tag:blogger.com,1999:blog-876712548323501002.post6100245489745191990..comments2023-08-11T17:14:46.459+01:00Comments on Uisneach and 1p36: Standers, signs and happy strapsMiriam and Michaelhttp://www.blogger.com/profile/08890936592017451739noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-876712548323501002.post-52246250889818844692011-11-03T13:42:16.741+00:002011-11-03T13:42:16.741+00:00Hi Victor. We are wishing Giovanni the very best a...Hi Victor. We are wishing Giovanni the very best and hope he goes home healthy and happy really soon. If you haven't already found it there is a private group on facebook called 1p36 deletion syndrome awareness & support I think it has abut 200 parents from accross the world and its really great for asking questions and sharing advice and information. If you have any problems finding it let me know (we only found it ourselves very recently). Wishing you the very best and looking forward to hearing more about Giovanni in the months and years ahead. MiriamMiriam and Michaelhttps://www.blogger.com/profile/08890936592017451739noreply@blogger.comtag:blogger.com,1999:blog-876712548323501002.post-55433536327642470132011-11-03T02:00:43.163+00:002011-11-03T02:00:43.163+00:00I really appreciated getting to know a little abou...I really appreciated getting to know a little about Uisneach (a very handsome kid, by the way!) through your blog. My 6-month-old son, Giovanni, was diagnosed a about 2 months ago with 1p36. We live in Brazil and are slowly getting to know more about the syndrome and reaching out to the broader 1p36 community. I'm sitting at his bedside in the pediatric ICU right now, hoping he'll finally get to go back home in a few days.<br /><br />I expect my wife and I will also start a blog about our son soon.<br /><br />All the best, <br /><br />VictorGiovanni's parentshttps://www.blogger.com/profile/11898079264414419102noreply@blogger.comtag:blogger.com,1999:blog-876712548323501002.post-68663437684243116612011-06-04T11:45:54.932+01:002011-06-04T11:45:54.932+01:00Hi Heather - we've found this whole blogging c...Hi Heather - we've found this whole blogging community around 1p36 very useful as well. In Ireland there was little enough information about the condition so it was helpful to see what other parents were having to deal with. Our aim is to keep the blog as up to date as possible but if there are any queries you have around any issues that arise that you think we might be able to offer advice on please feel free to contact us. Wishing all the best to you and your family.Miriam and Michaelhttps://www.blogger.com/profile/08890936592017451739noreply@blogger.comtag:blogger.com,1999:blog-876712548323501002.post-12640370077836469012011-06-04T03:06:44.061+01:002011-06-04T03:06:44.061+01:00I found your blog and was very interested in it be...I found your blog and was very interested in it because my son is just about 18 months old too. He was just diagnosed a few weeks ago with 1p36 deletion syndrome. He hates his tummy too, and does not tolerate it well. We are looking at using a stander as well. I'm interested to follow your blog and see what you come up with. -Heather from Taylorsville, Utah, USAHeather Thoruphttps://www.blogger.com/profile/13907275684538162717noreply@blogger.com