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My Story

Welcome to Daniel's CaringBridge site. It has been created to keep friends and family updated about our son Daniel (now 18), who has Sanfilippo syndrome, otherwise known as Mucopolysaccharidosis III A, (a rare progressive lysosomal storage disease)

Journal

Sunday, May 31, 2009 4:05 PM, CDT


Hello everyone! Well we are back! What a wonderful experience it was! We set off from Bern on Friday, spent the night in an airport hotel (all in one room - quite novel - but worked well) and then had to get up at 4.30 to be at the airport at 5.30! So this was a very long day, especially as we had a meeting about the therapy not long after arriving. We were in a group of 6 families with 3 ladies looking after us. The families each had one special needs child and then other brothers and sisters which made for some wonderful interaction during the week. Therapy started early on Monday morning so this was not a holiday with lie ins. Daniel warmed up to it very quickly and was very gentle with the dolphin. He was soon able to stroke it on his own. The second day there was a spot of trouble with the filter in the pool so there was quite a bit of hanging around. We were taken for hypotherapy though (riding) and Daniel showed he was a pro at that. All the other kids had a chance to ride too. Then the Dolphins were finally later in the day. From Wednesday on we learnt that it was wise to relax a bit after the therapy and not rush off to the pool or beach straight away. By this time Anna was already quite red!! Daniel had Galileo physiotherapy after the dolphins which works on the feet up. This seemed to do his stability and muscle tone a lot of good, so I want to try and get this sort of therapy for him in Bern. As the week went on Daniel became more relaxed with the dolphins and seemed to know what he had to do and listened and worked with the trainers very well. Otherwise though he developed a virus which several of the kids got, with vomiting and diarhoea. He managed to still go on and laugh a lot but he had moments where he was quite irritable and obviously didn't eat that much. Despite this we noticed he was using more words and walking and confidence got much better. (He'd been a bit strange and very insecure when walking around objects or on steps lately over the last few months) We were very pleased to see a return of more confidence or it could be eye to foot coordination. We do hope this continues for a long time. As the week went on we started to find our way around Kemer and found right at the end, a lovely sandy beach, (most are pebbly). We didn't do many excursions as it was just too short but would do that if we go again. Peter and Sam also swam with the dolphins on Thursday and then Sam and Anna on Friday. Wonderful! I took a lot of film but my computer won't upload any film or photos right now so I have to get it put on a CD first. The photos you see on this site are from a CD the organiser of the therapy made for each child. I really enjoyed it and would love to do it again, but would obviously prefer the normal 2 week course which they do, as I could see that the kids get more and more out of it as time goes on. Also we only started to relax and feel organised after about 4 days!! I am so thankful though to Sternschnupper for doing this for us. It really was a dream fulfilled for Daniel and I know he will keep it in his memory. The journey back was at a more normal time and it was quite moving saying farewell to all the families who came from all over Switzerland, especially the very special children. Thanks for your good thoughts and prayers for this week. love to you all, Elizabeth


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