*UPDATE*

Hi everyone.

Just wanted to update you all on how our trip to California went. Hopefully won’t bore you to tears, but thought some of you would be interested.
We were there for 2 months in the end getting Katerina treatment and therapy - only got back 2 weeks ago. Man was it hot! Away from the treatment, young Katerina had an absolute ball with all the open air swimming opportunities, and surprised mum and dad when after 3 years of clinging to us in the pool, she took off independently (with arm floats) and is now a confident little swimmer.

Have to say the trip was very successful and we’ve learnt so much more about her condition and the different ways to help improve her development over time. The impact of the medication will be a long term thing although we are already seeing very positive signs. The UC Davis Mind Institute in Sacramento, were also able to do more tests and break down all Katerina’s issues, making us more informed about the steps we need to take going forward.

As well as medication we were able to make appointments with some very knowledgeable speech and language therapists. Katerina’s language is delayed, and one of the reasons contributing to this is low muscle tone around her face brought on by the syndrome. The therapists there were able to introduce us to oral placement therapy. This involves different daily exercises using specialist equipment to help strengthen her mouth area to support speech. Again, we are already seeing progress in that area too. Won’t be long before she’s shouting ‘Eeeeeeagles!’ I’m sure.

As well as this, we have been advised by the doctor to start Katerina on an early intervention behavioural approach called ‘Early Start Denver Model’, which basically is a program of work children undertake to help develop their all round skills and help close the gap with their typically forming peers - mainly used for children with autism which Katerina has also had a diagnosis of. It’s play based, and when done properly the child doesn’t even know they’re learning. We have located a qualified therapist back here in the U.K, and she will be helping us by leading the teaching strategies we need to use for it to be as successful as it can be. Lots of hard work for mum and dad, but will be worth it.

As you can imagine, gaining all this intervention and advice wasn’t cheap, and if it wasn’t for the unbelievably generous donations from all of you, we would never have been in a position to locate the best therapists and advice while out there. We will genuinely never be able to thank you all enough for your amazing donations. It will make a huge positive difference to our daughter’s future and we will forever be indebted to your kindness. When she’s old enough and understands, I will tell her about you guys and that if she doesn’t support Palace she will have to go out and get a job to refund you all.

Just before we left the States, the local TV news channel of Sacramento got in touch with us through the institute. They heard about our story and felt it would make a good news item. So both me and Mrs Bubbs were (reluctantly) interviewed, and it finally appeared last weekend on TV over there. It was originally set for a couple of weeks prior, but had to be cut as John McCain died in the hour we were going to be on and we got cut for the breaking news.

Anyway, I think you might recognise the beautiful shirt I’m adorning. Had to do it! Nice of them to mention our club at the end too. Hopefully I may have converted a few Sacramentans to the cause.

Much love and heartfelt thanks to you all and of course…up the Palace!

[Link]

'Better stop dreaming of the quiet life 'cos it's the one we'll never know'

A bit too late to help for the trip, but donated anway.
Best of luck for Katerina's future.

Keep up the 'minutes' - love 'em

Thanks so much guys

'Better stop dreaming of the quiet life 'cos it's the one we'll never know'