this to stay?

So, we had to get a new letter for her current vision from the Opthamologist today which remains unchanged to support the vision support she has already to hopefully continue.

Can you believe I also need to get another letter from her specialists at the hospital to show she still has cerebral palsy next year?! Even the DET's Disability Itinerant Support Lady said don't they realise CP is a lifelong condition that does not improve!

Update

2011-10-18T14:29:00.001+11:00

Last Friday while I was at TAFE, I received a phone call from the school to say Violet's eye had stated bleeding everywhere again. So, I left TAFE to collect her and on doing so found her with her face still covered in blood, no basic first aid to even clean the area had been performed. As I know this can be done by the school (using gloves obviously) as this is covered in the course I am currently studying, I was not impressed nothing was done at all!

I took her to the GP straight away and he advised me she now had an eye infection. She started AB's that night and by Monday we could see her whole eye again which was great. Not only better for vision but so I could see the full extent of the damage to her eye.

We are off to see the Opthamologist tomorrow to check her eyes anyway and will obviously have her vision and health checked for this eye. She has had huge amounts of pain in that eye since the fall. Have everything crossed all is okay still.

I did bring the issue up with the Principal about the 'zero' basic first aid that was given and he told me they are very restricted in what they can do...well they did nothing...surely they could have cleaned her face at the very least! He even added a note to this weeks newsletter stating that they can only administer basic first aid..."Hey newsflash, you did NOTHING!"

Today, we were back to the hospital for an Orthotist appointment to fix her AFO as it broke near the hinge, so that is all fixed for now and if it breaks again, they will need to mould her for a new AFO.

In other news:

She has Botox on 2nd November for her arm/elbow/hand.

One of my worst fears

2011-10-12T12:39:00.001+11:00

Yesterday afternoon I arrived earlier to the school and was in the office when Violet's teacher happened to see me there and say hello as she went back to the class. Not long after, she came running back to the office and said come quick Violet has fallen and hit her face. So, I ran to her classroom.

To say Violet was screaming is an understatement! When I saw Violet she was still on the floor and blood was everywhere, all over her arms, the carpet, her face, eye and side of her head. Another teacher that was in the classroom when it happened was holding tissues up to her right eye to stop the bleeding. I was pretty freaked out when I initially saw her in the classroom covered in blood and her good eye, her only "seeing" eye she has, being the one that was injured! Her eye was already so swollen. On seeing the blood on the side of her head, I was so flustered I could not remember what side of her head her shunt was on and then remembered it was the opposite side thankfully.

I carried her out of the classroom to the office to get an icepack to help stop the swelling.
When getting with her to the office, the lady there seemed to busy to notice me standing there with Violet bleeding and I asked her if she could get me a icepack or if I could get one. I tried to calm her down and reassure her all was going to be okay and she was very good letting me use the icepack on her eye.

Sadly, no one even offered to administer any first aid, knowing Violet I probably wouldn't have taken them up on it, but the fact no one offered was very disappointing.

I had to wait for Emily to come back from another school she had been visiting for the day with her class, so I decided to call Dave to come and collect Violet as I know he has done First Aid and thought he may be able to clean it to get a better look at what we were dealing with.

Half an hour after the accident, her nose started bleeding which had us concerned. This was mainly as no one had told us what exactly had happened so we were unsure if she had hit her head aswell and took her to the hospital to have her checked over and have her eye cleaned and dressed.

She was in agony while they were cleaning it, she used more than a few choice words and then cried out "I need someone to kiss me". I was already there comforting, reassuring her but she needed some kisses too.

Doctor checked her over thoroughly and tried to check her eye under the swelling as best she could. Dr said no school until at least Friday and to monitor her for any concussion, vision changes or additional excessive bleeding.

By 9pm she was unable to see out of her eye from all the swelling and this morning she was unable to see when she woke up which was very stressful for her.

I rang the school this morning to tell them she would not be in as she was unable to see and also asked them if they had written up a incident report. He said he hadn't as yet but had a note on his desk to do so. Violet's teacher is away today on a course, so he said until she comes back tomorrow nothing could be written.

He told me what he was told that happened she fell over in the classroom as the teacher asked her to come to her desk for testing sight words or something and there is only a small gap between the teachers desk and another piece of wooden furniture, so needless to say she fell over there and fell landing with her eye on the edge of the wooden furniture.

She has an appointment booked with her Opthamologist next week anyway, so will have them check her eye thoroughly and her vision then, by that time the swelling should have subsided.

As anyone that knows me, this is 'one of the many' worse fears I have for Violet,protecting and maintaining the vision she has in her seeing eye. People over the years have said I am paranoid, but yesterday only further reinforces my fears of what can happen and how quickly that little vision she has can be taken away permanently!

Physio Update

2011-09-30T22:08:00.000+10:00

Physio from the hospital rang today to make appointment for Violet's hydrotherapy which she is starting next Wednesday. She will also be filming her walking with and without her AFO.

She told me she had contacted the CP Alliance's Physio and explained Violet needed physio from them and they are not to close her file for physio. The CP Alliance's physio asked why and also said what goals do you have for Violet. Hospital physio explained that she needs alot of physio not to mention her post op needs and that if she wasn't going to do any physio on Violet the surgery will have been completely for nothing and she would be back to her pre-op state in no time at all!

So I hope to hear from them soon about following this all up but will not hold my breath. I rang a private physio today that I used when Violet was a baby and hope to hear back from her next week about starting some sessions with her.

Orthopaedic Surgeon Appointment

2011-09-29T22:34:00.000+10:00

Orthopaedic surgeon review this morning.

She had some more weight baring x-rays today as this is the first time she has been able to stand for them post op. Surgeon is still not happy with Violet's surgery results.

While there, he decided to hinge her AFO but the Orthotist did it at the wrong degree and we were up and down like yo-yos getting everything adjusted, the surgeon was not impressed that the Orthotist had made it incorrectly and tore strips off her on the phone while we were in his office. It still wasn't right when we left, but we had been there for 3 hours by then and it was not meant to be a long appointment. They made the decision to get Violet back next week for it to be adjusted again, otherwise he wants a new AFO to be made!

Seems she has got a crouch gait on that right leg and the hinged AFO is not helping this! Her calf muscles are so weak and she needs physio to help strengthen this up. It is very frustrating as you put your trust in their expertise as usual and they procrastinate and make incorrect decisions!

The other frustrating factor in all of this is that the physio from the CP Alliance came out to assess her a few weeks ago and she hardly receives services from them at all now since starting Preschool last year and after assessing her came to the conclusion that she does not require ANY physio at all and she is fine!! She hasn't had ANY physio post op yet!! I am so over that place! I told the surgeon this is how the physio felt today and he was horrified and disagreed with her thoughts and has now organised Violet to have some hydrotherapy and physio through the hospital.

On top of this, I am going to be accessing her Better Start funding she was recently approved for and make the most of that before she is 7.

Surgeon reviews her again in 6 weeks.

Short lived

2011-09-25T15:39:00.001+10:00

Well, not long after posting that we were starting Violet on her new med endep for her headaches, on Friday night Violet had a seizure. This was her first one in 18 months after having her seizures controlled by her med Epilim.

It was not a status epilepticus this time as all her past ones have been. This was a short seizure and for the first time she came out of it herself. Which meant no trip to the hospital for once! This would most likely be due to the fact she is on the Epilim and it can change the way seizures appear or act and also the duration of them. So thank you Epilim for that!

As for the endep for her headaches? Well, I rang the Neurology registrar and he felt it wouldn't have been the endep as she is on a low dose while she weans onto it and it was only the second night she had been taking it. He said it takes weeks to take effect from building up in your system. Even so, we have made the decision to stop it. It seemed too much of a coincidence and we are not willing to hinder her well managed seizures for a headache med.

Here we go

2011-09-22T19:42:00.003+10:00

Well, I have made the decison finally to medicate Violet for her daily headaches. She started on Amitriptyline/Endep tonight. They want her to take the dose at night as it does make you tired.

Here's hoping not too many side effects and less headaches!

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Overcorrection?

2011-09-13T15:14:00.007+10:00

Some of the goals of the surgery were to provide Violet with a straighter, flatter foot position, bring her heal down, no more foot drop and help her foot stop rolling out and eventually be out of her AFO one day.

Well, yes one of those things have been achieved her foot is definitely flatter and she has stopped walking on the outer side of it, but seems she has a new issue...she now has her foot rolling inwards!

So, Violet will definitely be keeping her AFO as she is unable to walk without it and there will definitely be more surgeries down the road as surgeon thought initially pre-op, but now this! As she tightens more, seems she will have no choice.

Let me tell you, we are not in a hurry for it, I really want to wait until Violet can make the decision she wants the surgery again, which will probably be when she finds walking even harder.

Here are a couple of photos of her weight baring without her AFO:

She says

2011-09-11T13:02:00.001+10:00

Two of my favourite things Violet has said to me lately:

"I just wanna keep you forever"

"your my cute adult"

Orthopaedic Surgery

2011-09-04T23:04:00.001+10:00

***WARNING TO THOSE WITH WEAK STOMACHS, HAS PHOTOS OF PRESSURE ULCERS***

Make a video - it's fun, easy and free!
www.onetruemedia.com

Neurologist Appointment

2011-08-30T20:47:00.009+10:00

Violet's Neurologist is very keen to start her on Amitriptyline/Endep for her daily headaches.

He required an ECG before she starts the meds, which to me...rings alarm bells. He said it can affect the heart, so they need an ECG before starting so they know: 1. Her heart is okay at the moment and 2. To compare further ECG's to down the track if anything happens.

Another reason I am hesitant in her starting on this med is that I have used it since my brain tumor op for my own and it didn't work. Plus all the many additional side effects that are very unpleasant and some of which I had when I was on it.

Just stuck on what is best to do? Medicate her with so many other side effects that come with it or let her keep putting up with daily headaches?

My 2 Fave Girls

2011-08-28T14:47:00.002+10:00

A nice surprise

2011-08-24T12:34:00.009+10:00

A few months ago now, I put a request into Quilts 4 Kids for Violet.

She was very surprised to receive her quilt on Monday! Couldn't have come at a better time as Violet was and still is sick. Many stitchers from around the world including Australia have participated in the stitching and many have even stiched on their names and where they live to their square.

They did an awesome job and can't thank them all enough for these cool quilts they make for kids with life threatening or life long medical conditions.

Spoke too soon

2011-08-22T12:33:00.003+10:00

Well, seems Violet's pressure sore is still active and since having her padding in her AFO removed last Thursday it has started to flare up again. She has been walking but in huge amounts of pain and not able to walk far again :(

We are back to the Kids Hospital tomorrow to have the padding put back in to accommodate her pressure sore a bit longer. The last thing I want is for her to go backwards again! We are hoping we will not have to cancel the appointment, as she has been ill the past 2 days with high temps and spending her days sleeping.

The good news for this post is: Received blood results for her thyroid and it is back to normal! Huzzah!

Orthopaedic Surgeon Appointment

2011-08-18T16:03:00.014+10:00

This morning we were back into the swing of appointments after nearly 3 weeks off!

First she had her Orthopaedic review and he was so pleased to confirm now that after 6 months, numerous amounts of painkillers and been thru 3 different seasons that her ulcer is basically healed.

Sadly, he is a bit worried if the surgery has helped. He definitely has her foot in a flatter, straighter position when looking at it without her walking. But when she walks she is walking with her foot turned out now and not straight as it should be :( He also feels the tendon lengthening may not have been enough. She also still has a foot drop that appears to not have corrected from the surgery :(

He was going to make her AFO hinged today but decided to wait a bit longer and keep her foot in the rigid AFO for a bit longer to keep the position. Her adapted AFO from a few weeks ago to compensate the pressure ulcer has been put back to normal and they made a 1.5cm rise in her left shoe for her non CP side that is 1.5cm's shorter than the right side.

After the 6 month delay from the pressure ulcer, she finally starts her post op physio on Monday.

We go back in 6 weeks for another review.

Here is a photo from today of her healed ulcer, the lumpiness is scar tissue that the ulcer has caused:

After this appointment she was off to have her bloods checked again for her thyroid issues. She was for the first time EVER able to do it with only a little bit of whinging! So proud of her!

We have another Neurologist review next Thursday, so we will receive these blood test results then and if her TSH is still elevated, we will have another specialist to add to her already long list...an Endocrinologist!

Violet turns 6

2011-08-14T16:47:00.007+10:00

Well, Violet's first 'real' birthday party went so well.

Here are a few photos from the day, including her lovely fairy:

I am a little over baking cakes but still have to bake a few more as she will have another cake on Tuesday for her actual birthday and also some to take into school.

A Break

2011-08-13T15:58:00.006+10:00

You may have noticed the past few weeks there hasn't been many blog posts from us.

Well, the good news is that as Violet's ulcer is improving so much we haven't been back to the hospital for the past 3 weeks. This has been the longest break from appointments this year yet! It has been a great break from it all. Back into the swing of hospital appointments again next week.

Tomorrow we are having a fairy party in a garden of a cafe near us for Violet's 6th Birthday which is on Tuesday. Really looking forward to it! Normally it is just the 4 of us, so this will be Violet's first "real" party with friends from school.

Take a look at this

2011-07-31T21:07:00.002+10:00

Just check out how fantastic Violet's ulcer is healing now!

In fact it's now so good I am going to post the photo directly to her blog!

So here it is:

Headaches

2011-07-22T15:21:00.001+10:00

It has now been well over a year of constant headaches for Violet. Over the past 2 weeks, they have started to become unbearable for her. I have been up with Violet at night time with her screaming for hours, not knowing what to do with herself. I have never seen her like it before.

Took her to Kids Hospital Friday and they admitted her for a CT scan and shunt series study. Neurosurgeon wanted to check for shunt dysfunction.

She was as usual very good for her head CT and stayed completely still for it.

Then came the shunt series study. This was a whole different story! Especially when the Doctor was unable to access her rickham's reservoir to inject the isotopes, as the last time they did a shunt series was back in 2007 and seems her bone has grown over some of the resevoir (so they think) I really think she just had no idea! She had the isotopes sitting there ready and by the time she had poked Violet's head with 3 needles unsuccessfully, she decided to get an ultrasound of her rickhams to check where to insert and by that time more isotopes needed to be prepared as they expire after half an hour.

During the poking of needles in the head, Violet was screaming and in pain. She whipped out some "big" swear words all in the correct context and at first I didn't stop her, as I was so annoyed with all their flapping around and their inability to get it in!

Finally a sonographer arrived to do the ultrasound and he found where to insert the needle and did it himself.

They took some CSF samples to be tested and finally inserted the lovely nuclear isotopes into her brain for the study.

At the end of it all, we were met by her Neurosurgeon who told us the great news that her shunt IS functioning and we could be discharged.

With shunt malfunction ruled out for now, her Neurologist is keen to start her on some daily prophylactic meds...i am not keen on adding more meds to her current regime though, especially if she also ends up also needing hormone meds for her thyroid issues later down the track. I found it so hard when I was forced to make the decision to medicate her for her epilepsy 3 years ago, I know this may sound lame of me, but I cried. Even though I knew it would be in her best interests, it was one of the hardest decisions for me to make.

Ocularist Appointment

2011-07-21T13:11:00.006+10:00

This morning we finally picked up Violet's new scleral shell.

Looks great and Violet wore it to school today! She hasn't worn a shell for such a long time as she has been waiting on her new one and it has been a long time in the making.

Paediatrician Appointment

2011-07-20T12:47:00.002+10:00

After a long time of not actually seeing Violet's Paed, today we finally did!

She weighed in at 30.4kg's today.

Just a check up really and to organise for the additional blood tests to check her TSH (Thyroid Stimulating Hormone) level in 1 months time.

The thyroid gland produces two main hormones: T3 and T4.

Having appropriate levels of thyroid hormone is critical for good health. These hormones control the body’s metabolic rate and help regulate body temperature.

TSH is released from the pituitary gland in the brain and stimulates the thyroid gland to release thyroid hormones T3 and T4.

Violet's TSH level was 7.59 (normal range 0.6-5.0) but her thyroid hormone (T4) is normal meaning her pituitary gland in her brain is making addtional TSH for some unknown reason. Guess we will have to wait and see what her next blood test shows...

Abdominal MRI Results

2011-07-15T15:40:00.009+10:00

We received the abdominal MRI results and there are no masses or lesions seen on her kidneys and all her other organs look good. Such a relief!

It did reveal she has twice the abdominal fat that she should have!

She will still require annual kidney ultrasounds to check for Wilms Tumour as she does have the increased risk of developing this tumour.

From her bloods tests that same day, all her liver function, epilim levels were fine but it revealed her TSH was elevated. This is to do with the thyroid. Hoping it will sort itself out and be a once off rise. She has Paediatrician appointment on Wednesday afternoon and her Neurologist wants the Paed to organise some additional blood tests to check into this further.

Update

2011-07-14T15:24:00.009+10:00

Violet was scheduled to have her Ocularist appointment today but he had to postpone until next Thursday which worked out well for us as she had another appointment at the hospital to review her ulcer and pick up the new dressings they had ordered.

They now have her using Mepitel Silicone Dressings. She is unsure if the wound is ready for this dressing as she still has a fair amount of exudate coming out from it. So will have to see how it goes.

The best news today was they will definitely not need to surgically close it!

Here is the latest photo. (Alison, think you may be able to handle the look of it now it's almost healed completely!)

They have also adapted Violet's AFO to accommodate her pressure sore in turn to be able to do some weight baring and a little walking. As you can see in the photo below not exactly the most comfortable way to wear your AFO but for the first time in almost 5 months of not weight baring she has been and walking a few steps but needing lots of rests inbetween due to pain and also lack of stamina but she is very pleased to be walking when she can tolerate it. Brought tears to my eyes to be able to see her walk again, was like watching her walk for the first time.

Her foot position is not the best as she seems to be trying to compensate for her ulcer even though they have adapted the AFO. Here's hoping her foot position improves in time when her ulcer has healed.

They are also writing a letter for the school so they have authorisation to let her get out of her wheelchair at school in the classroom and toilet only at this stage. Which would mean the end of the hoist much to Violet's and my delight! She will still need assistance in the playground until it heals completely and improves her stamina. She is no doubt even more susceptible than normal to being knocked over.

So later in Term 3 she may just be able to walk into the school for the first time in 5 months!

Abdominal MRI

2011-07-06T15:57:00.014+10:00

Today is my birthday and what better way to spend it than at The Children's Hospital...not!

Sadly this is the date they booked her MRI and I was not willing to question the date in case we had to wait longer for an alternate date.

As mentioned in my last genetics appointment post, this was an abdominal MRI.

Early admission of 7.30am this morning which was pretty good as I knew she was first on the list and would be out quickish.

Today Violet weighed in at a hefty 29.8kg's and 125cm in height.

She went under at 9.15am and 11.15am. MRI itself was for 1 hour and 20 minutes. Went longer than anticipated as they came out and advised us they were taking additional sequences on top of the normal.

While she was under I had them take bloods for her Neurologist as I still haven't got around to getting them done as she always talks me out of having them...she even wakes up at night talking about not having blood tests if she knows we are going to the hospital for anything.

Back to recovery she went and she never fails to disappoint...screaming and crying the whole duration to the point we were given a private room.

CNC came down to also check on her pressure ulcer. She is quite happy with the progress it has made that past few days and we will be starting a new dressing in the next couple of weeks for the next stage of this ongoing saga.

Once home she slept off her GA.

Specialist will hopefully have report by Friday to let us know results and hopefully put our minds at ease for a bit longer.

Next on the list is another MRI of her chest and paraspinal regions to check if there is any impact on her spine yet due to her vascular malformations.

To top off my birthday, I have an awful migraine...yay!

Update

2011-07-01T08:36:00.001+10:00

We were back to the orthopaedic surgeon yesterday to again use some more silver nitrate on Violet's pressure ulcer.

I asked him the likelihood of this silver nitrate actually working to help her ulcer and he said it was 50/50. I told him I was not happy with this percentage. He said if it does fail to work he will surgically close the ulcer which will most likely be the last week of the holidays or the first week of Term 3 as he is away next week.

Here is the latest photo. At the left side and above and a bit to the right of the ulcer which has the gap around the edge is the main section he needs to come off and looks quite deep as that side was the deeper side of the ulcer. It will not granulate on these gaps until this happens. So this is what is currently holding up the healing.

Update

2011-06-26T11:35:00.010+10:00

On Thursday at Violet's rehab review, surgeon decided to cancel the surgical closure of her pressure ulcer that was scheduled for Friday. Surgeon feels surgery may still need to be done but on Thursday they decided to first try some silver nitrate to burn off some of the dead areas on the ulcer that just haven't been lifting naturally. He is hoping it will start to heal now he has burnt this area off. She has been in alot of pain since he did this, so hoping that is a good sign.

There was a big discussion on Thursday between the surgeon and the CNC, he wanted to use the silver nitrate while the CNC felt it was the wrong decision. I am hoping the surgeons decision was the right one!

On looking at it today it is very red again. I was worried when finishing her AB's on Thursday and the surgeon not wanting to continue them that the staph might flare up again...so here's hoping that it's not!

Another Setback

2011-06-18T13:08:00.006+10:00

Violet had her swab result come back from Tuesday and it wasn't great news. She has another Staph infection.

A heavy growth of two strains of Staphylococcus Aureus isolated. She is back on AB's. Just hope this clears before her surgery next Friday, I highly doubt it will though.

Very frustrating when the dressings we have been using state "Nanocrystalline silver protects the wound site from bacterial contamination.

Besties

2011-06-16T14:31:00.004+10:00

Update

2011-06-14T11:44:00.008+10:00

Well after 3 sleepless nights of Violet being in pain with her foot and after using Panadol and Nurofen and then resorting to Morphine last night and it still not helping her pain, I took her in first thing this morning to the hospital.

CNC took a swab from the ulcer and decided to change her dressing to a silver impregnated foam dressing called Mepilex Ag.

Surgeon came in and has now decided after 4 months of not walking and not healing quickly enough that he will surgically close the ulcer and clean it thoroughly as he was thinking a few months ago. He said otherwise it would be several more months before it healed completely.

This is just way too long for any child to endure, let alone a child that is normally mobile.

Surgery should be in the next 2 weeks. We are awaiting a date from theatre.

After surgery, she will be on AB's again and incision should take 2 weeks to heal and then hopefully with everything crossed small amounts of weightbaring may just begin! Again not allowed to go straight into weightbaring constantly or walking straight away as her ulcer will be very soon to reappear if she does too much too soon.

Here is the latest photo of it.

Friends Fundraising

2011-06-13T17:39:00.028+10:00

Some of the lovely families I have met online the past few years who have children with varying medical conditions and disabilities are busy fundraising at the moment for organisations that have had a big impact on their children's lives so far in this journey.

Parents of one of the children I am talking about have even recently set up their own organisation for children with the same condition as her daughter and is raising much needed funds for it.

First, there is a little champ named Cadel:

Cadel lives with hydrocephalus and has had 17 separate brain surgeries, 43 scans, survived two more infections in his brain and spent over six months of his life in hospital. Cadel now lives with two shunts, and each of those shunts drains two separate areas of the brain. Shunts will fail by becoming blocked or infected in 40% of paediatric patients within the first year of being placed. Cadel has this risk times four.

You can donate to Cadel's fundraising here at Team Cadel raising much needed money for the NeuroSurgical Research Foundation, which is a cause very close to my heart.

The objective of the Foundation is directed towards funding research into the cause, diagnosis, prevention and treatment of disease or malfunction of the brain,spine and nerves.

Second, there is the gorgeous Emily:

I met Emily and her Mum last month on their trip to Sydney. Emily has Cerebral Palsy and is supporting The Centre for Cerebral Palsy's Wheelie Big Challenge for the second year! She raised much needed funds last year to help children just like her for the EIP (Early Intervention Program) that The Centre for Cerebral Palsy provide. Help her achieve her goal this year in helping a fantastic organisation continue to provide it's fantastic services. You can donate to Emily's Wheelie Big Challenge here.

Last but not least, the lovely Ellie:

Ellie was born with a rare genetic condition called Wolf Hirschhorn Syndrome. Ellie's parents started an organisation called 4P AUSSIE KIDZ and it aims to raise public awareness about Wolf Hirschhorn Syndrome and money to assist with the financial burden associated with this condition.

Funds raised by 4P AUSSIE KIDZ will be used to provide financial assistance towards things that may be required for a child with WHS. Such as standing frames, walking frames, car sets, communication devices, wheel chairs, and even possibly blocks of private therapy. For example: Speech therapy, Physiotherapy, Occupational therapy.

Another great organisation to donate to, which you can do here 4P Aussie Kidz.

Update

2011-06-06T10:06:00.003+10:00

This morning we had a review of Violet's pressure ulcer.

Seems the silver dressings are now keeping her ulcer too moist and there was again alot of slough on the wound, so they have decided to go back to using the solosite gel dressings again.

Feels like there is no end in sight.

Here is today's photo after being cleaned.

Neurologist Appointment

2011-05-30T17:23:00.009+10:00

This afternoon Violet had her Neurology review.

Neurologist still concerned about her daily headaches. She has also been very tired lately, to the point where I have been having to wake her up and when she is awake is constantly saying she is tired. Yes I know she has started school this year and may be worn out from school. However having a shunt we can never disregard these kind of symptoms as they could be possible issues with her shunt, even a slow decline of it starting to play up. You would think she would have more energy if anything from not walking like she would be normally.

He is having her bloods done including Epilim levels, liver function etc and would also like her to have a review with her Opthamologist to have him check her eye muscles and if these don't turn anything up, he would like to look into checking pressure in her skull through her Rickham's Reservoir.

Next review in 3 months.

Update

2011-05-27T13:03:00.008+10:00

Yesterday Violet had another review to check on her pressure ulcer at the hospital.

Silver dressings are working very very well, which is great news. If only they had listened to me months ago about using them! They said to me that "it's just a matter of finding the right dressing and in turn the one that will work". Well, from all my friends including nurse friends who have used them and knew they worked surely a hospital would know they work for ulcers, as there is enough literature on the internet to support it.

Still have a long way to go though unfortunately. I was told yesterday that once this ulcer does heal, she will not be able to walk on it much as it could easily come back or break the surface where it has healed...not the best news to hear! If only she hadn't got this ulcer at all or at the very least it wasn't located under her foot! The worst possible place when you have just gone through orthopaedic surgery, so can't walk and could in fact hinder her surgery altogether with this huge delay and in the loss of feeling and indentation it will leave!

Hoping it will be healed very soon as it had now been 13 ½ weeks and counting of no walking and no REAL baths, she is still in her bath chair and receiving sponge baths only.

Orthopaedic surgeon was there to see her aswell and I mentioned to him that when I look back at my photos of her ulcer, it makes me still feel sick. He told me I "should delete them". Which I can tell you right now, I won't be. He was also very surprised it was not closed over yet! Well it was a massive ulcer, what does he expect?

Here is yesterday's photo

We re-dress it on Tuesday.

Update

2011-05-17T19:35:00.019+10:00

After spending the past week emailing photos to the Children's Hospital so they could monitor Violet's ulcer without us coming in all the time. This morning we went to have Violet's ulcer checked as the healing has come to a standstill again and we were worried about the lack of slough coming out considering there was still alot in there and not much exudate on the dressings. Hospital were also concerned as we were about the hard area at the bottom of the wound that looked like it may need debriding.

They mentioned on the phone yesterday they were going to try seaweed dressings, but on arrival there today, they didn't mention these and instead decided on using Acticoat Silver Dressings.

They are using Acticoat 7 which can stay on for 7 days but they want me to check it on Friday to see how it's looking and email them a photo.

They told me I wouldn't need to wet the dressing down as it was a 7 day dressing, but I have big doubts it will stay moist until Friday when they have put on the silver dressing, then allevyn foam and then hyperfix.

From all I have been told about Acticoat by other people I know that have used it is that it needs to be wet 3 x per day.

They didn't decide on debriding it today as they feel the hard section should come away on it's own eventually.

She does now have Cellulitis as suspected last Wednesday and has started AB's again today.

They dressed the ulcer and then after realised they had not swabbed the ulcer and had to remove dressing swab and re-dress!

Trouble is they used saline both these times to activate the silver dressing which apparently when I got home and read more about the dressings online clearly states DO NOT USE SALINE, only use sterile water. Apparently the chloride in the saline does not allow activation of the silver particles.

I rang and advised the CNC one of which is trained in wound management that they had used the incorrect water on it.

So when Violet got home from school I had to re-dress it again using the appropriate water, which felt like a day wasted as the dressing she had on was not doing anything! In relation to my previous comment about it not being moist enough by Friday still, on taking it off this afternoon to re-dress, there was hardly any moisture left in the dressing!

Here is today's photo.

Budding Artist Perhaps

2011-05-14T16:19:00.004+10:00

As I mentioned in a post back in April, Violet submitted artwork representing her school to the local Hawkesbury Show for the "Students with Disabilities" class.

Was so exciting just to see her artwork displayed at the show this weekend and an added bonus today when we went to the show to see she had received second place.

This years theme is "International Year of Forests"

She receives 2 ribbons and $15 for second place.

Violet doesn't understand what she has won and achieved...hoping things may sink in a bit more for her when the school will no doubt present her ribbons to her at assembly this coming Friday.

Update

2011-05-11T19:20:00.012+10:00

Seems I may have spoken to soon about my hospital free week for Violet this week. Had a phone call from the Orthotics dept late last Friday to ask if Violet could come in sooner for her new AFO fitting as the Orthopaedic Surgeon would prefer her have it sooner rather than later.

So, today we went in early. First I went and got more supplies for Violet's pressure ulcer from the CNC and I showed her a photo from yesterday of Violet's ulcer and she then wanted to remove the dressings to check on it. It is looking alot better still, but also still a few weeks could even be a month or so before any weight baring can be done. Hard to say really as it still has a long way to go and also the healing could start slowing again, but I am remaining positive that things will keep going forward with the healing and that she will be back on her feet very soon.

The CNC did mention she thought it looked like it may have cellulitis but the Orthopaedic Surgeon thought it looked okay, so have everything crossed that he is right and the inflammation is not cellulitis. They also mentioned that if the remaining slough in the wound did not come out they may have to debride that area again. Here is todays photo.

After that we headed down to Orthotics to pick up her new AFO and Violet was absolutely over the moon getting it and finally out of a cast for the first time in 3 months and having two shoes on! Trouble is now she thinks she is allowed to walk and I have had to again explain that she is unable to do that for a bit longer as her sore needs to get better first.

They have put some joints in the AFO for when she is better and can manage a hinged AFO it is there so they can easily add them in. They have also adpated the AFO to accomodate the sore so no extra pressure is applied to that area.

It has been a very big step today having the AFO and Violet sure knows it, she came home from school all excited about showing and telling her dad she was back in her AFO...couldn't wipe the smile off her face!

Update and Dental Appointment

2011-05-06T16:35:00.006+10:00

Went in for yet another wound dressing by the hospital again today and got to catch up with Violet's Orthopaedic Surgeon while there as he has been overseas for 2 weeks and he wanted to see how Violet's ulcer was healing. He said it was alot better but she is still a long way off walking.

We pick up her AFO on 16th May and sadly looks like she will not be able to weight bare then either :(

For the first time in months I have a whole week next week of NO hospital visits (for Violet anyway). They are happy for me to still do her dressings and if the ulcer starts getting worse I am to bring her straight in. Didn't like hearing that, as I was hoping from now on things would only get better.

Dental appointment went well. She had a lock jaw from not wanting to open it for the dentist but aside from that her teeth are going well. Would like to try dental x-ray at next appointment.

Tired of talking feet

2011-05-02T13:55:00.006+10:00

Violet had her ulcer reviewed last Wednesday and then again today. I have been cleaning it still inbetween as they have put on a removable back slab now, so I can access her foot when needed.

Good news is...it is finally, slowly getting better! It's slowly getting smaller, has less fluid draining from it and new healthy tissue is growing from the bottom of the ulcer as it should.

There was mention of it over granulating last Wednesday, but seems to be okay now.

Here is Fridays photo and here is today's photo.

Violet finally went back to school on Friday after missing so much of Term 1 due to this op and unexpected post op problems.

Look forward to her continued healing and when we can throw the cast away and do some weight baring...10 weeks tomorrow since she last walked.

Back to hospital for review of her ulcer on Friday.

Update

2011-04-21T17:30:00.016+10:00

Arrived for Violet's re-dressing of her ulcer yesterday in the Burns Unit and seems that they had booked her in for next Thursday instead of today! They said they were unable to do it and let me tell you I was furious! I told them it wasn't my problem they had booked it on the wrong day and there was no way I was going to wait 1.5 weeks between dressings! I also added this ulcer was the hospitals fault to start with so they needed to do something now! They told me to go to Orthopaedics and get it re-dressed there, which I said was ridiculous as we had been referred to the Burns Unit as this ulcer really is out of the orthopaedics territory!

Well, you can guess what happened...I had to go see Orthopaedics. They were very surprised to hear Burns Unit would not still do it for her and just squeeze her.

On taking the dressing off from Monday, the Burns Unit didn't put a foam dressing on it to soak all the slough from her ulcer and it sat there the last 3 days festering away and caused more maceration and damage to her surrounding skin! Not happy!

So they decided to keep her back slab off and give her a night splint for her to wear day and night over the long weekend so I can access the ulcer for cleaning. Trouble is it's not sitting right and applying too much pressure to her ulcer still which defeats the purpose of using it. I am re-adjusting her foot constantly as her heel keeps lifting out of it and repeating this.

She was also casted for her new AFO today, even though they really didn't want to put anything over her ulcer. They covered it up well and cast anyway. She will have her new AFO in 3 weeks. Hopefully by then the ulcer will be healed alot more and be able to weight bare. She will be put back in cast on Wednesday.

You will never guess what design she chose...spiderman featuring red AFO with webs all over it...who says I need a son...she gives me the best of both worlds.

Here is Mondays photo and here is yesterdays photo (before being cleaned).

We go back on wednesday for them to assess and re-cast.

Child Development Unit

2011-04-19T19:06:00.015+10:00

Today Violet had her Child Development Unit assessment.

She was referred to them to also assess Violet's behavioural issues.

Was a long day!

The end result for me was hard to hear out loud...a confirmation of what I already knew. Violet at nearly 6 years old is at the age of a 3-4 year old and 2-3 year old in some areas.

They feel she will never catch up to her chronological age in development due to her under developed brain, especially on her left side and all her underlying congenital neurological issues.

They suggested we may have to look at alternative schools for Violet that can provide the structured support she needs.

Of course I will live in hope she does somehow catch up, but it is another reminder of just how lucky we are that she can function as well as she does, given her situation.

In other news:

Violet had her VAC dressing changed yesterday and they have decided to leave it off until Thursday and see what is looks like then. They re-dressed it with a gel dressing. It looked alot better yesterday, signs of granulation and new tissue on one side of the ulcer, the most positive step forward in healing I have seen so far...hoping that continues.

Blocked VAC

2011-04-16T10:39:00.009+10:00

Late yesterday afternoon at 3pm, Violet's VAC dressing started alarming and saying that it had an "internal device error" therapy stopped. I rang the technical advice number for the VAC and they advised she would need a new VAC.

If the VAC has not been working due to this problem for 2 hours or more, you require the whole dressing to be changed not just the unit itself. They normally courier these out the units asap from Lane Cove but by the time I got through to one of their technicians it had already been half an hour and the courier would hit peak hour making it go over the 2 hour limit. So I suggested they courier it to Kids Hospital and I would meet them there.

On arrival, the nurses in the ward were doing handover and by then only had about 20mins before 2 hour limit was up. I was not impressed. I turned into what I like to choose to call proactive and was not at all impressed with them taking their time to do handover when they knew we were coming and the situation, and I decided to let them know about it!

Finally they put the replacement unit on and it wasn't keeping the negative pressure it needed to. Only sitting at 55 when it needed to be 125. The unit has two sections of tubing one from Violet's foot to a joiner and then one from the joiner to the unit. They replaced the tubing from the joiner to the unit. It stabilised and were waiting out the front of the hospital for Dave to pick us up and it dropped again.

So back in we went and by this time it was again alarming and the nurse really didn't want to deal with it. She even said we may have to go through emergency! Which I thought was crap, as the Burns Clinical Nurse Consultant had told me to go to the Burns & Plastics Ward if anything went wrong and they would sort it out for us. Seems wasn't the case last night. She rang emergency and had to explain to them what a VAC dressing was and they said they were unable to help and would only have to end up getting someone from that ward to attend to it anyway.

By this time it was well over 2 hours since the unit had stopped. The nurse decided she would re-dress the ulcer without the VAC and on Monday get it put back on. Then she changed her mind on opening the dressing she found a blockage of blood at the tubing near the ulcer. She changed the tubing from Violet's foot to the joiner and all was back to normal.

Back on Monday to have it re-dressed properly and I will certainly be telling the CNC that we were going to be sent through emergency for the dressing...not happy!

VAC Dressing

2011-04-14T13:56:00.014+10:00

On Tuesday Violet had her VAC dressing put back on...I can tell you...I have not missed carrying around this machine everywhere with us and the noise it makes!

We go back on Monday to have the dressing replaced.

Violet is very self conscious about the VAC but I always put it under the wheelchair and cover it with a something and all you can see is the tubing coming out from under her foot. I think she figures it's just another reason for people to stare more than they normally do.

Instead of being confined to the house and to take her mind off her current situation today I decided to take the girls out for breakfast to a small cafe where I knew she wouldn't get any stares.

Here are a few photos of my gorgeous girls having their drinks at brekky:

And in other news: Even though Violet has felt awful these past few weeks, she has still managed to submit artwork representing her school to the local Hawkesbury Show for the "Students with Disabilities" class. Will be so exciting just to see her artwork displayed at the show. This years theme is "International Year of Forests". Here is her entry:

Update

2011-04-11T20:18:00.008+10:00

Another pressure ulcer review and re-dressing this afternoon.

They decided to debride it again to get the slough out of the ulcer, as the methods they have been using for the past 4 weeks are still not working.

While debriding he said it was alot deeper now and showed me how it had gone through an additional cavity inbetween her bones. Now comes another huge risk of bone infection. He showed me her bone, I was horrified! He would have liked to have seen the ulcer bleed more as bleeding is apparently a good sign of new tissue but it hardly bled at all :(

They had plastics team review her for them to surgically close the ulcer. They decided that they would put the VAC dressing back on tomorrow and a few weeks down the track will surgically close the ulcer. They said a skin graft would not work on her ulcer in the position it is in (under her foot) They are thinking of cutting two skin flaps in her good surrounding tissue outside of wound and joining them up.

So frustrating - 7 weeks tomorrow since orthopaedic surgery and no weight baring and no post op physio and rehab! 4 weeks since finding this crappy ulcer!

Here is today's photo...I took it without showing you right inside the wound itself, it's just not a pretty sight in there!

Update

2011-04-08T19:36:00.008+10:00

Yesterday, Violet had her bone scan and she was such a little legend. First part was at 10.20am involving injection with radioactive isotopes and a few sequences taken and then back at 1.20pm for the rest.

Some of the sequences required the gamma camera to be within 1 inch from her face, and she didn't whinge or get upset at all. Remaining still for them the whole time (some assistance to hold her head by technician during these) These were not quick, each sequence took alot of time varying from 2 minutes to 7 minutes each of being still while they took them. All up about 30 minutes for whole scan. They decided to do full body bone scan while they had the chance. I was so proud of her.

Good news we received today, the infection she has is confined to her foot so far and no bone involvement yet!

Today we were back for another dressing change and things are still not looking as good as I would have hoped by now with this pressure ulcer.

Here is the latest photo

They have never bothered cleaning between her toes and it had an awful buildup of crap and as a result now she has terrible skin breakdown between her toes and it absolutely stinks like the ulcer, so I asked today if I could clean between before re-casting. They let me, and they were surprised how much crap I actually got out of them. Why do they not look at doing this themselves?

She also has a sore heel still and after we asked they have again put comfeel dressing on it. They weren't keen at all, but I just said straight up...do it! It looks very much like the start of another pressure sore to me...I sure hope not, as we are still trying to heal the other one!

Update

2011-04-04T18:01:00.009+10:00

This afternoon back to the hospital again to check on Violet's pressure sore and have it re-dressed.

It is still very sore and has reddened more around the sore, under her toes and down the side of her big toe. When they touch her toes, it hurts all the way to her heel and she screams in pain.

Surgeon feels the reddened areas around the wound and toe area is due to increase in blood supply. I am not sure what to think as she is in so much pain and the nurse said that it still looked infected.

Oral AB's finish tomorrow. What also worries me is that Violet has been really tired, which is not normal for her. I am just hoping it's not a sign of worse things to come. I would hate for the infection to next get into her shunt system.

I just wish they would admit her already and pump IV AB's into her now!

Here is a link to today's photo.

Frustration City

2011-04-01T16:49:00.006+11:00

Went back to hospital yesterday to get Violet's pressure sore dressing changed and checked.

I had noticed the side of the dressing looked red and told the ortho surgeon who said that was normal. When we finally got in to see them, the nurse said that is not normal and that her whole foot was suggestive of Osteomyelitis (Bone Infection) so she was sent down for x-ray and we awaited the results.

Surgeon said it looked okay. The sore is very very close to the bone. He was advised by the same nurse to put a VAC dressing on it for 2 weeks at least. He thought that would be a good idea, so we were sent home with that attached to the pressure sore, with a few metres of tubing and a noisy machine to help heal her sore quicker.

Went back today to get the VAC re-dressed and on cleaning her sore, it started bleeding. They applied pressure for 10 minutes and it wouldn't stop, so they decided no VAC dressing today as it would continuously drain blood from her foot and went back to the old solosite gel and dressing.

I asked them to do a bone scan to rule out the bone infection as it doesn't normally show up on x-ray when it's in the early stages. They would not do it. So, we were sent home until Monday when we go back for them to check it again and put VAC dressing back on.

He even said today that he would be taking her off the AB's on Monday. I will not be doing that though, as her foot is still so red, swollen and sore that infection is still obvious and that's not just the pressure sore, it's her whole foot.

I am so annoyed and frustrated they will not listen and do the bone scan, as I have been right every other time! Think it will be time for a second opinion soon. I decided to go to her G.P on the way home and he has organised a bone scan, soonest I can get her in is Thursday.

Just given this surgeons past history of being wrong just about everything, I am not willing to sit and wait for the infection to be chronic before he decides on a bone scan.

For those of you that may be interested in seeing her foot now, here is the link to the photo on photobucket.

Update

2011-03-28T20:02:00.011+11:00

This morning started with another early morning trip to the hospital to check on Violet's pressure sore. On arrival the nurse we were supposed to see in Rehab was away sick. So they arranged for another nurse to check on Violet.

I told her I really want them to debride it today as it is now 2 weeks and it hasn't done this the natural way through the use of the gels and gel impregnated dressings. She agreed something else needed to be done and paged the orthopaedic surgeon.

He also agreed it needed debriding. So, they sedated Violet with Midazolam and gave nitrous oxide. Poor Emily was with me in the room as I thought this was only going to be a quick dressing change, so she helped console Violet during the whole process.

During this time, I heard the surgeon say to the nurse it is much much deeper than he had anticipated and "this is not good at all". I chose not to look at it.

He said after finishing that "he had failed us" and that "as they have caused this".

We have to go to the burns unit daily to get her dressings changed from tomorrow.

He told me once her sore heals that she will be left with a large indentation and would lose alot of feeling to that part of her foot.

In other news...school news:

I didn't let Violet go to school today based on Fridays episode. I organised an appointment with the prinicipal of the school today. My friend kindly offered to look after Violet so I could do this.

Well, his answer to the toileting incident on Friday was to finally bring out a communication book with a toileting roster in it, where the teachers aide will have to write down what times she takes Violet. I also asked her to write down how long the hoisting process takes, as she is taking far too long and I think this is having a huge impact on Violet.

He then basically moved on as if that was all there was to say about it. I brought it up again, that they had a duty of care and failed and they had denied Violet of her basic human rights. He did not agree. He said all children have accidents. I said Violet is depending on an adult (her aide) to toilet her and she had never done this in all the years of being toilet trained. The fact it went unnoticed was a whole other issue.

He claims, I have told him that I want the aide gone because she is pretty and wears nice clothes...complete lies! I have told him that wearing the shoes that she has been wearing and short skirts are not practical when hoisting and being an aide for a child with special needs.

He claims, all the staff feel threatened by me. This I don't understand. I have never been threatening in any way.

He claims, I have called all his staff liars. I only said Violet's teacher was lying about taking her out of the wheelchair in the classroom week before last as Violet had told me she had 2 teenager girls that were in the classroom doing reading group had helped take her out too. Her teacher claims she only took her out. Hard to believe when Violet weighs 26kg's and I have enough trouble lifting her AND Violet told me who took her out. She is to remain in her wheelchair all day until further notice from the hospital as they well know.

He claims, I have threatened him. I asked him in what way and he said that I have told him I would go over his head if need be.

Well of course I will write letters etc if the school will not listen to me and give Violet the care she needs and deserves.

I told him if he thinks I said all those things etc then we would have to start voice recording our appointments as I did not agree with him on any of his claims. He said he already was writing it all down today. I said you haven't asked for my permission to do that, which he answered with, you are in my office so I can do that anyway.

There is one thing I can not stand and that is people using bits and pieces I have said and using them out of context.

He even said that Violet would probably have another toileting accident as most children do.

He said the staff were all scared of me and that I need to build a bridge and meet them half way. Also making sure I greet all the staff when at school.

The aide does not apparently have to acknowledge Violet as they all say good morning as a class.

Apparently, the aide is just a teachers aide, not special needs teachers aide.

So, now I don't know what to do. I was in tears after all those accusations came out about what he claims I said.

I even had a call while at hospital this morning saying that the aide was not able to come in today and that Violet was still allowed to come to school but they would need me to do the toileting.

She will not be attending school for the rest of this week anyway due to her dressings she needs and the meds to do these.

I think looking at a new school and maybe a private school is the next step.

Are you for real?

2011-03-26T12:36:00.019+11:00

Friday afternoon, Violet came home from school saturated in Pi$s.

She has NEVER done this since being toilet trained unless she was having a seizure/post Botox and it sure as hell wasn't either of those reasons!

I rang the Principal when I got home, but no answer. So I rang the Disability Itinerant Support Lady from DET and she rang the Principal to let him know and then she rang me back.

I asked her if the principal had apologised on behalf of the aide and he hadn't! This disappointed me further.

She said he would get the teachers aide to take her to the toilet more than she does. Well at the start of this week, the Principal had already advised the teachers aide to toilet her more often as I told him Violet was holding on and busting when she got home from school to go to the toilet.

I saw the teachers aide at 1pm Friday when I was at the school administering Violet's AB's (as I don't trust them doing that) and she said to me she would be taking Violet to the toilet at 1.40 when they had their next break, to see if she needed to go. Well, Emily and Violet both told me she didn't take her! Maybe the fact that it takes this aide close to 1 hour to hoist Violet onto the toilet that makes Violet hold on instead?

Thru my tears...I told her I was at the end of my tether and they have a duty of care to my child and they had failed! I also said the public school system is failing her miserably! I don't know who to turn to, as I seem to be banging my head against a wall and no one is willing to help me. I seem to have no rights as a mother. I told this Disability Itinerant Support lady that I felt she was on the schools side, being DET staff aswell, when she should be a mediator between us both and remain neutral.

I could not stop crying Friday night as I feel I have failed her as a mother, leaving her in their care, when it is so damn obvious they are not coping!

I am trying to put in writing a complaint to the school, principals superior and the local MP, so any tips in letter writing would be greatly appreciated, as I feel too emotionally involved to write properly.

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Update and Incompetant Aide...Part 2

2011-03-21T16:25:00.013+11:00

We started this morning off by an early appointment to the clinical nurse consultant at the hospital checking and re-dressing Violet's pressure sore. She wants us to re-dress it daily now.

She told me when that dead layer comes off, it will leave an awful crater before trying to heal again. I asked her about silver dressings that are available and help wounds heal alot quicker. She said once this layer comes off, we can look at possibly using those. We go back again on Thursday for her to review.

Violet is complaining of heal and forefoot pain still and I again told her this today. She said she would mention it again to the surgeon and see what he said and call me if he wanted me to bring her back in. But...no phone call. So they better hope all is okay under there, as they won't be re-casting until Thursday week!

Today, Violet also went back to school for the first time since finding her awful pressure sore.

We arrived at the school just in time from the hospital appointment and her aide finally decided to show up. She went over and stood in front of all the other K/1 Class without even saying or acknowledging Violet, then finally she went and stood behind Violet's wheelchair. Meanwhile Violet was trying to tell her about how her foot was and she didn't even bother to listen or interact with her at all. She hadn't seen her for a week...you would think she would have acknowledged her at the very least.

She is still wearing inappropriate attire including the heels! I saw the Principal after she took Violet to class and asked him what was happening with her shoe situation. He said he had certain avenues he needs to take to deal with it and he was working on it. Well, I have been waiting for weeks already...how long do I need to be patient for?

Well, needless to say I came away from the school very frustrated. When I got home I decided to call Violet's OT from The Cerebral Palsy Alliance and let her know nothing had changed with the aide.

She has also been given 4 hours training (1 hour per day over 4 days) to use the hoist for toileting and still has the nerve to say that she has received inadequate training, even though when asked if she would like to try it herself sadly declines to do so.

OT said she would call the Disability Itinerant Support Lady from DET and see what was happening.

Meanwhile, I rang the principal to ask just what these avenues were that he needed to wait on and go through. I mean if someone is wearing shoes that are not OH & S standard, surely they can just tell them to wear the appropriate shoes or go home. I want Violet to be safe and if she is being looked after by someone that is not being safe for her own sake, what hope do I have of ensuring Violet's safety.

He said they needed to go through the DET's Staff Welfare Person and go from there. He could not tell me how long this process would take.

I said I may just have to keep Violet home where she is safe until the aide has the proper shoes. He said I could not do that as I would be done for truancy. Well I doubt this would be relevant if my child is in an unsafe environment.

He asked me to bare with him. I told him I didn't need the added stress they were causing me in my life as it's not only Violet's problems that cause me stress but it also has an effect on my own health problems. I really don't need this.

I also added if he didn't sort it out, he would leave me no choice but to relocate her to a different school who would give her the support she needs and deserves.

I told him I did not like the current aide as she really is not confident at all with Violet and that she makes no effort to have a relationship or rapport with her and that I would prefer a new aide.

Seems the school saga continues...

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Pressure Sore Review

2011-03-17T13:05:00.013+11:00

This morning we were back to the hospital to check on Violet's pressure sore and have it re-dressed.

She has been complaining of other areas underneath her cast being sore (heel and forefoot) but the surgeon said they have padded it so well, there really shouldn't be anything there causing another pressure sore...well all I can say is I hope he is right!

On checking her pressure sore, it looks about the same as Monday except the blackness has lessened and changed to different colours. Surgeon says its about 1mm deep so far. They applied more gel and re-dressed. They have asked if I can re-dress it every 2 days. I told them I don't think I can do it. So hoping Dave can do it Saturday and have organised for her GP to do it every 2nd day after that.

I have taken a photo of it but of course didn't want that to be the first thing anyone sees while checking Violet's blog, so instead for those of you who are curious to see and have a strong stomach (if there is any?) I have posted it to my photobucket account for viewing, here is the link.

I just have everything crossed that this thing doesn't get infected! She has already been feeling very unwell.

After another bad night last night, I am still thankful to the pharmaceutical companies for morphine and valium.

Another setback

2011-03-14T19:33:00.013+11:00

Today I decided to contact the hospital as Violet is still on morphine after 3 weeks and valium for her muscle spasms and I have been very worried as she is still in so much pain.

They asked me to bring her in...

Her surgeon said that he really didn't want to remove the cast they put on Thursday, but ended up listening to me and thought he would have a look.

Well, thankfully he listened to me! The surgeon and his teams jaws dropped in shock...poor Violet has a massive blackened pressure sore on the sole of her foot below her toes, measuring approx 6cm in diameter. I was in shock on seeing it too! Surgeon said I better sit down before I fell down.

I thought the blisters were bad enough on Thursday. This was awful seeing dead tissue on my daughters foot! No wonder she still needs the morphine!

They treated it with a gel and dressed the area and then padded it thoroughly before recasting in a fibreglass cast only. The surgeon said he was so very glad he had listened and taken the cast off. To think if it had been left longer, when it is this bad already.

He had another surgeon there that I did not recognise and he was suggesting debriding it while Violet's surgeon was saying they don't normally do that. So its anyones guess who is right and which way is best to manage this.

He kept saying to his team after that he was so glad he removed the cast and that the patient is always right. I added...a mothers intuition is always right too!

They cut a peep hole in the cast where the sore is, with only the dressing showing, so they can check on it without removing the whole cast unless needed. So I have decided to keep her home from school for now.

They have advised 6 weeks at least to heal.

We go back on Thursday to get it checked by surgeon again.

I was in tears all the way home.

Orthopaedic Surgeon Appointment

2011-03-10T21:28:00.022+11:00

This morning Violet had her post op orthopaedic appointment.

As she had to have the cast split due to swelling last week, the Orthopaedic Surgeon wanted a new cast to be put on today and get her foot in a better position, as he was not happy enough with it. He also said she had quite alot of swelling still and to definately keep the leg elevated as much as we can to help her relieve this and in turn help her heal as quick as possible.

So, she was given some nitrous to help while they removed the cast. She was not a happy girl!

On taking her cast off, the incisions were a lot bigger than I had antipated and she has a massive red blisters near incisions that started leaking like a tap...it really made me sick seeing her in that state. I mean I have a pretty strong stomach, but seeing your child like this, when you have

opted for this corrective surgery, makes you question it all.

I couldn't see the incision under her foot, as what I had seen already had been enough.

In the photo below, if you look below her big toe, you will see the 2 k-wires in her foot hooked over...

In this photo below, showing some of her incisons and the awful blisters that were leaking like a tap, quite a high pressure tap...

No wonder she is still exsisting on morphine and valium. They gave me a script for more morphine as we ran out last night.

I really hope these blisters heal as soon as possible and we avoid any infection.

Surgeon will be taking the k-wires out on the 24th March.

Incompetant Aide

2011-03-08T19:01:00.021+11:00

Who would have thunk it? Um...me!

You know when you meet someone and you have that gut feeling and that it's not going to work out?

Today, Violet went back to school.

Let me fill you in on her aide...she dresses very smart and in heels. She looks more suited to a Department Store like David Jones. She looks great...but it is totally inappropriate attire for being an aide for a child with special needs. It surely would not comply with OH & S policies and is not practical!

Yesterday we had hoist training at the school for Violet's aide and myself in case the aide is sick and they need someone to "fill in". I have offered to do this, as I would feel so much better knowing Violet has the proper care she needs.

Well, the aide could not have been more disinterested in this training! She really did not try to be enthusiastic at all, even choosing to stand outside the disabled toilet instead of getting in there to see everything she needed to do. She even asked the OT from the Cerebral Palsy Alliance to come in today to show her how to do it all over again. Well, she wouldn't have needed this extra training had she actually tried it herself yesterday during the actual training!

She was wearing her open toed wedge heels and the OT told her to wear more appropriate foot wear, which she just muttered "oh right". She has been told before by the Principal but still has not changed her ways.

I arrive at the school this morning to see the Principal to go through all the instructions for Violet's care. I am then standing at morning assembly with Violet when the aide shows up and she then says to me "I'm really worried about the hoist" and "I don't think I can cope pushing Violet in her chair, could I call you to get you to come in a help me do this?". She hadn't even had to push Violet until today and she was already trying to get out of it! I was so shocked! I just had no comeback and said yeah.

As they all went off to class she pushed Violet but asked me to carry her schoolbag, which I did. I got Violet settled into class and waited for the OT to arrive for the additional training for the hoist.

While waiting, I decided to mention to the principal about the aide asking me to come in just to push Violet around for her. He was not impressed and said that would not be happening and that if the aide didn't feel she could cope she should tell him.

Took them 50 mins to do to hoist training...remembering Violet was in the hoist for this training and she was not happy by the end of it. Once they came out Violet's OT again mentioned about appropriate foot wear for work and the aide said she didn't own any flat shoes. The OT then said well maybe you should go buy some for $20 so you have the appropriate foot wear. I then settled Violet back into class and left.

I then go home and try to get a few things done while Violet is not at home, while waiting for the school to ring...

Sure enough the phone call came at 1.10pm and they said Violet was crying in pain with her foot/leg. I went to see her and picked her up. I asked her "Do you need to go to the toilet?" and she said "Yes".

So hard to figure out if she was just in pain with her foot/leg or she needed to go to the toilet and that was why she was crying :(

I really can't see this aide staying on with Violet, she just doesn't seem aide material to someone like Violet.

Thank you painkillers!

2011-03-04T13:53:00.006+11:00

This morning we were back to the hospital to pick up a sling for the hoist Violet will be using at her school when she goes back. She is supposed to be going back to school on Tuesday but we will have to see if her pain is being managed well enough first.

Who would have thought orthopaedic surgery would be this painful! I mean I knew it would be to an extent but she seems to be in more pain post op than both of her brain surgeries so far and they are painful enough!

She is having lots of muscle spasms still and in turn we are having very sleepless nights. She is still on morphine and today we picked up some Diazepam from the hospital to help with her spasms. I have felt them myself and they jolt her whole leg and also can feel her leg throbbing, the poor thing.

I have been existing as a zombie walking around. I was very light headed and ready to faint last night after almost 2 weeks of nearly zero sleep.

Split Cast

2011-03-01T18:23:00.003+11:00

After yet another terrible night in pain and seeing Violet's toes swell to the size of an obese person, we decided to ring her Senior Physio at the hospital and she asked us to bring her in.

She decided to split the cast. They normally do this for orthopaedic surgery. So she cut the front of the cast to relieve some of the pressure and bandaged over the cast, covering the very slight gap she had made.

She seems to still be in alot of pain, so hoping with elevating and time she will start to feel less pain.

Surgery

2011-02-26T21:38:00.043+11:00

On Tuesday 22nd February, Violet had her long awaited and needed leg and foot surgery.

She was fasted from 7am and we arrived at the hospital at 12.45pm. She finally went into theatre at 2.15pm and we finally got to see her again at 7.00pm in recovery, so a very long surgery.

...waiting to go in

...in recovery

Surgeon changed a couple of the planned procedures as once he was in there he realised they weren't going to be enough. There was alot of swelling!

The procedures ended up being:

Steindler Release = Plantar Fascia Release

Tendo-Achilles Lengthening

Tibialis Posterior Lengthening

Abductor Hallucis Lengthening to help with Metatarsus Adductus

Medial (foot) capsulotomy

Hiroshima procedure =Transfer of FDL and FHL to the dorsum of the foot

In recovery, he said to us that even though he had to change a few of the planned procedures, he is unsure whether this op will be enough.

I was very thankful that she had the epidural in for the pain management which was a concoction of Fentanyl and Clonidine. She still required additional pain meds on top of this.

They took the epidural out on Thursday which one of the anaesthetists was not impressed about when he found out, as he said she really needed it in for 72 hours minimum.

She was very sedated the first day and when she did finally awake to talk the first things she said were "Can't sit up" not that she tried of course but she must have just known she couldn't feel like she could (having the epidural in). She then added "need do a wee after this" again could not feel this sensation but knew that she hadn't been for so long and assumed she should be going...I then had to explain a catheter to her which she didn't seem to mind until a few days later when she no longer had the epidural in and said what's that in my ..... and was trying to pull it out!

On 23rd and 24th, she developed high temp, was tachycardic and oxygen saturation dropped to 79 and required hours on end of oxygen...

After epidural was out, they started her on Oxycodone and Diazepam, + Nurofen and Panadol. So thankful for the Diazopan as this helped relieve her muscle spasms which were waking her every 2 minutes.

She abused the nurses and therapists constantly! Was very embarrassing and when she whipped out a swear word a few times and in context, I wished the ground would open and swallow me up! She sure must have been in pain as it was constant verbal abuse to them all. Spose the fact she has spent the past 5 years in hospital with ops, appts, therapies etc she is not a trusting soul.

After seeing all the blood come through her cast, we were glad to hear that on Friday they would be putting a colour fibreglass layer to cover this. I had visions of her going back to school in a few weeks and scaring all the kids!

On Friday, we had a lovely delivery of gorgeous flowers, teddy and balloon for Violet all the way from Western Australia. These were from the lovely Debbie and her son William who recently had major surgery for his Cerebral Palsy. It really brightened Violet up! Thanks Debbie and William x

She was discharged today and has ample pain meds to keep her comfortable at home.

We have alot of physio starting now and the more intense, once she is out of the cast.

She is non weight baring for the full 6 weeks and then will have her k-wires out and cast off , she will then be casted for a new AFO and then be re-casted in a fibreglass cast for weight baring a further 2 weeks.

Once she starts weight baring again she will need a walker to assist and they have warned me she may regress before any progress is seen.

We have Orthopaedic Surgeon review in 2 weeks.

Thanks for everyones messages of support all week, we have really appreciated it x

Funding Review

2011-02-18T18:37:00.010+11:00

This morning we had Violet's funding review meeting.

It went really well and we all agreed on the application both now and post surgery aide time. Now we await the departments answer...wish us luck!

In other news:

Now only 4 more sleeps until Violet's surgery...eek! Trying to remain calm and get everything in place for the family while we are in hospital and when we get home to make life easier.

Most of the equipment is sorted for home now which is great and the school are chasing a few more items for them to use once she is back at school.

My lovely new friend at school who I only met late last year...such a gem of a person and so glad to have met her, kindly gave Violet some great pressies today for when she is in hospital...thanks again! x

Neurologist Appointment

2011-02-14T19:14:00.012+11:00

This afternoon Violet had her Neurologist appointment.

Pop a bottle of champers or whatever you all drink out there, as it has now been 1 YEAR since Violet's last seizure and given that all hers end up status epilepticus, that is so damn good to hear Epilim has made the world of difference for her! After 3 years of her having epilepsy, it's great to have them finally under control!

He is concerned about her daily headaches and will be talking to Violet's Neurosurgeon to see what his thoughts are on these. It may come down to medicating her daily with something to help them instead of constantly using Panadol or Nurofen...mainly Nurofen as the Panadol does nothing to touch it. He is also wondering whether ICP monitoring would be worthwhile to see if she does have any extra raised intracranial pressure on top of the excessive pressure she has regardless of her shunt, but I would prefer not to as it is an invasive procedure that may cause more problems.

So we await to hear their decision on what the next step will be.

Getting so close

2011-02-10T13:14:00.008+11:00

Only 12 more sleeps until surgery...

This morning Violet had Pre-admission for her upcoming leg/foot surgery.

We of course did the normal....chatted to the Anesthetist, Orthopaedics and then went to have bloods done.

The op is 2.5 hours + time going under GA and recovery time. They told me to expect 5 hours before I could see her again.

We talked about infections risks both with surgical sites and with an epidural in, pain management, recovery etc.

They said it would be between 6-9 months before any progress was seen and 1 year to be fully rehabilitated...so it sure is going to be a long road ahead, but have to stay + this is going to work and hopefully it will all be worth it.

As for the bloods, they are normally more of an issue once your in "the room" but today she started the screaming and crying as soon as we entered the waiting room and I mean SCREAMING! I tried to calm her down (more so for the other children waiting) but it didn't help. Had the normal holding her down for the bloods and screaming at the blood collector "I tell you it hurt in minute".

Now trying to build myself up for the next 12 days in preparation mentally, physically and emotionally for this...

School may just redeem itself

2011-02-07T15:59:00.014+11:00

This morning I had to drop off Violet's wheelchair to the school for the staff stairmate training. When I dropped it off to the Principal we also had a meeting about Violet and Thursdays debacle.

He assured me this would never happen again (Damn straight it better not!) He said he was extremely unhappy about what had happened. He has also now extended Violet's 1 hour per day aide time to 3.5 hours per day and is going to apply for her to receive a full day aide time in the appeal next week. I have to attend this appointment and sign off on her additional needs that are not being met and also the additional needs she will have post surgery...wish us luck!

He said the Disabled toilet will be finished shortly.

He would like me to come into the school on Friday to meet Violet's teacher aide...which I am looking forward to.

I did also contact the DET Disability Itinerant Support Person this morning and she told me he had let her know this morning about what happened on Thursday.

So, sounds like they have started to move forward and acknowledged that the aide time that Violet received is not at all sufficient. Here's to more positive school experiences and in turn posts!

School Saga...part 2

2011-02-04T16:18:00.032+11:00

As planned this morning I went to see the Principal about yesterdays "situation".

He started with "Violet went well at school yesterday" which I followed up with "well yes that's because she had her sister looking after her all day!" and "Why was Emily looking after Violet yesterday?" Then went on to mention that she had to toilet and be her carer for the day as no one else was doing it! I told him it was not acceptable for Emily to be taking on this adult role and that she needed to be in her own Year 5 class learning!

He said he had no idea that Emily was in the classroom with Violet. Which is hard to imagine as it's not exactly a huge school (69 students) and you would think he would have seen her in there or at least heard she was in there from the other teachers.

I also mentioned that Emily was left in the classroom on her own with the K/1 class for a few minutes...what if Violet had a seizure in that time while she was not in the room, the other children needed her or the fact that responsibility shouldn't be put onto a 10 year old.

He said he was not impressed on hearing this and would be taking it up with Violet's teacher as to why she had Emily in there. I said I thought this was discussed at our many appointments last year that Emily was not to be involved in Violet's care, which he agreed. I told him that I would be calling the DET Disability Support Itinerant Lady and he said he would notify her of this situation...hmm doubt he will do that!!

I also bought up the fact that Violet had fallen off her chair with a Vision Support Teacher at her side in the early morning which is bad enough on it's own but then not to notify me that she had fallen was not acceptable.

He again said he had no idea she had fallen! He has asked the office to advise him in the future of any falls she has (as outlined in her health care plan!)

He also said the staff had a 3 hour training session on Violet before she started! Which I said I think has gone in 1 ear and out the other. They have put her in the too hard basket already!

She also had a headache yesterday and they did not bother calling me to assess her or ask for her to be picked up. They have strict instruction that if she feels sick or had a headache to call me! Which they obviously didn't. They know it is one of the many first signs of shunt failure and they didn't bother to call me to even check!! I mean they are in the learning phase but you would think they would be over cautious if anything!

When she walks to class, she is made to line up last because she falls so easily, is slower etc but I feel that is wrong...disabled children shouldn't be made to be last when in their lives they come last in alot of things due to their physical disabilities. By the time she gets up to her classroom, all the other kids have hung their bags and are in the classroom...and where do you think the last hooks are for her to hang her bag? The furthest hooks away from the entrance to the classroom! So she has to walk the furthest out everyone to even do this!!

I was talking with a friend of mine at the school who suggested a great idea and that was to put name tags on the hooks so Violet could get a closer hook to the entrance, which she kindly offered to do for me. I passed on this suggestion to the Principal who said he would organise for the school to do it.

At 11.50am today, I get a call from the school saying Violet has a headache and she feels unwell. By this stage I am thinking is she really or are they just being too lazy to look after her! So, I said I would come and pick her up, so she was only at school today for 2.5 hours (they start at 9.25am)

I felt better knowing she was home with me, where I can look after her properly.

I am feeling very anxious about how the school will cope with her post op as they are having enough trouble now while she can still walk and do some things for herself...how will they cope then if they clearly are struggling to cope now? I have already offered to go in everyday after surgery (which will be 3rd week after surgery) to help with hoisting for toilet, lift etc. But they have told me they will have it covered...can't see that happening can you? How will they cope when the Kids on the Move transition funding finishes end of next week?

And the butting of heads begins...

2011-02-03T18:05:00.014+11:00

and it's only Day 2 of school!

Well, sad to say school today was not very good at all...

it started with the Principal meeting me in the carpark of the school this morning to tell me not to call or write any letters about the disabled toilet situation that I mentioned in my last post. Of course he must have found out that I had called the DET Disability Support Itinerant Lady yesterday to express my concerns over this not being a functional and safe toilet for Violet being unfinished. He asked me to promise him not to call or write to anyone and added that otherwise it would hold up the toilet being finished!

Unfortunately, the preschool staff were unable to be there today due to being understaffed at the preschool, so Violet had her Vision Support Teacher there for an hour and in this time she fell off her chair and has trashed her knee...I am not convinced this even happened in the classroom, it doesn't look like a carpet burn at all and there was alot of blood.

Then on picking Violet up this afternoon, Emily came out of Violet's classroom. I asked what she was doing in there and she said as preschool staff were not there, she was asked by her and Violet's teacher to look after Violet. This started from after first break this morning! So they left it up to a 10 year old girl to help toilet and look after Violet in general!!! I am fuming! I know Emily is capable of this but that is besides the point...I had numerous meetings last year which involved the school and DET aswell in which they mentioned that they would NOT ask Emily to help Violet with her needs etc. Then I come to school and find out they made Emily miss her own class and was left responsible for Violet nearly all day!

What will they do when she is in the wheelchair post op?

Of course the first thing I did was call the principal when I got home, but he had already left...surprise surprise. I do feel like calling the DET Disability Itinerant Support Lady, but he basically threatened me this morning not to.

So, tomorrow morning I will be taking this issue up with the principal! Failing that...I will be calling the DET Disability Itinerant Support Lady!

First day of Primary School!

2011-02-02T16:34:00.013+11:00

Today was Violet's first day of Primary School...

She had spent most of last night waking up to tell me she didn't want to go.

This morning she was feeling alot more happier about it all once she had her uniform on.

Luckily, we have that transition to school funding from Kids on the Move. I rang the Preschool to see if they had organised for one of her preschool teachers to be there today and they said they had been having trouble contacting the Principal to organise, but decided they would do a timetable regardless starting from today for them to be there. Instant stress release knowing it was all organised and she would not be having as much trouble with toileting, stairs, walking etc. with them there to assist.

She was happy to see Marie from preschool who was there from 9.15-11.30 and then Vicki from 12.00-3.30. She will have similar hours with her preschool staff for the coming 2 weeks and then that will be all the funding finished for the transition package she received.

The only negative point was that the new toilet block that has been recently finished: the disabled toilet has NO rails, NO step and NO toilet roll holder. They are planning on rectifying this but will probably end up loaning some equipment from The Spastic Centre in the meantime (trying to organise this asap)

I kept myself busy during the day to take my mind off her as much as I could (if that's possible!)I rang around lunchtime and checked with the Principal on how she was settling in and he assured me she was fine.

On picking her up this afternoon, she was completely exhausted...I asked how her day was and she said good. Driving home she said "I like Emily's school Mum, it's fun"...can't get a better response than that!

A presentation all about Violet

2011-02-01T15:55:00.015+11:00

Today at Violet's primary school, the Dept of Education's Disability Itinerant Support Lady gave a presentation all about Violet and her medical and physical conditions to give the kids a better understanding about Violet before she arrives on her first day of school tomorrow.

I helped out by giving her photos, drawings, info etc and she made the presentation. Emily was in one of the classes she presented this to today and she said it was really well received by the other kids.

Besides the general presentation, she gets children to participate aswell :

She gets 1 child to put oven mitts on and asks them to then open a popper (fruit box for other states), write with them on and put a shirt with buttons on with them to see what it is like when your hands are not doing what they should do.

She got another to wear glasses with one eye completely blacked out and the other with another vision impairment and asked them what they were able to see, how they would find their friends like that and how that made them feel.

She explained that everyone is born different, whether it be big feet, small feet, big eye or little eye etc.

She also talked about adapting some games when playing with children with disabilities so they can be fairly included.

She explained how crucial it was that if they saw Violet fall, hit her head, being sick , lying on the ground etc to get the teachers immediately.

It was all explained kid friendly and understandable for them. She covered all Violet's medical and physical conditions.

I have to say a much easier and effective way of explaining things and I don't have to write an introduction letter now, as this has been so effective!

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The good news and the bad news

2011-01-31T13:01:00.013+11:00

This morning we had Violet's pre-surgery measurements, goals for surgery, assessment and also has a review of the x-ray taken from Saturday with her Orthopaedic Surgeon.

Good news is: No break or fractures! Which I am so very pleased about!

Bad news is: Her foot is so bad now that he has decided to serial cast for this week, so we took one cast off to only have another put on, Violet was not impressed, but what can you do.

He said if we don't serial cast now then she will be in even more pain than expected post op. So we have her first serial cast on until Wednesday and then they will re-cast until Friday. So she will be starting school with a serial cast, I am sure the school will be thrilled to know this later today when I let them know.

Today we also heard in more detail about Violet's procedures for her surgery, as mentioned before they are the following procedures:

Steindler Release = Plantar Fascia Release

Decancellation of the Cuboid Bone to help with Forefoot Adductus

Tendo-Achilles Lengthening

Abductor Hallucis Lengthening to help with Metatarsus Adductus

Tibialis Posterior Lengthening

She will be obviously having incisions from her calf down for most of these procedures, bone cut out and also an incision under her foot, which sounds like torture.

She will be in the cast and K-wires for 6 weeks and then a further 2 weeks of casting once the k-wires have been removed.

This will be followed by intensive physiotherapy.

We have organised all the equipment needed post op i.e leg board, commode etc

During hospital stay, the pain relief will be administered via either Spinal Block or Epidural. ..which was news to me. She will also be sent home with either Valium or Endone (Oxycodone)

Really hoping this will all be worth it...in some ways I think I need the next 3 weeks to mentally prepare myself!

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First trip to ER for 2011

2011-01-29T16:27:00.008+11:00

Yesterday, Violet was in Emily's room playing when she started screaming and saying she couldn't walk. She was unable to weight bare and in turn walk on her hemi leg/foot. She was in agony. We decided to see how her foot went overnight and see if any swelling came up.

This morning it was the same and still no visible swelling. As she is still unable to weight bare and in extreme pain, we took her to hospital, suspecting it may be fractured or broken.

They x-rayed her foot and they couldn't see any obvious break or fracture. But they then added that as her foot is so badly deformed on her hemi side, it makes it hard for them to see any smaller ones. They are hoping it is only soft tissue damage.

They have casted her leg/foot and on Monday will be seeing her Orthopaedic Surgeon in the Rehab and Orthopaedic Combined Clinic for her pre-surgery measurements and also to review these xrays.

5 more sleeps!!!

2011-01-28T14:19:00.010+11:00

Only 5 more sleeps until Violet starts Primary School! I am hyperventilating as I type...

Next Monday she is due to go into the school for her 'Best Start Kindergarten Assessment' but she now has an appointment at the hospital at the same time to have her pre-operative leg measurements.

I called into the school on Tuesday to let the Principal know she would not be able to make the appointment at the school for Monday and he said that was fine and he would test her later during the week sometime.

While there he asked if I would like to see the alterations that are being made in the Stage 1 of the alterations that were suggested.

For her vision impairment, they have painted all the poles with yellow bands of paint, marked the edges of stairs, ramps, seats in the playground to name just a few! When you look through the school it is a sea of yellow from all the paint for Violet.

They have widened and concreted the pathway from the carpark to the office and then the office to classrooms as this use to be very narrow, uneven and was bitumen.

The ramp to her class is under way but will be ready in the first few weeks she starts school.

They have re-concreted areas of uneven ground elsewhere in the school.

Toilet roll holders moved down.

He is organising a Disabled Parking sign for the carpark, as I have had numerous issues with other mums parking there without a permit, in particular 1 mum. It has a disabled parking sign on the ground but he hopes with the added sign in front of the car park space, may help others see and realise it's only for permit holders.

I said to him that it would be great having the ramp in and then she would only need to use the stairmate once a week for Library. We have one of these at the school organised for her, but he said he is quite happy to bring the library to Violet and her class, so he may do that instead while she is in the wheelchair for those few months.

I am very happy with all these alterations so far and it makes me feel they finally taking Violet starting school there seriously!

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Moulding #4 and EUA

2011-01-20T16:54:00.020+11:00

We started out the lovely task of fasting from 7am again this morning, got to love being on afternoon hospital lists...not! Arrival to hospital at 12 noon and she was under GA by 2pm.

She did very well with her fasting, I tried my best to get to the hospital early to get a close park, entertain her in the hospital playground and the starlight room before going to day surgery. Distraction is the key for Miss V.

She did mention once we were admitted that she was thirsty and hungry a few times :( I just said everyone in the waiting room is and that kept her quiet for a little bit longer each time.

Of course once she knew the dreaded mask was going on, she was screaming and had 4 of us holding her down for the GA.

One of the other reasons for the EUA today besides the normal thorough check of both her eyes was to check the pressure in her seeing eye (right eye) as she has been having headaches for so long now and both her Neurologist and Neurosurgeon were concerned the reason may be an increase in the pressure she already has on her optic nerve in that eye.

Today Violet had a different Opthamologist performing the EUA and he met with me after to let me know these results and also ask me why she was not already wearing glasses when she is short sighted in her right eye.

Well, that has been my question for a long time as well but they have never bothered to give her any for some unknown reason. He thought it was ridiculous and he wrote a script to be taken to the Optometrist to get Violet some glasses. It was taken from her eye while under the GA so would be obviously best to get the reading when she is awake, but don't know how compliant she would be for that! Also not sure now at 5 ½ how compliant she will be in wearing them!

Great news is the pressure in the right eye has not increased! So no answers still as to why she is getting these daily headaches as yet.

Violet's new scleral shell should be ready in the next 6 weeks.

Neurosurgeon Appointment

2011-01-18T18:28:00.040+11:00

Today was Violet's Neurosurgical review.

Looking at her CT Scan from October and feeling her shunt reservoir today, he is quite confident that her shunt is functioning, which is always great to hear!

He showed me today how to depress the shunt reservoir and check that it fills at the right rate, not that I would want to be doing it often, but good to be shown how to do this properly if need be. Felt quite bizarre!

All being well she will be reviewed in 1 year.

Part of my appointment today involved a little mission from a fellow hydro mum in the U.S who started a website after she lost her son Gabriel to Hydrocephalus in 2005. This site is called Gabriel's Life and she has been running a sticker campaign.

Help us get a Gabriel’s Life Sticker on the set of “Grey’s Anatomy.”
Donate to Gabriel’s Life Sticker Campaign (www.gabrielslife.org) for $12. We will send you two stickers. Keep one and give the other to your neurosurgeon, take a picture of them with the sticker and email it Gabriel’s Life, we will post it to our site. A third sticker will be sent to a staff or cast member of ABC’s “Grey’s Anatomy” along with a copy of your hydrocephalus story as it is posted on the Gabriel’s Life site.

Why are we doing this?
We want more awareness of hydrocephalus within our community and the general public. This campaign will create opportunities for awareness on local and national levels and encourage the hydrocephalus community to think about solving the challenges of hydrocephalus in a new way.

Why does it make sense for a ABC and “Grey’s Anatomy” to care about hydrocephalus? Why should a Gabriel’s Life sticker appear on a prime time hospital television series?
The main character on ABC’s “Grey’s Anatomy” is a neurosurgeon, Derrick Shepherd, played by Patrick Dempsey. Because of the frequent failure of shunts (the dominant treatment for hydrocephalus) and the need for them to be revised, surgeries related to hydrocephalus and shunts are considered the “bread and butter” of neurosurgery. Because the Dempsey character would be very familiar with hydrocephalus (hydrocephalus has been included in two episodes) it makes sense that he would also know and support the mission on Gabriel’s Life. He would have and display a Gabriel’s Life sticker, on his locker, or laptop or desk. We are not asking that a storyline be created around Gabriel’s Life, we simply want the logo to be treated like a product placement on the set.

So, my mission was to give one of these stickers to Violet's Neurosurgeon in hope he would let me take a photo of him with the sticker and post it on Gabriel's Life Website all in aid of the sticker campaign but he opted instead to display the sticker in the hospital. He will be displaying it in the Neurology Dept which is still fantastic!

Instead, I will take a photo of the sticker in the Neurology Dept in hope that it may still help the campaign...

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5 Year Shunt Anniversary and One Special Angel

2011-01-16T11:08:00.011+11:00

Today is Violet’s 5 year Shunt Anniversary! Thankfully, another year has passed without the need of a shunt revision. As you all know this is something we do not take lightly.

You only have to read about yet another tragic loss, to see how serious this can be:

To me July 6^this normally a day for celebration for me, as it is my birthday but this day in 2010 it couldn’t have ended on a sadder note. While I was celebrating being alive after all I have been through recently, another little girl I know lost her life to Hydrocephalus...

This young girl’s name was T’keyah...

I met T’keyah’s mum online a few years ago when Violet was born and diagnosed with hydrocephalus.

Those of you that know me or are a fellow hydro parent know how much I am passionate about making people more aware of how serious Hydrocephalus is.

Hydrocephalus is such an awful condition. While shunts are a treatment for hydro, it is by no means a cure. 7 out of 10 shunts placed will require subsequent operations within 10 years and some more frequently.

Over time, shunts become blocked from the brains protein and debris passing through the shunt system, this can cause the shunt system/valve to malfunction. Then there is disconnection and shunt infection.

For myself and I would imagine other parents of Hydro kids, it's daily worry of when their child's next shunt malfunction will happen. For T’keyah this had happened way too many times in her short life.

This further shows the need for more money to be put into researching better management of Hydrocephalus and the Shunt Systems.

T’keyah was only 6 years old and passed away from multiple cardiac arrests as she was in surgery for yet another one of her many shunt revisions.

Needless to say her family are devastated and also have the added heartache of trying to explain to her siblings why her sister is no longer with them...certainly no easy task.

My thoughts are with them daily as they somehow try to piece their lives back together after such a massive loss.

Things are happening...

2011-01-10T19:37:00.009+11:00

As you are aware, we are awaiting on alot of things to be ready for Violet to start Primary School in only 3 weeks time! Apart from the obvious lack of aide funding, we are also waiting on building alterations! I had lost all faith that this had even been acknowledged by the school and DET and the also the necessity for them to all be done before she starts school.

Well, I happened to drive past Violet's primary school yesterday and guess what? They have construction people in the school, sections all cordoned off and have started Violet's needed alterations to the school!

From the road I can see they have started the most important thing to me and that is the ramp access into her classroom, awesome! Well, they haven't yet built the ramp but they are in the demolition stage and will no doubt now have to have it all ready for when the all Kindy's start on 2nd Feb!

I can also see they are doing other alterations to areas that were pointed out from Violet's OT Site Inspection!

I think I can see a teeny tiny bit of hope restored...my persistance may have paid off...

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Reflecting on 2010

2011-01-01T18:51:00.012+11:00

2010 was a big year for Violet and me...although truth be known 2011 will be even bigger...

One thing I am extremely thankful for in 2010 is that Violet has only had 2 hospital admissions! One for the worse seizures she has had to date and her other admission for Bacterial Pneumonia.

Violet started and finished Preschool and it has been great to see her benefit from this.

We discovered Violet's necessity for surgery to her leg/foot was alot more urgent than we initially thought - Here's hoping the surgery in February will help!

Violet started Riding for the Disabled - and she loves it!

I attended countless school and funding appointments for most of the year, only to be disappointed in hearing she would receive 1 hour per day aide time.

With the help of some extremely generous friends and anonymous donations, Violet received her very first wheelchair!

2011 is something I have been hoping would never arrive...the year Violet starts primary school. I know I had this anxiousness with Preschool but that is a much more controlled environment. I feel that I can't exhale at the moment, tight in the chest with anxiousness...wish us luck...

Genetics Appointment

2010-12-16T18:31:00.016+11:00

Today was our annual review in Genetics...oh the joys! This is our last official appointment for 2010!

She examined Violet as per usual. As some of you may already know, Violet has a very prominent enlarged abdomen and on feeling it today she could feel a lump but is not sure if this is part of her fatty overgrowth "as yet unclassified syndrome"or something else.

She feels we should re-scan given her increased risk of tumours and in particular Wilms Tumour and has opted this time for an MRI of her abdomen to see what is going on in there and also check on her organs in more detail. This of course will involve an MRI with GA, so we await to be called up for it. I hope it will not be too long as I would like to know what is going on now...I assume as she is well in herself and she hasn't rushed it through, that it isn't anything too sinister!

She was very against her having a CT scan for this, even though it would be over much quicker. She really does not want her subjected to any more radiation at this point given her increased risk of tumours and also the fact that she has had so many CT's already since birth I have lost count!

So that's 3 GA's booked for 2011 already...I did ask if she could possibly have this MRI when she has her eye moulding on the 20th January or even while under for her leg surgery but she said they couldn't as the wait list for MRI's under GA's is too long.

In the meantime the Geneticist is still on the search for answers as to why Violet is Violet...

She also wanted Violet to have some Clinical Photography by the hospital. So after we finished our appointment with her, we went down and saw the photographer. I really thought Violet would be her usual oppositional self and not want to comply to the photos, especially when this involves in having them taken in your underwear, but she surprised me and was a champion for the photographer.

Review after MRI of abdomen.

Oh and on the way out of the hospital who should we bump into but Alison and Ashlea...we have seen them there a few times lately, but was nice to see them both again of course x

Wheelchair has arrived!

2010-12-15T13:33:00.010+11:00

This morning we had our appointment at The Spastic Centre to take delivery of Violet's new wheelchair!

Let me tell you it's awesome!

There has been a minor hiccup with a measurement involving the seat width not being as wide as it should be but this will be rectified in January free of charge as it was there mistake.

Thank you again to all the generous donations we received to make this possible and especially to make this happen in time for her upcoming surgery.

Last Day at Preschool

2010-12-14T19:36:00.011+11:00

Well today is another day I have been dreading...Violet's last day of Preschool :(

This morning, I took a photo of Violet with the Preschool Manager and her 2 teacher's aides. When I asked Violet if I could take the photo in the morning or afternoon, she said morning. I figured this as by the afternoon she is so exhausted and uncooperative!

She enjoyed her last day and took her RDA Trophy in for her last news and all the kids thought it was awesome!

I was hoping I would get through saying my goodbyes to the staff and teachers aides this afternoon without tears....but that was not meant to be.

I had purchased a 1 hour massage voucher for the Manger of the Preschool and also for one of her teachers aides and for her other teachers aide I decided to give a different gift that I just knew would be more suited to her than a massage voucher.

As soon as I gave the voucher to the first teachers aide and thanked her for all she had done for Violet throughout the year, she started to cry and then in turn I started to and we just hugged...then I moved onto the Manager and the same happened again.

It was a very hard thing to do say good bye to the very people who have helped Violet so much this past year but also helped me overcome some of my anxiousness. I could never thank the staff enough!

Below is a section of the card I had typed to them today minus the preschools name:

You may wonder why I haven’t written this myself, well to tell you the truth I can’t...I would make too many mistakes as today for me is especially an emotional day. I know it is for most parents but for someone that is a parent of a child with special needs, it is that little bit more.
Words can not begin to express how much we appreciate all you have done to make Violet’s year at Preschool not only a smooth one but also an inclusive one.
It really has benefited her beyond what I could ever have imagined and I really feel this is a credit to you all and the Preschool.
Jacqui, you really do go above and beyond for all the children. I would like to personally thank you and also for the funding you have helped organise for Violet throughout the year including her transition to school funding.
For all that you have done, we would like to thank you all.
We will miss seeing you all and hope to call in from time to time. Hope you all have a safe and great Christmas and New Year.
Love Sarah, Dave, Emily and Violet

Riding for the Disabled

2010-12-13T19:11:00.004+11:00

Today was Violet's last Ride for 2010 and also her last week day ride. Next year she will be riding on Saturdays due to her being at school during the week.

After today's ride, they held a small Christmas Party for all the riders and it was really nice. At the end, they were all surprised with a presentation of their own trophies! I was so happy for Violet, as this is her first award for anything and I was so proud of her!

Funding Result

2010-12-09T11:06:00.003+11:00

Well, today we received the news about how much funding Violet will receive for primary school next year, and not surprisingly it's a measly 1 hour per day!

I really can't be bothered typing a huge post about this as I am majorly pis$*d!

Needless to say come Term 1 I will be asking for that review!

Preschool Sing-a-long

2010-12-04T19:43:00.014+11:00

On Violet's Preschool days last week (Tuesday and Thursday) They held a preschool sing-a-long at 2pm each day and even though I have attended them before, of course I just couldn't miss these ones, as they will be her last for preschool :(

Violet sat with her aide among the other children and did her best to sing along and it was really nice to see.

I am so glad I did go as they sang a song I hadn't heard them sing there before, a short version of "I am Australian" and boy did I cry on Tuesday seeing her sing to this chorus:

"We are one, but we are many

And from all the lands on earth we come
We share a dream and sing with one voice:
I am, you are, we are Australian"

To me this song is about equality and a sense of belonging and sitting there watching my gorgeous Violet sit amongst her mainstream classmates with all her additional needs sing along to this song it moved me for those very reasons.

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Why are kids so cruel?

2010-12-03T19:35:00.009+11:00

Feels I am posting too many posts like this.

Emily came home from school this afternoon and informed me that the boys in her her class (Year 6 boys = 12 year olds) had been talking about Violet today. She said they were saying she looked like a...wait for it....an alien :(

I am...as you would guess...devastated. I know some you may think these are only kids saying these things and they are only words...but to me, it hurts me to my core.

This is the school Violet is to attend in February!

This just further makes me anxious about how Violet will cope in the future in school and life in general.

Of course I am not a mushroom in the dark, I do know bullying exists as Emily herself has been subjected to it since Kindy and Violet has been aswell just being a visitor to Emily's old school and now seems her new school already.

All I can say is, the boy is very lucky I didn't hear him say it!

Wheelchair Update

2010-11-29T14:19:00.006+11:00

Mogo wheelchairs just rang to advise me they will have Violet's wheelchair all finished by middle of next week!

They were also ringing to advise me they had received a cheque in the mail towards Violet's wheelchair for $750.00! This was generously donated by my friend Louise and her family in Adelaide. They own Burns Ceiling and Building Supplies, so all my Adelaide readers, please pay them a visit if you need anything whether it be for building, renovating, DIY etc.

I have also had very generous donations from the following people and thank you all:

Melissa Young

Chantelle Jary

Jeff McDonald

Rachael Taylor

Jen Prior

Thank you all for your support for Violet's wheelchair fundraiser. It is greatly appreciated and we have been overwhelmed by everyones generosity.

An Open Letter to All Professionals

2010-11-24T21:33:00.005+11:00

I friend of mine in Melbourne found this great post recently and decided to post it on her daughter's blog Ellie's Story the other day and I am so glad she did!

I decided to email the original writer Pia and ask for her permission before posting on my blog and she kindly gave me permission.

It is written by Pia from her blog The Crack and The Light

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Physical Disability Clinic

2010-11-23T21:17:00.004+11:00

This morning Violet had her Physical Disability Clinic appointment.

Was kind of wondering whether to bother going as she is booked in for her surgery in February anyway, her Botox injections have been put off until after this and we are now seen alot in the ROC Clinic anyway.

Figured it had been 17 months since our last clinic visit so we better go anyway.

On examining Violet's hemi leg/foot after taking off her AFO, her Doctor still wasn't happy with her pressure sores the AFO is leaving, so she called down to Violet's Orthotist to fix it as soon as we finished with her...so already a great reason for keeping this appointment today.

She did want to stress the fact she wants me to manage Violet's pain until surgery (Violet hates meds, even when in pain with massive headaches, joint pain etc she refuses to be medicated!) She still obviously has to have her seizure meds twice daily and of course these are a MUST HAVE, so she suggested maybe to mix the pain relief in with the seizure meds just to help relieve her. Sounds like a plan I think...

Swing

2010-11-22T19:05:00.009+11:00

You may remember a while back Violet was approved for some funding for an Epilepsy Monitor which was received and is fantastic! We also received funding at the same time for a new Disability Stroller that ended up being too dangerous and hence the path we have now taken ordering a wheelchair.

The organisation we received these funds through wanted us to have a good think about what else we could use the remaining funding for and we thought Violet would really benefit from.

One of the main things I could think of was a new swing. Her current swing is still the old Hills Toddler style one that she can only just still fit in with zero support and her legs were dragging on the ground!

So, I went on the search and I found a great one online through FAS Therapeutic equipment and of course they are mega expensive as everything is in "the land of disability" but the smile on her face today once it was put together and she got to have a go = priceless!

Health Action Plan Meeting

2010-11-18T19:39:00.007+11:00

This afternoon, I met with Violet's school Principal, Disability Itinerant Support Lady and School Counsellor as I had to go through and make a new Health Action Plan with the school even though Violet has one in place at her preschool already, the Dept of Education do things alot differently...and by differently I mean alot more detailed and thorough...lets just hope they stick to it when it comes down to it!

It was another long meeting, took 3 hours to go through Violet's medical conditions and write a detailed plan for each of them. Luckily I had already prepared them with the one I had typed up for Preschool, otherwise we would have been there longer.

They have also decided to introduce a card system there for Violet in case of a medical emergency which is great! (most schools have these kind of systems in place)

The staff will carry these cards with them, with an information card on Violet with her photo, conditions and emergency procedures in a bag at all times.

The information cards on Violet and her medical conditions will be displayed in all the rooms she frequents at the school, office and when she goes on school excursions they will obviously take one with her then...but of course I will be accompanying her to all excursions forever anyway!

Second School Orientation

2010-11-16T20:33:00.010+11:00

This morning Violet had her second school orientation.

We again met Violet's preschool aide there and also the Vision Itinerant Support Manager and off she went with them to the Kindy/Year 1 room. For the parents this week, the information was all about school readiness (maybe they should see if they are ready!: see end of post), P & C and school uniform.

When I went to get Violet, she seemed much more happy than last weeks orientation. She even said she enjoyed herself!

We have her Health Action Plan meeting at the school on Thursday.

Then I would like to make another appointment with the Principal to ~~stress~~ discuss the fact that they need to pull their finger out and have the new toilets finished in time for when Violet starts school come the 1st February (they are currently still under construction) As the principal has been saying all year "If they are not ready, she have to start later in the term". Now an added drama: even though we had our site inspection well in advance, the kindy room only has stairs as access at the moment and the ramp that needs to be built still hasn't been started, so this is another building modification that has to be completed before she starts. Principal again had the same response "If it is not ready, she have to start later in the term".

Well, I am not impressed nor will I be allowing this to happen. I will be sending Violet on the 1st February regardless to start school with the rest of her peers, as I feel it is her right as every other child to start school on time. The school will just have to cope.

A friend of mine who has spent the past 3 1/2 years organising everything for her daughter in advance to ensure a smooth transition to school, is also due to start school the same time as Violet but at a different school.

Sad to say, even though she has done the right thing being so prepared and getting the school prepared, she is now having to face very similar challenges and then some...and has even been told her daughter will not be able to start until term 2! That means she would lose an entire term of school...why should our kids have to miss out because of other peoples incompetencies!

We have prepared them = they know our children are coming to the school well in advance, We have helped organise funding = countless amounts appointments, paperwork submitted, including assessments, medical reports etc. So how can they not organise themselves?

What happened to inclusion of children with special needs in the mainstream setting...need I ask?

In other news:

We have placed order for Violet's wheelchair through Australian owned and made Mogo Wheelchairs. We still have a bit more fundraising to do, but hoping in the coming months to finish raising the remainder.

Eye Dilemmas

2010-11-12T19:24:00.011+11:00

Well where do I start this post? As I have mentioned Violet is overdue for an EUA (examination under anesthetic) and eye moulding for a new scleral shell. Since she first started having these from a baby it was as simple as calling the clinical nurse consultant in the eye clinic at the hospital and she would work out a date that Violet's Ocularist would be there and put her on the list, I would know the date that day I rang!

This year that has all changed, it has now become a waitlist system. So, she was due to have this all done in November from our waitlist letter.

Then we received another letter the other day stating she had been placed on the list for the 17th December, which is alot longer than we would have liked but we of course accepted as we really had no other alternative being this time of year and we want this to all be sorted before she starts school and before her upcoming orthopaedic surgery.

Then I just happen to call Violet's Ocularist to ask him if he can possibly squeeze an appointment in at his rooms before then to see if he can make an adjustment on Violet's scleral shell as she has not been able to wear it since June! and he says "I am seeing you on Thursday for the EUA and eye moulding" I said "This is news to me"

So I rang the eye clinic at the hospital and they did not have her on the list for Thursday! There is also a new-ish clinical nurse consultant in the eye clinic that is not at all good at organising these lists. The date she has Violet booked for on 17th December -Violet's Ocularist will not even be here in Sydney!

Oh...deep breaths...I had a big go at her anyway...made me feel good...as the hospital have known since the April she has had issues with her scleral shell and they have made her wait this long and now all this stuffing around with incompetent people running the lists! The nurse even told me I could use a different Ocularist! After 5 years of using the same guy, um I don't think so! Even if I did, I would still have to go through the referral process etc and that all takes time anyway!

So, I rang her Ocularist back at the start of this week and explained the situation to him and asked if he could fit us in before and thankfully he could yesterday. So after preschool we had the lovely drive of a 4.30pm appointment in Parramatta, but so worth it...as he did an adjustment on her shell and she is able to wear it again until her EUA and moulding is re-booked on a date when he is actually able to be there and yes it will sadly have to now be in the new year.

We will have to build up the hours each day for her to be able to tolerate the shell again as it has been so long inbetween wearing it now. He has also had to take alot of it off to help fix the scratching it was causing to her eye...so not as big as it was now which is frustrating as we feel we have gone backwards after all these years.

School Orientation

2010-11-09T12:51:00.011+11:00

Phew...survived first school orientation!

Arrived at the school with Dave, Emily and Violet and met with Violet's preschool aide who as you know has been funded through the Kids on the Move program to help with the transition to school.

She took some photos of Violet with us and some on her own as she is making a book for Violet about school that we can read to her to hopefully prepare her more for the whole school experience.

I know I have mentioned ages ago about how great Emily is for Violet as her big sister, and I could not imagine a better sibling for her to have in her life as I have blogged about here in 2008. Well, today with Em by her side at school sitting on the seats at morning assembly cuddling each other and even though feeling insecure about her new environment, felt that little bit better knowing her big sister was there with her...love you Em and love the little lady you are today, even if your other 10 year old ways do shine thru on occasions as all kids do.

She went into the Kindy/Year 1 room with her preschool aide and the other Kindy students for next year while the parents went into the library to hear all about the school and then had a tour of the school.

On the way out of Orientation today I asked Violet if she enjoyed herself and she said "no".

Next orientation 16th November.

Violet's Journey with Hydrocephalus & Microphthalmia

More Genetic Research

Neurosurgeon Appointment

6 Year Shunt Anniversary

2011

Genetics Appointment

Tantrum City

Orthopaedic Surgeon Appointment

Botox Clinic

Side Effects

Neurologist Appointment

Tooth Fairy

Thank you Better Start Funding

Opthamologist Appointment

Update

One of my worst fears

Physio Update

Orthopaedic Surgeon Appointment

Short lived

Here we go

Overcorrection?

She says

Orthopaedic Surgery

Neurologist Appointment

My 2 Fave Girls

A nice surprise

Spoke too soon

Orthopaedic Surgeon Appointment

Violet turns 6

A Break

Take a look at this

Headaches

Ocularist Appointment

Paediatrician Appointment

Abdominal MRI Results

Update

Abdominal MRI

Update

Update

Another Setback

Besties

Update

Friends Fundraising

Update

Neurologist Appointment

Update

Update

Budding Artist Perhaps

Update

Update and Dental Appointment

Tired of talking feet

Update

Child Development Unit

Blocked VAC

VAC Dressing

Update

Update

Update

Frustration City

Update

Are you for real?

More Post Surgery hiccups

Update and Incompetant Aide...Part 2

Pressure Sore Review

Another setback

Orthopaedic Surgeon Appointment

Incompetant Aide

Thank you painkillers!

Split Cast

Surgery

Funding Review

Neurologist Appointment

Getting so close

School may just redeem itself

School Saga...part 2

And the butting of heads begins...

First day of Primary School!

A presentation all about Violet

The good news and the bad news

First trip to ER for 2011