Guest guest Posted January 10, 2011 Report Share Posted January 10, 2011 Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of cast). I was suppose to hear back from Shriner's after Dr. D talked to her neuro-surgeon, but with the holidays and whatnot, I think it fell between the cracks...again. So I called and talked to her care coordinator today. She's going to talk to Dr. D tomorrow and find out where it is in the loop of things. As I was talking, I was telling her about Grace using a TENS unit for her bladder issue and that we were working with the settings to see if we could have it help her urinate. Anyway, I have only used it once since Grace was casted because she couldn't handle it being on. It was the very first time she had ever had any reaction to it being on and wanted it taken off! She said it hurt! She had not cared about it being on and at that same setting before she was casted. I think it is very significant! I have always thought there was something "pinched" or something by her curves and that it lessened her sensations. And wha-la! I could be right! Gotta love mommy instincts that the good ole medical professions scoff at. Anyway, just wanted to share. The care coordinator is going to get to the bottom of it all and get back to me. They may be willing to do an exploratory surgery to see if they can see anything that an MRI can't tell that might be causing all of this. Keep advocating for our kiddo's! We're all they got! Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2011 Report Share Posted January 11, 2011 Hi Jane, I truly believe God gave us moms that instinct for a reason. And we just have to aware of those feelings. Have you heard anything today from the nurse? Keep us posted if you find anything out. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.html Or follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Mon, January 10, 2011 1:15:57 PMSubject: Grace... Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of cast). I was suppose to hear back from Shriner's after Dr. D talked to her neuro-surgeon, but with the holidays and whatnot, I think it fell between the cracks...again. So I called and talked to her care coordinator today. She's going to talk to Dr. D tomorrow and find out where it is in the loop of things. As I was talking, I was telling her about Grace using a TENS unit for her bladder issue and that we were working with the settings to see if we could have it help her urinate. Anyway, I have only used it once since Grace was casted because she couldn't handle it being on. It was the very first time she had ever had any reaction to it being on and wanted it taken off! She said it hurt! She had not cared about it being on and at that same setting before she was casted. I think it is very significant! I have always thought there was something "pinched" or something by her curves and that it lessened her sensations. And wha-la! I could be right! Gotta love mommy instincts that the good ole medical professions scoff at. Anyway, just wanted to share. The care coordinator is going to get to the bottom of it all and get back to me. They may be willing to do an exploratory surgery to see if they can see anything that an MRI can't tell that might be causing all of this. Keep advocating for our kiddo's! We're all they got! Jane Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (2) Recent Activity: New Members 2 New Photos 7 Visit Your Group Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 Thanks Tasha.The nurse just called a few minutes ago. They want me to schedule Grace to see the neuro-surgeon again. Trouble is, i can't "just" do that. I have to get a referral again and whatnot. My thing about it is what good is it going to do for the dr to see her again? He there is nothing visually different and an MRI isn't going to show anything different now than it did in Sept or the other 2 she's had in the past. I want the 2 doctor's to talk! He said he had a conversation, but hello? tell me what was said? Grrr. Anyway, I'm going to go email her pediatrician to see if I can get a referral going again. I hate days like this where I feel defeated. Jump ahead 2 steps and slide back 2. Grrrr. JaneFrom: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, January 11, 2011 1:57:55 PMSubject: Re: Grace... Hi Jane, I truly believe God gave us moms that instinct for a reason. And we just have to aware of those feelings. Have you heard anything today from the nurse? Keep us posted if you find anything out. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.html Or follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Mon, January 10, 2011 1:15:57 PMSubject: Grace... Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of cast). I was suppose to hear back from Shriner's after Dr. D talked to her neuro-surgeon, but with the holidays and whatnot, I think it fell between the cracks...again. So I called and talked to her care coordinator today. She's going to talk to Dr. D tomorrow and find out where it is in the loop of things. As I was talking, I was telling her about Grace using a TENS unit for her bladder issue and that we were working with the settings to see if we could have it help her urinate. Anyway, I have only used it once since Grace was casted because she couldn't handle it being on. It was the very first time she had ever had any reaction to it being on and wanted it taken off! She said it hurt! She had not cared about it being on and at that same setting before she was casted. I think it is very significant! I have always thought there was something "pinched" or something by her curves and that it lessened her sensations. And wha-la! I could be right! Gotta love mommy instincts that the good ole medical professions scoff at. Anyway, just wanted to share. The care coordinator is going to get to the bottom of it all and get back to me. They may be willing to do an exploratory surgery to see if they can see anything that an MRI can't tell that might be causing all of this. Keep advocating for our kiddo's! We're all they got! Jane Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (2) Recent Activity: New Members 2 New Photos 7 Visit Your Group Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Jane, Very interesting about the TENS unit and her reaction to it in cast. Lil darling...It doesnt surprise me at all that you got this figured out! We know our babies better than anyone and must always trust our intuition. This is just another great example. Thanks for sharing and please keep us posted on this. I'll pray that this doesnt continue to be an issue. HRH > Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of > cast). I > was suppose to hear back from Shriner's after Dr. D talked to her > neuro-surgeon, > but with the holidays and whatnot, I think it fell between the > cracks...again. > So I called and talked to her care coordinator today. She's going to talk > to > Dr. D tomorrow and find out where it is in the loop of things. > > As I was talking, I was telling her about Grace using a TENS unit for her > bladder issue and that we were working with the settings to see if we > could have > it help her urinate. Anyway, I have only used it once since Grace was > casted > because she couldn't handle it being on. It was the very first time she > had > ever had any reaction to it being on and wanted it taken off! She said it > hurt! She had not cared about it being on and at that same setting before > she > was casted. I think it is very significant! I have always thought there > was > something " pinched " or something by her curves and that it lessened her > sensations. And wha-la! I could be right! Gotta love mommy instincts > that the > good ole medical professions scoff at. > > Anyway, just wanted to share. The care coordinator is going to get to the > bottom of it all and get back to me. They may be willing to do an > exploratory > surgery to see if they can see anything that an MRI can't tell that might > be > causing all of this. > > Keep advocating for our kiddo's! We're all they got! > > Jane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Gosh, how frustrating Jane. I agree, why take repeated, recently taken tests when a lengthy conversation could get everyone on the same page. Good luck. HRH > Thanks Tasha. > > The nurse just called a few minutes ago. They want me to schedule Grace > to see > the neuro-surgeon again. Trouble is, i can't " just " do that. I have to > get a > referral again and whatnot. My thing about it is what good is it going to > do > for the dr to see her again? He there is nothing visually different and > an MRI > isn't going to show anything different now than it did in Sept or the > other 2 > she's had in the past. I want the 2 doctor's to talk! He said he had a > conversation, but hello? tell me what was said? Grrr. Anyway, I'm going > to go > email her pediatrician to see if I can get a referral going again. I hate > days > like this where I feel defeated. Jump ahead 2 steps and slide back 2. > Grrrr. > > Jane > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Tue, January 11, 2011 1:57:55 PM > Subject: Re: Grace... > > > Hi Jane, > I truly believe God gave us moms that instinct for a reason. And we just > have > to aware of those feelings. Have you heard anything today from the nurse? > Keep us posted if you find anything out. > > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After > being > treated in a series of 6 casts for 14 months he is now in a brace and has > been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... > http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > > > > > > > ________________________________ > From: Jane Bigler <janemhar@...> > infantile scoliosis treatment > Sent: Mon, January 10, 2011 1:15:57 PM > Subject: Grace... > > > Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of cast). > I > was suppose to hear back from Shriner's after Dr. D talked to her > neuro-surgeon, > but with the holidays and whatnot, I think it fell between the > cracks...again. > So I called and talked to her care coordinator today. She's going to talk > to > Dr. D tomorrow and find out where it is in the loop of things. > > As I was talking, I was telling her about Grace using a TENS unit for her > bladder issue and that we were working with the settings to see if we > could have > it help her urinate. Anyway, I have only used it once since Grace was > casted > because she couldn't handle it being on. It was the very first time she > had > ever had any reaction to it being on and wanted it taken off! She said it > hurt! She had not cared about it being on and at that same setting before > she > was casted. I think it is very significant! I have always thought there > was > something " pinched " or something by her curves and that it lessened her > sensations. And wha-la! I could be right! Gotta love mommy instincts > that the > good ole medical professions scoff at. > > Anyway, just wanted to share. The care coordinator is going to get to the > bottom of it all and get back to me. They may be willing to do an > exploratory > surgery to see if they can see anything that an MRI can't tell that might > be > causing all of this. > > Keep advocating for our kiddo's! We're all they got! > > Jane > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic > Messages in this topic (2) > > Recent Activity: > * New Members 2 > * New Photos 7 > Visit Your Group > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 It is frustrating. I will need to take MORE time off work to go sit in an office and have him decide what he can decide without us there! What really needs to happen is to get all 3 doctor's together in one room and hash out a plan and WE don't need to be there! lol But I doubt that will happen. Jane From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, January 13, 2011 12:02:35 PMSubject: Re: Grace... Gosh, how frustrating Jane. I agree, why take repeated, recently takentests when a lengthy conversation could get everyone on the same page.Good luck.HRH> Thanks Tasha.>> The nurse just called a few minutes ago. They want me to schedule Grace> to see> the neuro-surgeon again. Trouble is, i can't "just" do that. I have to> get a> referral again and whatnot. My thing about it is what good is it going to> do> for the dr to see her again? He there is nothing visually different and> an MRI> isn't going to show anything different now than it did in Sept or the> other 2> she's had in the past. I want the 2 doctor's to talk! He said he had a> conversation, but hello? tell me what was said? Grrr. Anyway, I'm going> to go> email her pediatrician to see if I can get a referral going again. I hate> days> like this where I feel defeated. Jump ahead 2 steps and slide back 2.> Grrrr.>> Jane>>>>> ________________________________> From: Tasha Fontenot <ryanswalk@...>> infantile scoliosis treatment > Sent: Tue, January 11, 2011 1:57:55 PM> Subject: Re: Grace...>>> Hi Jane,> I truly believe God gave us moms that instinct for a reason. And we just> have> to aware of those feelings. Have you heard anything today from the nurse?> Keep us posted if you find anything out.>> Tasha> Mommy of 5 year old twin boys- and > Fort Worth, Texas> is treated at Texas ish Rite Hospital in Dallas, Texas. After> being> treated in a series of 6 casts for 14 months he is now in a brace and has> been> since September 2007.>> EARLY Treatment does work if done properly.> You can read 's story at....> http://www.infantilescoliosis.org/stories.html> Or follow our family one day at a> time......http://thefontenotslife.blogspot.com/>>>>>>>>>> ________________________________> From: Jane Bigler <janemhar@...>> infantile scoliosis treatment > Sent: Mon, January 10, 2011 1:15:57 PM> Subject: Grace...>>> Well, she's been in her 5th cast for 3 weeks now (after 7 mo out of cast).> I> was suppose to hear back from Shriner's after Dr. D talked to her> neuro-surgeon,> but with the holidays and whatnot, I think it fell between the> cracks...again.> So I called and talked to her care coordinator today. She's going to talk> to> Dr. D tomorrow and find out where it is in the loop of things.>> As I was talking, I was telling her about Grace using a TENS unit for her> bladder issue and that we were working with the settings to see if we> could have> it help her urinate. Anyway, I have only used it once since Grace was> casted> because she couldn't handle it being on. It was the very first time she> had> ever had any reaction to it being on and wanted it taken off! She said it> hurt! She had not cared about it being on and at that same setting before> she> was casted. I think it is very significant! I have always thought there> was> something "pinched" or something by her curves and that it lessened her> sensations. And wha-la! I could be right! Gotta love mommy instincts> that the> good ole medical professions scoff at.>> Anyway, just wanted to share. The care coordinator is going to get to the> bottom of it all and get back to me. They may be willing to do an> exploratory> surgery to see if they can see anything that an MRI can't tell that might> be> causing all of this.>> Keep advocating for our kiddo's! We're all they got! >> Jane>>> Reply to sender | Reply to group | Reply via web post | Start a New Topic> Messages in this topic (2)>> Recent Activity:> * New Members 2> * New Photos 7> Visit Your Group>> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use> .>>>>>> Quote Link to comment Share on other sites More sharing options...
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