Friday; I received a call from the Lions Club to advise,Isobel has been nominated for the ‘ Lions Children of  Courage Awards’,  presented October 2011. She will be invited up on stage to receive a medallion and a club member will speak about Isobel and her journey. A moving invitation.  Significant day and the invitation is extended to all those involved in her life.

Monday; Isobel meet with the eye surgeon for her regular check-up, where we were prepped for her next surgery. Initially Isobel’s eye rolled in causing her first surgery at just 8 months old, Monday I learnt her left eye is now rolling out. As it was not something I had brought attention to the whole appointment was a warning and preparation of what is to come. I was not prepared to hear the word surgery today as Wednesday’s appointment with the hip surgeon was the one I was building my anxiety for.

Wednesday; the day I have reserved my energy for. We meet with an exciting new Speech therapist, who provides a wealth of information and guidance. Then after Izzy’s afternoon nap it was off to the RBH for the that long awaited hip surgeons appointment.

Its amazing how fast the year has moved. The goals we set have yet to be reached, although you suddenly realise how quickly she has grown. My little Isobel is not so little anymore.

Izzy has made some extraordinary improvements this year, however, the year has been so eventful with surrounding circumstances, you forget how far we have come.

Our goal this year for Isobel was improvement in her speech,  as I was confident with the physiotherapy side of things. Unfortunately the government provide a limited service here, so to date Isobel has only received two hands on physio sessions through our government provider and maybe 3 speech pathologist sessions.

Although Isobel started the year with only 15 words, thanks to Deb our respite provider and  Meleetia,  her afternoon student teacher Izzy has reached a massive 50 – 70 words. Unfortunately Isobel is about to lose her afternoon guidance which has really helped her and me (Mum). Meleetia will be sorely missed. We are also losing our main support network with her, Her mum ‘Tanya’. They are moving away for the reason of reaching their own goals, and I wish them all the best with their dreams and endeavours. Please know you are irreplaceable and you have supported us in a way no other ever has or would. You have made the difference not only to Isobel but to our family and I hope you remain in our lives forever.

My daughter did some amazing walking in her walker today for around an hour and a half, helped me hang out washing, walked down to collect the mail from the mail box, walked up the drive way to wave goodbye to Daddy, then back down and around again. As awkard as it seems, she is happy and proud of herself wearing a smile not to be judged.

Out of nowhere it hit me, Isobel is almost 4yrs old and this is her life.

I love you Isobel.

Isobel has been approved for her Hart walker, although it has taken 18 months of persisting, the paperwork is in motion. Isobel will still have to wait up to six months for the process to be finalised. It is disheartening to know this time spent without it delays her development, but all in all, Isobel will be on her feet at last.

Isobel’s has been remeasured for her wheelchair with a more suitable outcome; again it may be 10 to 11 months from the initial consult before she is sitting in it, however it is a more appropriate long-term result.

Finally, since further correspondence with x-cell centre in Germany they have agreed to their original offer and confirmed Isobel’s appointment for 18th July 2011. Now the pressure is on to ensure Isobel gets back there on time.

dear  madame

Sorry to say, but I am not happy with the underlying tone of your email. Your sentence `I know that it is not through` is very upsetting me. Issam is a most honoust and respectful person. Of course we tell  everybody about our current treatment and to be honoust we are even more satisfied with iv mannitol as with lumbar. It is not in our hands that we had to change to another but even safer and at least similar effective treatment, this was just force majeur. It goes without saying that if you have no result you can come back for second treatment with lumbar puncture just to compensate you, without admitting any errors from our site. If you have positive results why should i offer you to come back at no costs? Do you consider it fair that if you got a safe and effective treatment to come back without charges for a second treatment? Moreover, Why should you come back for iv mannitol if you dont like it anyway? 
 
Pls consider that we are also not a governmental institute and we have to work very hard to pay my people and to pay all the bills, just as you and everybody else. We have very reasonable prices, in particular when you compare with the enormous amount of regulations to comply with and if you see the prices in countries nearer to you. My present position is that we cannot confirm for August 1st since this is the busiest period of the year.
I hope this email makes our position clear
Kindest regards
Dr C.Kleinbloesem

Fundraisers this year!
March - Brisbane
May - Brisbane
October - Sydney
Perth to be confirmed

Isobel crawled today for the first time and not just a little way, it was actually quite a distance for Isobel. Another milestone met.

Breaking news.  After eight long months, Isobel finally received her wheelchair.  We also collected an abductor bar to keep Isobel’s hips apart while she sleeps.
Isobel said the words, please, Jack and bag.
That’s what I call a good day…

When everything seems to be doing ok, it feels like another kick in the guts. Isobel had a couple of hospital appointments over the last two days, one being with her hip surgeon, where we learn't hip surgery is inevitable. Somewhat sooner than expected. He is reluctant to remove her pins as the tightness in her muscles is continuing to pull at her hips. He has suggested more therapy with the hope of holding surgery off. Ideally the soonest he expected if ever to do it again would have been when Isobel was eight years old, it is now seeming she will be lucky if she makes it to five.
This to me was just shattering. Isobel is only starting to get back on her feet from the last one, which took place November 2009. I don’t actually believe she has fully recovered. Although her pain seems to have gone, she is still not weight bearing as she did. I just see this as yet another punishing set back. I truly believed things would just start getting better. It seems we still have some road ahead.

In the last two weeks, Isobel has shown some truly extraordinary improvements:-

• Pulling herself up onto her knee's in a crawling position, today even crawling backward for the first time.
• Once on her knee's is pushing back to sit on her feet, pulling her body upright showing improved balance once more.
• The pool obviously provides buoyancy, however Isobel has started side stepping independently with very little of my direction in the pool.
• Pulling up to stand in the pool.
• Izzy is progressively getting closer to pushing herself up into a sitting position.
• Although Isobel cannot get herself into sitting yet, when propped can sit with her legs crossed for at least 20 minutes. This position was recommended to reduce leg spasms and improve upper body strength. We have only been adamant with this exercise over the last two weeks and have seen mass improvements.
• Lastly, sounds are starting to sound more like words.

Next Event Family Day held 20th March 2011
                   Get your wheels on
             See Events page for details!

This morning we arrived at Isobel Post-Botox appointment, as I would any other, to be confronted with a few unexpected announcements.

Generally a common question I ask at Isobel’s appointments is ‘Will Isobel walk’, today without even asking the Doctor, stated gracefully, Isobel will find it easier to use a wheelchair. In other words Isobel will not walk, however it would be easier for her to be able to reach and manoeuvre herself in and out of her chair, so our efforts and hard work will not go to waste as Isobel will appreciate it in the future.

The Doctor was then so kind to introduce me to the ‘Intrathecal Baclofen Therapy’. This involves a foreign computerised object to be inserted into Isobel’s body to administer ongoing doses of Baclofen through her spinal fluid. Isobel currently takes baclofen in a tablet form; however this procedure would be more effective in relaxing her muscles. This procedure has only been in Australia since 2005 and administered to 16 people in Royal Brisbane Hospital. This procedure would put Isobel in a position of contracting infections, as is quite common for the body to reject foreign objects in the body.

All this came as a shock, although you consider it may happen, it can be truly hard to believe. The thoughts that pass through the mind are disheartening, but we will not give up. Our little girl has determination.

Floods here in Queensland have just been devastating! Extremely apprehensive and confused to how to go about raising funds for Isobel to get back to Germany amongst this disaster.  

Today Isobel continued on her 15 minute trek and to top it off, we have rigged up a bike to sit on the treadmill for those times like the past few weeks where we haven't been able to get outside for her ride. Now to get her talking. In the last two weeks, Mummy has printed and laminated word cards and stuck them around the house. It has been working for her younger brother 17month old brother Jack. So fingers crossed.

Izzy hit the 15 Minute mark on the treadmill today. All this exercise and Isobel's thigh's are looking bigger than ever before. If she would only connect her mind with her body and walk.

So tonight, had dinner, ready to unwind and I hear this Mum Mum Mum.... coming from the gym room, and Izzy's hitting her treadmill, I say 'not now honey, it's nearly time for bed'. I leave the room. 3 minutes later Mum Mum Mum screaming from the Gym room, now Izzy's up on the treadmill trying to get into position.
How could I say No? What do you know we are into a full blown gym sesh at 7:30pm. Well I guess the positive is Mum will get fit quick.

Isobel received her vibrator plate last Thursday. This is one piece of gym equipment Izzy took to straight away, and actually requests to use it more. Unfortunately she is only able to use it for 5 minutes at a time, however she has been on it at least twice a day so far. It is suggested this machine will increase her muscles by 50% and increase the ability of balance. We were introduced to this at intense therapy in 'Unna', Germany.

I have noticed Isobel's weight baring has improved, even today continuing to take her own steps on the treadmill as I got up to turn it off. This is small steps, but Wow, what a moment.

Today we learnt Isobel would not be getting her walker. As logical the explanation it broke my heart to realise Isobel was just not ready. It’s hard not to blame myself for not putting more time into it, there just doesn't seem enough hours in a day. As it is worth $12,000 it seemed we should even sample other options to ensure the right equipment is matched to Isobel’s needs. It still just hurts not to have Izzy in that upright position with the rest of us.

Wow Isobel hit the 12 minute mark on the treadmill today only stopping once to give mummy a break. Mummy's arms are starting to show just how much work is going into this.

So little Miss Iz achieved a 30 minute ride, 12 minute walk and a 30 minute swim. What a star!

Well, Daddy started on Isobel's Gym today. The wall have been removed and we are ready to start planning her new room. All very exciting!

Isobel hit the big ten minutes on the treadmill today, of course we are still walking her feet for her. Although it is quite the achievement for Izzy with no crying.

We have had the 'Hart Walker' on trial for two weeks. Oh the pressure to make the most of that.

Well services from our government services here in Queensland have been intermittent and honestly quiet useless, we seem to be left to own devices and have to be the one to mention what our child needs rather than our trained professionals being ahead of us and suggesting our next movements.  We are grateful to see a therapist once a week maybe every two.

So today Isobel started her day waking up for half an hour, came out for breakfast and before you know it we were into her daily regime. We started with a bike ride around the yard to loosen up the legs, moving onto the treadmill in our garage where her mind is connecting with her legs in a stepping motion. Isobel seems to watch her feet a lot when this is happening. If she is not watching her feet she is looking at me then back at her feet. Izzy has become more helpful with the treadmill, lifting her feet more so on her own, although put her in her new walker that we have on trial and she just won’t connect the two. Frustrating,  not just for her, but for me. The screaming is torturing. I must at times sound evil to my neighbours, but today to a guest. I do wonder sometimes what people think, but at the end of a three hour work out Isobel is the one who will be grateful in the end and the comments will always come and go… We finished off with a swim in the pool, where Isobel  is kicking her legs and splashing her arms more than before. During her swim routine I have her hold on to the wall of the pool while I kick her legs for her, we then swim where she uses her arms and legs, we repeat this over and over for about 40 minutes. She loves the water. Since being off the bottle Isobel’s appetite has increased, today eating two vegemite sandwiches, a muesli bar and a milo before having a nap. Obviously her work out gave her quite the appetite. Isobel’s workout this morning lasted three hours.

My husband is working harder than ever knowing we have to go back to Germany, and this has put enormous pressure us, more than ever. I just can’t think about how it’s going to happen again yet. My main priority is that he gets his sleep while this is all going on. As anyone in our situation would understand trying to keep babies quiet let alone when you’re doing something with them they don’t want to do is rather impossible.

On Tuesday after arriving home from Germany, we set up the treadmill at home with a supportive system to get Isobel’s walking motion to click in. We Ockie strapped a walker to the treadmill, erected the Jolly Jumper over it and I do the stepping motion with her legs. This has become part of Isobel daily routine after a bike ride to loosen her up.  Isobel walked six minutes today, with barely any screaming. I think that is totally impressive for our little might.

Isobel had her first session with her student teacher today. We have organised a young school girl to come in and spend time playing structured games with Isobel. It went well, and I even got a break.

Isobel, although can not put herself into sitting position, when place in a chair, on her trundle or on the steps is sitting stronger even allowing us to put her shoes/boots on whilst she is there. I have noticed she is not even depending on her feet for balance as much. Izzy is holding her cup and placing it on the table and her appetite has improved immensely since being off the bottle.

Isobel continues to use the sign for toilet as she did this morning before doing a number 1.

Isobel's legs seem to be crossing more than ever.

Had an assessment done for Isobel's Hart walker today, the therapist discussed the improvement of Isobel's flexibility of her hips. That was exciting! So hopefully all will go well at next weeks trial and will be bringing one home for Isobel to work in for two weeks. It could be some time before the funds are raised to get it though. Total cost $12,000. I just can't believe it.

Brought Isobel a standing frame home to trial today too. She looks so much better in it. Will get some new pics up soon.

Isobel's tantrums have been difficult to deal with.

Not sure if you have kept up with Isobel’s blog, but keep the story short. We trekked 27 hours to Dusseldorf to find out by another parent in the waiting room Isobel’s procedure had changed, from Lumbar Puncture to IV. It was then confirmed by the Doctor in our first consult. The time spent in Germany end up quite challenging feeling pressured to use a drug we knew nothing about. It was an extremely anxious time.

Since we have been home the x-cell’s website has publically announced the shut to the procedure was a government one due to the death of a child with severe cerebral palsy whom had undergone the Neuro-endoscopy procedure.

The week following Isobel’s procedure all Lumbar punctures recommenced.

After all the effort and emotion that went into the organisation of this trip, I wrote to the CEO requesting Isobel return to their centre and be treated the way we had intended. The result of that letter has Isobel and I returning to Germany. The trip is something I don’t even want to consider at the moment, however if we can raise the money for flights and accommodation for the two of us with hope of Isobel also attending more intense therapy, it will eliminate that remaining question.  

Isobel learn't the sign toilet this morning, she picked it up immediately, then to follow did a number 2 on the toilet for the first time. Isobel is now pushing me away, whilst on the loo, showing her independence by sitting there on her own.

Isobel had friends over for a play today, although she seemed very quiet.

In recent days Isobel has been rather chatty even mimicking our sounds. Not that her chatting sounds like anything in particular, but she has been verbal on a more constant basis.

Isobel seems to be successfully weaned off the bottle and the dummy. This will help with her speech allowing her tongue to move from the bottom of her mouth.

There has been a noticeable difference with Isobel's eyes, she appears to have more control and they don't seem to wonder so much.

Over the past few months, two young children with most severe forms of cerebral palsy suffered serious complications during their neuro-endoscopy procedures; one resulting in a very unfortunate death which everyone at the XCell-Center deeply regrets. However, one must realize that all medical procedures are associated with limitations and risks; especially in situations with severely disabled patients.

 For more information:- 

http://www.xcell-center.com/news/for-our-patients---official-response-to-recent-events.aspx

It would seem this is why Isobel's procedure was altered. The facts are only now stated on their website. It was devastating for us and a number of others who travelled to ‘Dusseldorf’ during that week as Lumbar Punctures recommenced the following week. We were still there however were not offered this opportunity. My family is extremely disappointed; as we were advised by x-cell Lumbar Puncture procedure had a higher success rate.  We trekked 27 hours to have Isobel undergo Lumbar Puncture procedure to have it changed on arrival to an IV. It is a long way to travel with a 15mth and a 3yr old to be dissatisfied so profoundly.  This situation had us questioning the x-cell centre’s professionalism and integrity.

I have heard of all the successes with other patience, knowing they had lumbar puncture and for Isobel to make improvements obviously would be extraordinary, however we will never know how much better she would have been if we just got what we went for and paid for.

Concerned today when I learned x-cell has removed the IV option from their website. What does that mean?

Isobel started her new physio regime at home today. We have fitted out the treadmill and have a more structured routine, including speech games.

The start of our journey home. On the return we decided to change our flights to stop over in Singapore. This I am grateful for as Isobel again is not her quiet self. The 27 Hour journey to Germany was just too long and tiring and demanding with two depending babies.

Isobel's bending her legs on her own accord is getting better,  today attempting to conquer steps at her intense therapy session. I must say Isobel has become noticeably demanding having a tantrum on a daily basis. I'm hoping it's because she is missing home and her own surroundings.

There is a noticeable difference in her eyes, somehow seeming more wide eyed than tired or absent.

The Centre at Unna believe if they had her in their therapy sessions for a month the would have her talking. I believe they could even have her crawling at least developing a better trunk and core strength. This particular therapy actually involves exercising and stimulating Isobel whilst she is asleep on top of everything else. I truly wish we had spent more time there. If only the x-cell centre were more fair and reasonable with their charge for treating Isobel with IV rather than Lumber Puncture that money could have been extremely beneficial in this regard.

I still cannot believe how much I learn't and how much more knowledge there is to gain.

A massive thanks to the Institue for Special Systemic Therapy for squeezing Isobel in at the last minute. A special thanks to Bettina and Sabine for your time and effort. These alternative therapy options are definitely something I will be looking into further.

If you would like further information regarding the clinic, or contact details email me at FriendsofIsobel@aapt.net.au

Isobel is still not able to put herself into a sitting position, however when we are helping her into this position, her posture has improved out of sight. Izzy does'nt seem to favour her left side so much any more.

There is a noticeable difference in the spasticity of Isobel's legs making it easier to sit her on our hip.

Isobel said Daddy for the first time ever today, it was said repeatedly.

Isobel turned around completely in her high chair at breakfast this morning when hearing people speak at a table behind her. This is the first time this has happened, but occurred on a number of occasions over breaky.

We were picked up from our hotel at 12pm today for Isobel’s Stem Cell Implantation. I was still apprehensive, and was not willing to go ahead until more questions were answered. My first question was why was Isobel’s treatment procedure changed from Lumbar Puncture to IV, and the answer directly from the Doctor was that it was less invasive. At no time did the Doctor, interpreter or staff tell us straight, that the government had brought their Lumbar Puncture and Neuro-endoscopic procedures to a halt due to investigations.

I was finding it difficult to deal with considering we took a 27 hour flight to be here, to find out during our first consult everything had changed. I would have preferred the clinic to have been upfront from the start. From my eye’s it all seemed a bit deceiving, in turn giving off the impression there was something to hide. Was that just the language barrier or just what we are used to here in Australia, yet to be determined?

The clinic appears very clean and comfortable. We were accommodated in a private room furnished with two rooms, one similar to a lounge room, flat screen tv and lounge, coffee facilities and cold drinks in the fridge. The other room more clinical with hospital bed, however a computer tucked away in the corner. Unfortunately one public could not access easily. But it looked good. As I said to Jason, what hospital have you seen with these facilities particularly with a personal computer in your room.

We learn't Isobel had 500 million stem cells with a 96.7% vitality, then we went ahead with the procedure; we travelled a long way not to.

Isobel was a trooper as always. She cried, but maintained a smile in between the visits by staff, as Isobel has never taken to hospital staff, she is very cautious to whom she trusts.

The procedure seemed pretty simple and Isobel remained calm. Daddy was brave, Jack was easy going in the background and Mummy, was stressed as usual, but spent the day laying with Isobel in her bed cuddling.

We took our baby girl back to our hotel and like any other day she settled as if nothing had really happened.

Tonight I wait anxiously to hear from my new friend, another mother taking her daughter through the same process. I feel lucky to have met such a person, as after such a big few months leading up to this day, and quite the emotional process, then to get to the day and sit down after it all and write me a very lengthy and detailed letter of how the day went.

I will include as much as I can. You know who you are, and you must know you are one in a million

Hi Dionne,

As you were aware, I was very stressed to the breaking point for me so I was totally geared up once we got to the clinic.

Before we saw any Doctors, we saw a family from “xxxxx”  with whom we have briefly conversed with on collection day. I opened the conversation with them on how he and his family were feeling about the implant with their child. Interestingly, his wife was also traveling with his child and lo and behold, she is a Doctor in the states. I asked him about his wife's feelings and thoughts on the IV procedure with the Mannitol. He told me that his wife was very comfortable with the Mannitol protocol and that without it; the results would not be as productive. So, of course, right away, I felt more at ease but still agitated with more questions.

Incidentally, they had been properly advised by one of the Doctors that they were unable to the LP due to the Government shutting down the procedure until the safety of the procedure is investigated. Perhaps, they were advised because she is a Doctor and there is this "code" between them. I felt at least, they were not hiding it as I have been feeling.

When we went into the ward area, which was where the recovery unit is, I had a lot of questions for the nurse on duty, which was also the same nurse that was in the operating room on collection day. She was great as was the male nurse.

We asked her about the safety of the procedure in assuring that the right stem cells were being implanted and how could they be sure given that another chart was on our child’s bed and she had no arm bracelet. She said that in the OR that day, they had me confirm verbally my child’s name and her birth date, which I recollect them cross-referencing with her chart. She promptly and courteously told me that they are very careful with that as the consequences to the patient getting the wrong cells could prove fatal. We double checked the cells when they came back in as they were in a syringe with a proper label and in a "bio-hazard" bag with her name label pre-printed on it.

The procedure was as follows:

1. They flushed the "butterfly" to clean out any blood that may have blocked the IV

2. They connected my child to the IV saline, which were 150 ml of saline and 50 ml of the Mannitol. This dripped in pretty slowly so as not to upset her as she was complaining and pointing to her arm so we assumed it was hurting her.

3. The Doctor came in and told us the amount of cells collected and the viability.

4. The Doctor then personally delivered the cells directly into the IV and then followed it up with another 250 ml of saline to push them through.

They had also given my child a little sedative to help relax her and keep her in the bed otherwise; she would have been running around.

At the end of the whole IV procedure, my child was in good spirits and to see her tonight, you wouldn't know any different. She is her chipper self and isn't really aware that this could possibly change the direction of her life....we hope and pray.

For the pricing issue, I did ask to see Dr. Kleinebloesm, who is the Director of the Clinic but he was away from the office today. I kind of found this out earlier as while we were waiting to go for the implant, my child was hungry so I took two sandwiches out of the cooler and she ate them both. When the receptionist came in she asked me if I had taken them from the cooler and when I said ÿes", she say öh no, those sandwiches are for the boss. My response was oh, well...he can order take-out with my money then. She kinda giggled. Later, when I went for a coffee, I asked her how her boss reacted and she said he wasn't in so it didn't turn out to be an issue.

Overall, even though we are unhappy and perplexed with the mixups and the lack of honest communication, we feel that the procedure seemed safe and in the end, that is the only reason that we felt comforted to go ahead.

I hope some of this helps and that you will feel OK with what you about to do that may change Isobel's life. I hope and pray that everything goes well for your family.

The day, however, was very long as we didn't get the implant started until 2 pm even though our appointment was at 12:30. We only got back to the hotel at 6pm. Isobel is able to eat and drink during the procedure so be sure to bring lots of food and snackies to keep everyone's tummy happy. You will also want to bring something to help entertain the little ones.

Big hugs to you and your family........

Isobel  met with her doctor, questions were asked however it was again a brief encounter with no revue of MRI’s or Isobel’s detailed medical past. We were also advised of a change to the procedure that Isobel was undergoing from Lumbar Puncture to IV infusion. We were more content with an IV process as previously it was not available however now it involved the drug Mannitol.  This in some way is relieving; being less invasive with minimal risk, but now involves more homework, as with the Lumbar puncture meant no foreign product would be added to the mix.

Through maintaining contact with another mother who has escorted her 5 yr. old daughter, IV is somewhat cheaper than Lumbar puncture procedure; however both of us mothers had been charged 9000 euro.

 No explanation was offered by the centre to why our children s procedure had been changed, again raising the question for more homework.

A little research reveals Lumbar puncture and Neuro-endoscopy procedure has been bought to a halt by the government due to illnesses that has occurred on least two occasions.

The receptionist was extremely demanding in getting my money today she had me using her computer and making an international call from her office. The procedure would not even be completed until 15^th October.

Isobel seemed to get through the day quite well. I however found myself in protect mode only taking on board what I could deal with at the time.  I noticed Isobel’s arm being bandaged however only learn't when we got home Isobel had her IV remaining in her arm underneath a bandage.  I couldn’t believe it. I was quite dumbfounded as in Australia this is not something I have come across with Isobel, with any procedures she has undertaken, although it can be quite normal in other countries. In Australia, Doctors and nurses will repeat themselves on a number of occasions confirming everything is clearly explained.   

During our stay so far the centre has never been time with our appointments.

I could colour coat this process, as it would make a lot of people feel better, but that would be unfair! I can’t say everyone has had the same experience, although I find it interesting a lot of excited parents stop blogging when their experience at the centre is over.

This is a challenging experience. Yet another I would prefer not to endure.

 Be sure to ask the questions, never fear the answers and you can never know enough.

There are plenty of different therapies out there, chose what’s right for you.

I am going to blog my experience in full.

As much as I would prefer to see it through rose coloured glasses as anyone who is about to go through this process, I truly believe it is important people see it for what it is.

I asked people who had been through the process for their support and knowledge during this procedure, and still to this day have trouble getting that information freely. Blogs by other parents stopped when they had left the centre for home. It has had me question myself time and time again. I believe when you are conquering a journey such as this with your child, you should know what’s ahead.

Achieving this in a country other than your own, without your comforts and support can be extremely difficult, all ventures should be aware of as much as possible.

12^th October, the initial day of consult, the office seemed unorganised. We were in the hospital for about 4 hours and spent no more than 10 minutes with the anesthesia consultant. The language barrier made it challenging even though most staff spoke English.

Their were clients arriving unaware the Nuero doctor they had dealt with for the past 4 to 6 months had resigned 4 weeks prior to their arrival. One particular family traveled from Italy to learn of this during their consult with the doctor. This client had his son about to endure a Neuro-endoscopy.

Another from Canada, was aware of the resignation, had initially planned on the Neuro-endoscopy, being advise they would now have their 5 yr old undergo Lumbar puncture, to today learn the procedure is now taking place via an IV infusion.

Charge for Lumbar puncture 9000 euro now being advertised on the website 7995 euro

Charger for IV infusion 5545 euro this option was not previously available.

The reason of raising money begins to come to light, it’s now real. Worked so hard to make it happen, it's now happening. Worry about the financials and now we are at the emotional end.

Isobel was at times apprehensive on the way over, as she does not take to people and change easy. There were times she would part with Molly having to endure the security checks and she was obviously not happy, however by the end of the trip she showed signs of tolerance.

Isobel shows just how brave she is, even without communicating. She is aware and intrigued by everything that is going on around her. Whether she likes it or not, she can’t go to sleep.

We start the process tomorrow. 12^th October is the big beginning for us.

Must say, would rather be at home with support and familiar surroundings. xox

AJ's Mechanical Solutuions Minchinbury, have kindly donated a Free Auto Service voucher to the value $143. Bidding closes 4pm 5th October 2010. Good Luck!

We have received confirmation Isobel will be met by the specialist in Dusseldorf, Germany 12^th October, to proceed with her treatment 13^th October keeping us abroad for up to 14 days. We are in the process of settling our travel arrangements in hope funds will be raised in time. Fingers crossed…

We have been in discussions with Germany this week, and although we are waiting for it in writing, Isobel is set to meet with Germany specialist in October. While it is exciting to have confirmation it is also an extremely anxious time.

Miss Isobel was fitted for her first wheelchair today. It has taken twelve months for us to move toward accepting it, and unfortunately it will be more long term than we had hoped, but whatever gives Isobel her independence. Lets just get her to Germany I say.

Isobel was yet again incredible brave, although her initial cautious reaction to the hospital remains the same, it was not nearly like past experiences. Daddy did let Isobel eat chalk on the day, Mummy was dobbed on for eating in the wrong area and Jack remained supportive and patient as always. It is hard however to see the other children reminding us of where Isobel is headed.

What a day! Details and photo's to come. Brisbane put on a beautiful day!

Isobel conquered the Gateway Bridge today, 3.5klm in all peddling away on her bike in preparation for the Brisbane Bridge to Bridge. Nice Work Isobel!

I have noticed since Isobel has been out venturing her smile is larger than ever.

This evening Isobel's day ended with relaxing Lavender bath and massage with words we have never heard Isobel say before Cat, Cow and Sheep. Great conclusion to a spectacular day.