Update of Results from all our Fantastic Trips!

#5 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offered OS.

December 09: We returned to Europe and saw Anel and Tereza for Physio and see the Neurosurgeon and Eye Doctor.

This time it was just Mummy and Sierra. Shane and I realised we are now trained enough as physios that one of us can teach the other whatever we have learnt. I was very excited to have some time with Sierra on my own and she was a dream on the flight on the way over. We spent two days in London visiting friends, staying in our old haunt Camden watching DVDs and adjusting to the time zone and freezing temperatures outside.

Next stop was Prague. This time we stayed with the neurosurgeon in his family home. Dr Xivny and his wife Renata were wonderful hosts and we felt well cared for. It was great for Dr Xivny to see Sierra in a home environment it gave me a chance to point out some of the struggles and concerns I had while he was with us 24 hours a day. The depth of relationship we have built with them is amazing. Dr Xivny commented that Sierra's intellect had improved which was very exciting and his overall prognosis is that she will sit well, stand, take weight through her arms and legs, use her eyes to communicate very well and he also said he was not as pessimistic as me, he thinks Sierra will use her hands well and drive her own chair. Needless to say this was very exciting news!

Terza, the Vojta physio, was the next person who saw Sierra. She was very excited by Dr Xivny's comments. She was also very happy to see her roll for the first time. It was wonderful to see Tereza and get her physio input once again.

Dr Anna Zobanoba was next and as usual Tereza came to translate. Dr Anna commented that Sierra is a completely different child to the first time she saw her, "there is no comparison". Unfortunately Anna thinks the glasses will not be enough and she will probably have to operate on Sierra's eyes when she is 6 However, she continues to say we do not need to worry about Sierra's eyes, her eyes are now perfect and she sees as you and I see. The operation will only be to co-ordinate her "perfect" eyes. I told Anna about the Mytobii computer, to my surprise her face burst into a smile from ear to ear. She thinks this is the perfect thing for Sierra at this time. I'm surprised I hadn't thought to tell her about it before but was very happy to get this feedback.

Sierra and I went back to London to see Anel next. The first thing I did was put Sierra down on the mat so Anel could see her rolling, Sierra immediately rolled twice and Anel managed to catch the second one on her camera! For the rest of the week London was snowed under and it was too dangerous for us to visit the therapy centre so Anel came to where we were staying. The first day Anel visited, to my astonishment, she picked Sierra up, put her on her knee and asked her "did you enjoy your day today with Mummy?" Sierra immediately flicked her eyes at Anel to say yes, then Anel said "and you had banana for lunch, do you like banana?" Sierra flicked her eyes over to say yes again. It was an amazing moment, no-one had realised Sierra could keep up and participate in normal conversation. Anel went home that evening and told her husband "I had a whole conversation with Sierra today!!" This was the beginning of a very exciting week. Anel explained because Sierra could communicate in this way we could do pretending play. Children's toys in the house where we were saying came in handy, Sierra went shopping for Mummy, fed dolly some milk, helped dolly talk on her mobile phone and did drawing. On one of the days Anel exclaimed "oh my goodness she is so ready for that computer!"

The trip was a lot more valuable than I had expected, I'm always amazed at how much value I get from these people and I can't wait to go again in July!

Update about computer

I haven't been in touch for a while so I thought I better give everyone an update on where we are with the computer. We have exactly enough money raised ($22,600) and now we wait... The new cerebral palsy school Sierra's attending this year has asked us to consider another computer that uses eye gaze that's more compatible with their system. I am now unclear which computer to choose and it has been difficult to find a time when I am at home and the equipment people can arrange bringing both computers at the same time. I've had one appointment and initially it seems Sierra will be better with the computer the school recommends however, I REALLY like the mytobii computer so it will take a little bit more to convince me yet. I have another appointment scheduled in two weeks for Sierra to trial both computers for a second time, in the mean time I'm researching the alternative computer on the internet. Unfortunately these things take some time even after I've made a choice it may take weeks for the government to pay us their part of the funding. I'll keep you up to date with how we are getting on.

Sierra's new school (CPEC) is excellent and has a major focus on communication so all is not lost. We are learning the communication system that will be on the computer as a manual system. That means when we get the computer Sierra will mostly know how to use it.