Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Thanks Kristal. That was a mouthful. Your concerns are exactly what I was afraid of. Crystal's rolling is so very important to her and her abilities. And at night she likes to actually lay on her stomach, at least before the BiPap, but I got that little sneak this morning on her tummy with the BiPap still on. She was awake and had her head up and resting on her elbows. Oooh free therapy! She is so easy. But I don't want for her to go a long time without being able to do this because she had lost the ability for a while and we really had to work together for a long time to get it back. Lactose bacillus-is that the Acidophilus? Well, I am going to check with the others more about the different options. Becky emailed me today saying that there is an option of not even having surgery done. They just pop it in without an incision. It was through IM and I closed it before I could save it, so I am going to have to email her again for the details, but I definitely will check into that route. No surgery is scheduled yet. Dr. has to find someone who can do it first and with the holidays it will take some time. I need to get more info on it too. I was really pleased with the detail you went into with the g-tube and your experience with . Do you mind if I post it in the book? Take care and thanks for all of your care and time. If anyone at anytime would like to be removed from the mass mailings I send out and/or Crystal's updates on her website, please, just let me know. God Bless All. Meet Crystal for yourself at: <A HREF= " http://www.our-sma-angels.com/crystal " >Crystal's Website</A> or visit <A HREF= " http://www.our-sma-angels.com " >Our SMA Angels</A> site and meet the rest of the children! Feel free to email me with any inquiries concerning Juice+ and/or NSA Filtration systems I use with Crystal for extra health benefits. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Hi and , I'm sick right now so can't write much but I waited way too long to get my g-tube. It has made life so much better without having to worry about eating/drinking enough all the time. I had it placed by the RIG procedure and it was much easier then the usual PEG procedure. Here's a link with some info. http://radiology.rsna.org/content/233/2/392.full On 11/14/11 1:49 AM, " " <laurablair620@...> wrote: > So I've decided it's time for me to get a gtube. I've just started talking to > my dr about putting things in motion. I'm 21 years old and a lower functioning > SMA Type II. I have been maintained extremely well with all non-invasive > aides (Bipap, coughassist, ippb, oral suctioning - dentist style). My doctors > have always commended me for how well I do. But I do have a fair amount of > trouble eating, and has gotten slightly worse over time. I used to weigh 65 > pounds. I'm down to 57. It's gotten harder and harder to fit in time to eat > with my active life. It is also really hard to eat when I'm sick. Also for the > past 8 or so years, I have to eat/drink 99% of everything laying flat on my > back. So when I am out and about for long periods of time, I either go without > eating the whole time or I have to find somewhere to lay down. This is all a > way of life for me, so to me, it's not awful, and I compensate veryyy well. > But I've realized, instead of resisting the tube (as I always felt gtubes were > for type Is and I'm not that weak! lol/I always wanted to be as " normal " as > possible/I'm a fighter, why give in?), it will actually enhance my life and > make it easier! It was a hard realization for me to come to, but hey, it will > keep me in good health - even better health than now! In the grand scheme of > SMA, a gtube is no big deal, but it's a HUGE step for me! I guess I'd rather > get in now while I'm " young and healthy " and before I end up really really > absolutely needing it! I am writing here to find out people's experiences with > the gtube procedure, the surgery itself, the process, the pain, etc. > Basically, what can I expect! > > Thanks in advance everybody! > :-) > > > > ------------------------------------ > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Thanks, . Hope you are better soon! xox  Lori ________________________________ From: Taras () <nicoleroberts@...> " " < > Sent: Monday, November 14, 2011 10:29 PM Subject: Re: gtube  Hi and , I'm sick right now so can't write much but I waited way too long to get my g-tube. It has made life so much better without having to worry about eating/drinking enough all the time. I had it placed by the RIG procedure and it was much easier then the usual PEG procedure. Here's a link with some info. http://radiology.rsna.org/content/233/2/392.full On 11/14/11 1:49 AM, " " <laurablair620@...> wrote: > So I've decided it's time for me to get a gtube. I've just started talking to > my dr about putting things in motion. I'm 21 years old and a lower functioning > SMA Type II. I have been maintained extremely well with all non-invasive > aides (Bipap, coughassist, ippb, oral suctioning - dentist style). My doctors > have always commended me for how well I do. But I do have a fair amount of > trouble eating, and has gotten slightly worse over time. I used to weigh 65 > pounds. I'm down to 57. It's gotten harder and harder to fit in time to eat > with my active life. It is also really hard to eat when I'm sick. Also for the > past 8 or so years, I have to eat/drink 99% of everything laying flat on my > back. So when I am out and about for long periods of time, I either go without > eating the whole time or I have to find somewhere to lay down. This is all a > way of life for me, so to me, it's not awful, and I compensate veryyy well. > But I've realized, instead of resisting the tube (as I always felt gtubes were > for type Is and I'm not that weak! lol/I always wanted to be as " normal " as > possible/I'm a fighter, why give in?), it will actually enhance my life and > make it easier! It was a hard realization for me to come to, but hey, it will > keep me in good health - even better health than now! In the grand scheme of > SMA, a gtube is no big deal, but it's a HUGE step for me! I guess I'd rather > get in now while I'm " young and healthy " and before I end up really really > absolutely needing it! I am writing here to find out people's experiences with > the gtube procedure, the surgery itself, the process, the pain, etc. > Basically, what can I expect! > > Thanks in advance everybody! > :-) > > > > ------------------------------------ > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 With the RIG procedure I had no anesthesia & it was fine. On 11/15/11 7:20 PM, " " <laurablair620@...> wrote: > I'd love to hear anybody's experience of getting a gtube without anesthesia. > No anesthesia would be a major plus for me! > > >> >>> So I've decided it's time for me to get a gtube. I've just started talking >>> to >>> my dr about putting things in motion. I'm 21 years old and a lower >>> functioning >>> SMA Type II. I have been maintained extremely well with all non-invasive >>> aides (Bipap, coughassist, ippb, oral suctioning - dentist style). My >>> doctors >>> have always commended me for how well I do. But I do have a fair amount of >>> trouble eating, and has gotten slightly worse over time. I used to weigh 65 >>> pounds. I'm down to 57. It's gotten harder and harder to fit in time to eat >>> with my active life. It is also really hard to eat when I'm sick. Also for >>> the >>> past 8 or so years, I have to eat/drink 99% of everything laying flat on my >>> back. So when I am out and about for long periods of time, I either go >>> without >>> eating the whole time or I have to find somewhere to lay down. This is all a >>> way of life for me, so to me, it's not awful, and I compensate veryyy well. >>> But I've realized, instead of resisting the tube (as I always felt gtubes >>> were >>> for type Is and I'm not that weak! lol/I always wanted to be as " normal " as >>> possible/I'm a fighter, why give in?), it will actually enhance my life and >>> make it easier! It was a hard realization for me to come to, but hey, it >>> will >>> keep me in good health - even better health than now! In the grand scheme of >>> SMA, a gtube is no big deal, but it's a HUGE step for me! I guess I'd rather >>> get in now while I'm " young and healthy " and before I end up really really >>> absolutely needing it! I am writing here to find out people's experiences >>> with >>> the gtube procedure, the surgery itself, the process, the pain, etc. >>> Basically, what can I expect! >>> >>> Thanks in advance everybody! >>> :-) >>> >>> >>> >>> ------------------------------------ >>> >>> A FEW RULES >>> >>> * The list members come from many backgrounds, ages and beliefs So all >>> members most be tolerant and respectful to all members. >>> >>> * Some adult language and topics (like sexual health, swearing..) may >>> occur occasionally in emails. Over use of inappropriate language will >>> not be allowed. If your under 16 ask your parents/gaurdian before you >>> join the list. >>> >>> * No SPAMMING or sending numerous emails unrelated to the topics of >>> spinal muscular atrophy, health, and the daily issues of the disabled. >>> >>> Post message: >>> Subscribe: -subscribe >>> Unsubscribe: -unsubscribe >>> Quote Link to comment Share on other sites More sharing options...
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