tag:blogger.com,1999:blog-447392662850613354.post104277883841506834..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: Parents of ventilated kids risk own health due to sleep lossBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-447392662850613354.post-727529915045871742016-09-04T10:35:37.580-04:002016-09-04T10:35:37.580-04:00Haha I'm the same right now! LolHaha I'm the same right now! LolAnonymoushttps://www.blogger.com/profile/13338081027263117900noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-16339823129182632572016-09-04T10:35:23.469-04:002016-09-04T10:35:23.469-04:00Haha I'm the same right now! LolHaha I'm the same right now! LolAnonymoushttps://www.blogger.com/profile/13338081027263117900noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-32004383877526910682016-09-01T18:01:56.380-04:002016-09-01T18:01:56.380-04:00I had to giggle reading some of this. I MIGHT aver...I had to giggle reading some of this. I MIGHT average 3 uninterrupted hours of sleep a night if I'm lucky. I also have to say nurse or no nurse, if a parent hears an alarm, they're going to get up. It's part of caring for your child. Their lives become ours and our lives become theirs. I'm happy with that too. I wouldn't have it any other way. Seeing her big smile and seeing her belly laugh makes my world a better place. She's a blessing.Robinnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-83223267173666674732016-08-30T08:58:54.987-04:002016-08-30T08:58:54.987-04:00My son has been in and out of the hospital. He ha...My son has been in and out of the hospital. He has been on the vent and currently on oxygen. It is a joy to be able to wake up and see him breathing. I am more than happy to help him through rough times. He also has autism and a seizure disorder. I am his voice and I would not change a thing. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-35178807122856538562016-08-27T08:38:19.736-04:002016-08-27T08:38:19.736-04:00How funny that I see this article as I sit here at...How funny that I see this article as I sit here at 5am, unable to go back to sleep for over an hour after getting up to turn off a vent alarm. I do not sleep well at night at all, even if my son does. My ears are always open in case he needs something, and with multiple things that alarm at night, that means little sleep at all!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-72163499995465152582016-03-16T19:27:38.386-04:002016-03-16T19:27:38.386-04:00My son has cerebral palsy. He's not vented bu...My son has cerebral palsy. He's not vented but has seizure disorder as well and regular bouts of insomnia, which are common for kids who have neurological issues. There have been countless periods of times, up to months, where I average two hours of sleep per night...sometimes continuous and other times it's collective time. While he does't seem to be effected by it, I know my capacity as a human is greatly compromised. Sleep is so vital to our wellness, but what can you really do when your child needs you? Cynthiahttps://www.blogger.com/profile/01914825706815227681noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-60407384224365616042016-01-03T13:16:13.368-05:002016-01-03T13:16:13.368-05:00My Tilly isn't vented.. & I can relate.. S...My Tilly isn't vented.. & I can relate.. She has Down's syndrome, she's tracheostomy, oxygen, suction, neb, meds and tube fed dependant 24/7, she's blind, has suffered 99% brain damage due to a cardiac arrest she suffered at home during the night and so on and so on. I get between 3-4 hours sleep per night every night.. If Tillys unwell that means 0 hours sleep. I Wouldn't change her though! She's tought me so much about life & im so very blessed to be able to call the liccle diamond mine xxx<br /><br />Claire Donovan age 24<br />Manchester Anonymoushttps://www.blogger.com/profile/12708550717019430118noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-89690406823969607732015-06-23T09:33:55.271-04:002015-06-23T09:33:55.271-04:00Holland Bloorview does offer respite, in the form ...Holland Bloorview does offer respite, in the form of short admittance into hospital, allowing parents to take a break. However, availability is a factor, as we have reached capacity. So, what would parents need or require, for their children, to feel happy and safe at another facility?<br /><br />Parents and advocates can approach some non-profit organizations, but first we must ask ourselves, What do we need or want?<br /><br />Matt Kamaratakis<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-37526502332518561082015-06-19T10:06:27.084-04:002015-06-19T10:06:27.084-04:00This study confirms everything that I am experienc...This study confirms everything that I am experiencing and have been thinking about lately. I am completely sleep deprived. My daughter is not medically dependant on technology (yet) but for 17 years, I have always had to have an ear out for her, as she usually calls out during the night, falls out of bed, gets tangled up in sheets, or just wakes up and has a hard time getting back to sleep. This 17 years of sleep disturbance is really affecting my life. I just have a hard time concentrating, and have a lot of anxiety lately in which I have experienced to this degree before. I even thought I had a brain tumour. I went to the doctor and took sleeping pills for 2 weeks. It was amazing to feel the difference that a deep sleep can do to your quality of life. When I am rested it is like the world is full of sunshine, and when I don't it is like a dull grey day. Thank you for confirming my thoughts. If I can help in any way please let me know.Laura Meffennoreply@blogger.com