I have a friend from HS who has SB. She is in a wheelchair, and has experienced some minor health issues, though is overall healthy. However- she lives on her own, or I should say- with her H who also has SB. They are a really sweet couple. They do a lot- they both work full time, and are VERY active in the community. They are more social than I am, lol.
Anyways, I was on bedrest for several weeks before I had my DD due to pre-e. I found Netflix was my best friend. If you need tv show recommendations, let me know
That's great about your friend!
And, yes, Netflix has been a lifesaver! I have watched several movies, the entire season of Orange is the New Black, and several documentaries. I've also been overdosing on HGTV, lol.
It's actually nice to have the TV to myself. I'm usually watching SpongeBob with my son or cooking shows/sports with my DH. Now I can watch whatever I want when they're not here. I think I'm going to start Downtown Abbey next since all my friends have told me it's amazing.
Thanks @jermys! There are some great facebook and online support groups that I have joined. It's great learning of others' experiences. It has helped me to realize that kiddos with SB and their families can still lead a good life even with all of the challenges that come with it. Plus, it helps me to know what I can expect - both best and worst case scenarios.
Do you know the severity of your friend's daughter's Spina Bifida? Is she mobile or in a wheelchair? We're hoping that our little one will be able to walk unassisted, but we're also at peace if that doesn't happen.
trixie12, she's mobile - she has a walker thingy and she gets around really well on her own. She has two older brothers and a younger sister, so she can't just sit around, you know? I'm pretty sure she's continent, which was HUGE. She has very little feeling below her waist, so it was really hard for her to know when she needed to go, but she is a seriously determined kid and was NOT going to Jr. High without being able to pee on her own. She's a cool kid
Thanks @jermys! There are some great facebook and online support groups that I have joined. It's great learning of others' experiences. It has helped me to realize that kiddos with SB and their families can still lead a good life even with all of the challenges that come with it. Plus, it helps me to know what I can expect - both best and worst case scenarios.
Do you know the severity of your friend's daughter's Spina Bifida? Is she mobile or in a wheelchair? We're hoping that our little one will be able to walk unassisted, but we're also at peace if that doesn't happen.
trixie12, she's mobile - she has a walker thingy and she gets around really well on her own. She has two older brothers and a younger sister, so she can't just sit around, you know? I'm pretty sure she's continent, which was HUGE. She has very little feeling below her waist, so it was really hard for her to know when she needed to go, but she is a seriously determined kid and was NOT going to Jr. High without being able to pee on her own. She's a cool kid
Glad to hear she's doing well! Most of what I've read about kids with SB is that they are very determined. I'm looking forward to our journey, but nervous too. I am the type to want to "know" everything, and I hate surprises. The unknown about everything is killing me, but I'm keeping everything in perspective and staying as positive as possible.
Post by lilafowler on Jan 14, 2014 20:00:03 GMT -5
Hello!!!! What a beautiful family. I'm sending good thoughts to your family-what a fabulous and inspiring story. I can't wait to hear more wonderful things as time goes by.
I am also impressed that you've written a coherent and fascinating intro-that doesn't happen a lot in these parts (TBH most posts here are inchorent and boring so...)!
Hello!!!! What a beautiful family. I'm sending good thoughts to your family-what a fabulous and inspiring story. I can't wait to hear more wonderful things as time goes by.
I am also impressed that you've written a coherent and fascinating intro-that doesn't happen a lot in these parts (TBH most posts here are inchorent and boring so...)!
Thanks! And don't worry, I'm sure my posts from here on out will be incoherent and boring.