13 January 2010

Happy New Year Everybody.

It has now been a very busy four months since the treatment. We were told to expect to see results between 3 and 6 months and have noticed some changes we'd like to tell you about.

Firstly upon Alex's return to school in term four the first reports that came back from her teachers was that she was a lot more vocal, to the point where she was told off for making too much noise and distracting the other children. Distract away I say.

Next people noticed she was holding her upper body better and paying more attention to what was happening around her making eye contact easier and holding it for longer.

It has been easier for me to wait until independent people have commented on her progress, that way I know it's not just wishful thinking on my part. One improvement I have noticed that is indisputable is with her eating. She always liked Twisties and would suck on them until they were soggy then push them out of her mouth, now she chews them up and swallows them down with out wasting a crumb.

So here's to continuous improvement, we'll keep you posted.

Helen

26 September 2009

It's hard to believe we've been home for only two and half weeks, it seems like the trip was so long ago.

In fact we have to keep reminding ourselves that we shouldn't be expecting too many results yet.

Alex is doing really well, we've kept her home from school since our return to lessen the risk of her catching any bugs, but she will be back at the start of next term.

It's hard to say if there are any changes yet, I'm waiting for a big, undeniable result before I get too excited. In saying that many of our friends and family say they are noticing small changes and believe she is holding her body and head up better.

I absolutely don't mind if I'm the last to see it as long as it happens, and be assured I'll let you know.

Helen

All done

A quick trip across the border today and we've got what we came for.

Alex did well although she would have been quite happy to sleep for hours after the surgery. I had to play all the cards on the deck to get her to wake up in recovery and she came round in the end.

She hasn't asked for McDonalds yet but it's still early days.

6 hours in the waiting room of a medical centre has never been so exhausting so we're all looking forward to an early night.

Helen

Hello from California

We've arrived safely. A marathon effort to get all the luggage, wheelchair and carseat on and off the plane but we did it. I must say traveling with Alex is a dream. She loved every minute off it. The bumpier the takeoff and turbulance the more fun she had. She also organised us a quick path through customs which after 20+ hours off no sleep was much appreciated.

We meet Dr Steenblock yesterday afternoon. He was impressed Alex has a syndrome he hadn't heard of before (he sees a lot if syndromes) Also had a look at her brain MRI and said we should get some good results. I remain cautiously optimistic.

Drove down to San Diego where we will be based for the next few days, George, the driver from the clinic, will be picking us up in 3 hours to take us to Mexico for the treatment.

Will give you an update about that as soon as I can, hopefully about your lunch time.

Helen

Hello from Califoria

We've arrived safely. A marathon effort to get all the luggage, wheelchair and carseat on and off the plane but we did it. I must say traveling with Alex is a dream. She loved every minute off it. The bumpier the takeoff and turbulance the more fun she had. She also organised us a quick path through customs which after 20+ hours off no sleep was much appreciated.

We meet Dr Steenblock yesterday afternoon. He was impressed Alex has a syndrome he hadn't heard of before (he sees a lot if syndromes) Also had a look at her brain MRI and said we should get some good results. I remain cautiously optimistic.

Drove down to San Diego where we will be based for the next few days, George, the driver from the clinic, will be picking us up in 3 hours to take us to Mexico for the treatment.

Will give you an update about that as soon as I can, hopefully about your lunch time.

Helen

Thank You

I must say I am overwhelmed, what a great response at the Auction and I'm pleased to say we raised enough money to cover the travel and medical costs.

Now it's all hands on deck to make our flight. We leave for the USA this Sunday (30th August) morning and will have the treatment on Tuesday (Mexico Time).

I know you all wish us luck and I will keep you posted while we're away.

Thank you very much to all the fantastic people who donated products, purchased products made donations and are keeping us in their thoughts. Without this amazing support this treatment would have remained a dream.

August 12th 2009

Hi Everyone

Thanks for checking out our website. I hope you've found answers to any questions you had.

We are in full swing organising a great night for everyone on the 18th of August, the list of items being auctioned is amazing, the entertainment will be fantastic, you wont be disappointed.

Please contact us for tickets or you can purchase them directly from Smith and MacKenzie.

Remember to log on and check for updates on Alex's progress after the treatment.

Many thanks to all of you that have helped with our big event, brought tickets or made donations, we couldn't do it without your support.

Much love

Helen