Saturday, August 8, 2009

Update of Results from all our Fantastic Trips!

#2 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 offerred OS.

Trip 2 July 2008: we went over to Europe again. This time for Physiotherapy with Anel in the UK's Bobath Centre, to spend 3 days with Tereza in the Czech Republic for Hippotherapy and Vojta Physiotherapy, to see Dr. Zivny for Botox and Dr. Anna Zobonova for an eye appointment - both in Prague, then go to Cologne in Germany to meet Dr. Angy Etou to discuss the possible use of Stem Cells at the XCell-Centre.

We now refer to this trip as "The Vomit Trip". Sierra had very bad reflux anyway and when she was unwell this accentuated the vomiting. She wasn't really well enough to travel this time but it was then or in another 6 months. For a child like Sierra, every day counts between 0 - 3years of age. We couldn't wait. We just did the best we could to keep her as well as we could but she vomited everywhere we went!! It was awful. To this day I look back at how challenging this trip was but then I remember, if we hadn't gone, Sierra would not have vision!!

Benefits: Bobath: We started in the UK with Anel at The Bobath Centre where as planned she gave us a good 6 month physiotherapy home program.Tereza: When Sierra was on the the horse for the Hippotherpay it was determined that she didn't need Botox after all. It took Tereza a lot to convince me. I thought the Botox was one of the main reasons we had come to Europe - it's not offerred in the same way in Australia. I was afraid about leaving for 6 months and finding we had chosen incorrectly.
Tereza also gave us some corrections to the Vojta physiotherapy which was usual but what wasn't usual was Tereza's style. She had been influenced since our previous visit to do a more gentle style of Vojta which is commonly known to be tough and demanding of children, making them cry. This shift in style has been one of the main reasons we have been able to continue the Vojta as time goes on. Only 30% of parents contiue with Vojta therapy despite it's outstanding results, due mainly to the baby's crying.

The BIG SURPRISE of this trip was the eye appointment: Sierra's eyes had started to really improve from the use of the glasses so Dr. Zobonova suggested we move to using contact lenses. Shane and I were so shocked. "Contact lenses on a baby!!!" We trust this doctor immensly and the glasses were clearly working so we thought we'd try the contacts. Apparently the contact lenses work a LOT better than the glasses because the child can wear them all the time including throughout therapy when you need the child to be motivated the most.

Dr. Angy Etou: The XCell-Centre Stem Cell clinic was clean and modern. Angy was surprisingly direct about the lack of case studies for children like Sierra but thought we had about 60% chance of having some result and 40% of no result but NO CHANCE of going backwards. Shane's parents were with us and we all thought it worth giving a try so planned it for December 2008.

At the end of this trip we were all exhausted but we had made progress especially with Sierra's vision. Before glasses Sierra had next to no ability to focus. Vision is the most important thing for a child with a severe disability because unless they can see there is little motivation to move. Now we had proof that her vision was improving from using a +3 lens and we were leaving with a 6 month supply of +3 contact lenses.

We also had the commitment to come back in December to try Stem Cell...