Small changes

Hi all - well sorry to have been so quiet the last few days. We have been on the move and just never enough time to write and we have had very sketchy Internet access. Travelling with children - let alone special needs children is certainly and experience especially in a foreign country- we are all totally exhausted - we will all need a holiday from our holiday I think!
Today we landed in England, a slight change of plans, yesterday we were headed to Switzerland - things were going terribly wrong and Meg was not coping well so we decided we should head to an English speaking country for a bit and catch up with some of Jason's relatives.
So I know I am holding you all in suspense about these changes we have noticed with Meg - we really did not want to just spout on about changes that we so desperately wanted to see - anyway we are pretty confident now that we are definitely seeing some changes, - nothing major mind you but the spasticity in her hands has definitely decreased, one of the exercises we try to do with Meg daily is to hold her hand out flat with palm facing up - usually we would have to prise her fingers out and hold them quite firmly to be able to play the round and round the garden, well now constantly Meg can open and hold her own fingers out herself - this is quite a difference. In the all over scheme of things this is not a big change but we hope, as we have said all along that, only one small change may then grow as Meg develops new skills that she never would have been able to achieve, had she not had the stem cell therapy.

Meg is also making new sounds and her eye sight has improved. In all my wishes as a mother apart from having Meg eating and enjoying real food, the other wish was for her to look at my face, Meg has always had difficulty with this - I am not sure why but she has never stared at me intently, the other morning when I was feeding her breakfast and we were playing mum mum sound games, Meg just stared at me for about 30 seconds, into my eyes and at my mouth making the sounds and smiling and laughing. It was amazing to say the least, 30 seconds doesn't sound like much but believe me when your child has never really looked at you before 30 seconds was an eternity. She has not done it again since but I only hope that this will be the other big change in her, such a lovely way to interact and something I have missed.
Meg is also spending much more time on her stomach, something that she would have extreme difficulty in doing prior to the stem cells, as the tightness in her shoulders
would cause her to tip over, and it was uncomfortable for her so she would cry alot. Like I said she is spending more time happily on her stomach now and doing better with creeping and moving on her stomach also.
So - so far so good I guess, we would love to see more significant changes but It is difficult to continue with Meg's therapy when we are travelling - we are looking forward to getting home now and working with Meg more intently to see if we can turn some of these changes into real benefits for Meg and her future.

Thanks to all those who have emailed, sorry I just don't have time to reply individually but hopefully you will all get this news via the Blog.

love to all, we are back in OZ Easter Monday.

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Home from hospital

We were discharged from XCell centre yesterday afternoon, after seeing the Dr in the morning - who said it was fine to go, Meg began vomitting then crashed out for 3 hours. So it took us the entire day to leave the place. Anyway she seems fine, we have been given some Vomex - for nausia and she seems fine with just this and neurofen or Panadol. She is certainly sensitive around the head area, if you pick her up too quickly or she bangs her head against you when your carrying her she lets you know it is hurting.

She slept like an angel last night from 7pm till 7am with only a short wake up during the night. Woke up looking her old self with good colour and no black rings under her eyes like she has had lately, ate really well and sat up in her chair playing happily while I fussed around the kitchen. Jason and I had bought a decent bottle of champers to celebrate, each night after we have got Meg to bed we have been so tired - opening a good bottle seemed too much for both of us, so this morning we had a champagne breakfast - the german bacon - kaiserfleisch - is really good and they have fantastic breads etc so - we had a cook up and a glass of bubbley with a deep sigh to be so happy that the whole thing is done and dusted and Meg seems to have pulled through so well.

We took Meg shopping for some warm winter gear today - the shopping here is great - and we will be comming back to some colder weather.

When Meg wakes from her nap we are off to the Old quater for lunch in a traditional brewery - with Ingo our long lost friend and translator extrodinaire to say thanks for all his help.

Tom comes back to Germany tomorrow with Kerry - I think he is ready now - sounds like he has been having a great time though, I miss him terribly but it was one hell of a week and certainly would have been more difficult with a bored 10yo in tow so I am happy that George and Kerry were able to help us out and give him a great holiday.

I was thinking this morning that only 7 days ago I was off to Frankfurt airport with Tom - this really has been the longest and the shortest week I have ever experienced.

Well thats about it for now.

thanks for all your love and support

Kate Jason Meg & Tom

xx

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24 Hrs after surgery - so far so good

Well it just over 24 hrs since Megs neuroendoscopy, so far so good. No changes to be noticed so far - but it is early days yet. I think the only things we have noticed are in our own minds - wishfull thinking, we are just so surprised at how well she is doing. Really the only BAD bit was when she first woke from surgery, she really hit the roof for an hour or so - but we have seen this with Meg before after comming out from a general anasthetic, it is called emergence delerium so we had thought this may happen anyway and were prepared. After a short sleep she woke up smiling and happy and sat up on mum or dads lap and watched DVD's all afternoon - grazing on food for most of the day. We are lucky she has not been sick at all as yet and still has quite a good appetite.
We had a broken nights sleep last night - Meg slept soundly from 6pm till about 1am - then was awake ane ready to play til 4am - no number of lullabies would get her back to sleep. This again is pretty normal behaviour according to Meg's neurosurgeon Dr Tamascke. So all in all she is a textbook case, there was no bleeding on the brain during surgery and the Dr was extreemly pleased with how things went. She introduced over 8 million stem cells into Megs brain liquor spaces, This was also a really positive thing, Each person has an indervidual number of stem cells extracted the norm is between 2 - 5 million - but Meg had an unusually large number so this will all work to her favor.
So now is just a waiting game, we are here at the Xcell centre for another night or 2 depending on when the Dr's are happy for us to leave. And the rest is up to Meg - will it or won't it work?? Fingers crossed from our end it is a bit of a lottery but we have put our best in and thats is all we can do now.
We continue with Meg's therapy as best we can, we have been lucky with getting equipment over here and have a few things on loan, although it's been very hard to find the time.

So today e have our first spring weather day and as Meg has refused to have her afternoon sleep twice now we will take in some fresh air with a walk along the Rhine.

will keep you all updated

all the best
Kate




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Tune in to Channel 7 tomorrow night 18th March

Channe 7 news is doing another piece on meg from over here - should be aired tomorrow night 18th march - Tune in!
wish us luck we are leaving soon.

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Neuroendoscopic stem cell transplant it is!

Well we had Meg's MRI today, she was an angel right through.
What a little trooper, 2 General anasthetics in 2 days, and 1 more yet to come!
After the MRI we went back to the Xcell centre to see Dr Tamascke the Paediatric neurosurgeon who is looking after Meg. After much discussion she decreed that Meg's MRI looked typical of a child with her level of disability from a hypoxic (oxygen deprivation) event such as the one which happened during Meg's birth, she said that her brain looked symetrical with no obvious abnormalities in the right or left spheres, rather it showed an enlargement of the cerebral liquor spaces within the brain, a sign she thought that Meg was an ideal candidate for the Neuroendoscopic Stem Cell transplant proceedure as there was plenty of room to implant the stem cells right into the liquor spaces in Meg's brain. She was confident that by providing the stem cells right at the Basal Ganglia, (brain stem) that many of Meg's feeding swallowing and head control issues would see a vast improvement, and the belief is that with improvements in these base areas that as Meg grows and develops that she would then continue to develop in a more normal pattern. if you think of a new born baby whos first natural reaction is to feed, it learns very quickly to breath through it's nose as it feeds, learns to swallow without coughing etc etc, all things that Meg still struggles with, if we can improve these primal basic motor functions, we hope that it will inturn aid in the development of all her motor functions as a healthy (not brain damaged) child would.
Well we can only hope now, we have put our faith and hope with the Dr's at the XCell Centre and I am sure it is going to be a really hard week, We can expect Meg to be quite irritable and probably be off her feeds and have her normal bio rhythms upset. Wake & sleep cycles upset also.
Jason and I will both stay with her, we have a suite and for a little more we both can stay. We expect to be in the hospital for 3 - 4 nights.
So please everyone cross all your fingers and toes, pray to whom ever you believe in and send as much positive energy our way at 11am - 12pm German time tommorow, Meg needs all the help she can get to get through this and make it work.
We love and appreciate that so many people are following Meg's Blog, we are strong believers in positve thought and energy and hope that you will all give a little for Meg tomorrow.

Thanks again for all your love and support.

I am not sure when we will be able to update Meg's blog in the comming days but I will certainly let everyone know as soon as I can how it all went.

Ps, we met a family from Indonesia today at the MRI who had been told about Meg's blog some time ago and after reading it had then decided to come to Germany with their autistic daughter, I am happy that we might inspire, and hope we can help others in anyway we can.

Check out this latest NBC footage of Dominic & Harrison from the states - it is inspiring to say the least -
http://www.xcell-center.com/news/dominic-king-and-harrison-spiers-nbc.aspx

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Stem Cell extraction went well

To all those waiting in antisipation for news of how things went today, I am happy to report that all went extreemly well. Meg and Jason went into the theatre - He said she was a good little girl while they put the IV line in and only grizzled when they put the mask on her face.
The XCell centre is quite a facility the hospital it is based in is an old one but the floors that the XCell centre occupy have been completely refurbished and provide an extreemly modern and up to date facility.
We met another Aussie family in the waiting room with their 13yo CP son Michael who will undergo the lumbar puncture on wedesday, we all agreed that the Consultant we have been dealing with (the sales man who covers Australia) is quite useless and does not follow through on any details with the families.
Meg was out of theatre in about 20 mins and was aready waking up as they were wheeling her out, we went up to recovery with her and she was smiling as i was singing her favorite songs. Once fully awake she devoured nearly a while bottle of milk and within an hour we were being taken off to see the consultant about what exercises we should be doing with Meg to increase the stimulation in the areas of the brain that will aid the stem cells to find the right spots to repair.
Funnily enough it all centered around oral stimulation - it is stuff we are doing already, with just a few refinements we are on the right track which is heartening.
Home after the consult and Meg slept for 2 hours, we had a lovely walk and did some shopping, Megs back where the stem cell extraction took place is fine, you can hardly see the punctures and asolutely no bruising.
So tomorrow is the MRI and unfortunately another General anasthetic, we will see the Dr post this and discuss our final decission about which procedure to go with.

Stay tuned for the next episode

Kate



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Day one - Stem cell extraction

We have arisen early to feed Meg via the Peg while she sleeps as she cant have any breakfast today. We have to be at the XCell center by 9am for the bone marrow extraction.
All on tenter hooks here, its going to be a nerve racking week.
Will keep you all updated.
Tom happily entrenched in Greece - had a great trip over with him. he is becomeing quite the seasoned little traveller and had the hosties eatting out of his hands, comming off the plane with more games, & toys than I had ever seen.
He had a great beginging to his visit going off to Georges family for sunday lunch for some special festival day where they eat smoked cod (I think he had spagehetti)
Kerry & George took us out to a fantastic restaurant when we arrived and had all the famous Greek dishes - up on a mountainside in a funny quaint little restaurant, It was lovely.
A long trip back to Dusseldorf, It was a funny feeling taking off and leaving Tom in Greece - splitting up the family like this - I know he will have a much better time over there but it didnt make it any less difficult.

Ok well will keep you updated as i get a chance.

thanks for your love & Support

Kate n Co
xx


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Here we are In Dusseldorf

Hi everyone, well here we are in Dusseldorf.
We are settling in an getting used to the cold over here, even though it is spring it is bitterly cold.
The jetlag has also been difficult especially for the kids to adjust to, they are both still waking during the night.
We have been extreemly busy seeing Dr's and Physiotherapists, getting equipment for Meg to use while we are here. We have found a really lovely Physio - Claudia who has been an amazing help with getting a standing frame for meg to use while we are here, she is a really lovely lady and had offered to take Tom iceskating while we are here as she too has a 10yo boy, she will also try to arrange for Tom to atttend a day at a German School with her son so he can experience the difference.
We had an amazing stroke of luck with thanks to the News coverage of our departure. An old friend of mine Janine saw the Tv coverage and got intouch via email from meg's Blog. I was the bridesmaid at her wedding 25 years ago and we had lost contact for the last 15 years or so. Anyway the last time I was in Dusseldorf (20 years ago) was to visit them as they were living here at the time, it turns out that Janine & Ingo have split up and Ingo is still right here in Dusseldorf. We caught up and he said he would come to the appointment with us at the Xcell center to translate for us. Very luckily for us as Dr Tamascke - the paediatric neurosurgeon's English was quite poor and we had many indepth questions to ask.
Another amazing coincidence was that we bumped into Kerr Graham from RCH Melbourne (Meg's Orthopaedic surgeon) while in transit in singapore, he had just been to the Cerebral palsy conference in NZ and was on his way to London to give a lecture, anyway he was saying that the Stem cell trials going ahead in America were comming up with quite remarkable results. It seems Kismit is on our side with this trip.
So back to the Xcell center - our appointment went for some time as you could imagine but was extreemly fruitfull, we both are erring on the side of the endoscopic procedure now, although it was decided that to make a more informed decission that Meg needs a new MRI as the last one was done at only 5 days of age.
So the plan is at this stage to have the stem cells extracted on monday morning, have the MRI on Tuesday, following this see the Dr again and discuss the MRI findings. We will make the final decission on which procedure to go with following this appointment.
In the mean time I am taking Tom over to Greece today to stay with a girlfriend for the week as I think he has been pretty brilliant and such a big help with meg all week, but next week is going to be extreemly intense and I think he will have a great time with Kerry and her 2 boys Zac & Jacob who are around the same age.

will fill you in more next week

thanks for your interest and support

all our love
Kate Jason Tom & Meg
xx


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Thanks to Jennifer

Thanks so much to Jennifer from Scotland (cousin of Joan Harrison - Meg's carer) who got home from her visit to OZ and found $70 AU in her bag still - she sent it back Via Joan to donate to the MegAid trust.
Thanks Jennifer for you kindness.



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