Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Since I just replied to a post, it's probably time for me to introduce myself as well. My name is English. I live in Utah and was originally a member of this group a looooong time ago. Probably 6 or so years ago. At that point I had three children, the youngest of whom had SMA type 1. My Taleah passed away two days before she turned four and I unsubbed from the list. Since then I gave birth to two beautiful boys who have an extremely rare asymptomatic form of SMA, adopted two children from Zambia and then gave birth to my youngest who has SMA type 1. So if you're counting that is 8 total children, 7 living with me. Tabitha was very weak early on, symptomatic by day 4, g-tube for swallowing difficulties at 5 weeks old. She is in one of the research trials and is on a couple different medications to decrease progression and weakness. She's done amazingly well since then. Rather than just prevent loss of strength, she has actually regained some of her swallow, arm strength, and vocal volume. In the scans they've done she has increased lean muscle mass and nerve function. She's a wonderful, beautiful, vibrant 14 month old little girl. You can check out my blog if you want far more info. about our little family than you ever asked for: www.monicathemighty.blogspot.com Tabs just had a hospital stay for bleeding in her stomach, that resolved, but left us with many unanswered questions. Glad to be here, I love it here. Even if I don't feel like I have a ton to contribute, I read and am reassured of the kind of child/adolescent/adult Tabitha might grow up to be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 It is good to see you back. I remember when Taleah passed but I did not hear about the beautiful experience with Dr S... made me tear up. Anyhow, I hope to see ya around more often now. From: <monicathemighty@...> Subject: Overdue Introduction " " < > Date: Monday, December 8, 2008, 7:46 PM Since I just replied to a post, it's probably time for me to introduce myself as well. My name is English. I live in Utah and was originally a member of this group a looooong time ago. Probably 6 or so years ago. At that point I had three children, the youngest of whom had SMA type 1. My Taleah passed away two days before she turned four and I unsubbed from the list. Since then I gave birth to two beautiful boys who have an extremely rare asymptomatic form of SMA, adopted two children from Zambia and then gave birth to my youngest who has SMA type 1. So if you're counting that is 8 total children, 7 living with me. Tabitha was very weak early on, symptomatic by day 4, g-tube for swallowing difficulties at 5 weeks old. She is in one of the research trials and is on a couple different medications to decrease progression and weakness. She's done amazingly well since then. Rather than just prevent loss of strength, she has actually regained some of her swallow, arm strength, and vocal volume. In the scans they've done she has increased lean muscle mass and nerve function. She's a wonderful, beautiful, vibrant 14 month old little girl. You can check out my blog if you want far more info. about our little family than you ever asked for: www.monicathemighty .blogspot. com Tabs just had a hospital stay for bleeding in her stomach, that resolved, but left us with many unanswered questions. Glad to be here, I love it here. Even if I don't feel like I have a ton to contribute, I read and am reassured of the kind of child/adolescent/ adult Tabitha might grow up to be. Quote Link to comment Share on other sites More sharing options...
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