Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Great news, Sandi! Do you mind me asking who this compassionate immuno who you loved is? Best wishes, mom to cVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hello, I just wanted to share that I started down the course of going to Chicago Shriners (we live in Indianapolis) for our daughter Sophia. They told me they did plaster casting of for scoliosis, but later found out there are two types (or more). The old Risser style and the " Mehta " early treatment plaster of Paris " jackets " . The specialist in Cincinnati was going to put her in the Risser style cast at 6 months but said it would not correct the rotation of the spine (RVAD) and could cause more lung problems since there was no cut outs. It was also more restrictive and could cause her more physical developmental delays (learning to crawl, walk,etc.). We then explored which hosptials did the " Mehta " style casting specifically and ended up traveling to Erie, PA and she goes back August 8th for her second cast. These are smaller and allow her more movement. It also has a large cutout that helps treat the rotation (hers was pretty bad) and limits additional lung problems. She is starting to crawl even! It is so hard to make these decisions and trade offs (I almost lost my job for being off so much for medical appts and travel with her for treatment) and my 3 year old started acting out. But at the end of the day, you just have to follow your heart and do the best you can for them. I truly believe that God is playing a role and the rest will work itself out. Keep your head up! Tina -------------- Original message -------------- I agree. Something doesn't sit right with me. Thank you all. I talked (and cried) it out with Dh and we're getting a second opinion. There's a doctor in Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I called and got his PERSONAL VOICEMAIL!!! UNHEARD of. I'm anxious to hear back from him. I read more today that showed even for those - gosh, I can't even type it without crying - even those who have growing rods and spinal fusion lose 20-30 years on their lifespan because of the decreased lung function. How do I make that decision for my son??? UUGH. Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 months. They say at least every 4 months. Also, I dont' understand at ALL why they're calling it congenital when there is no spinal defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's office made ZERO mention of that. I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms was under the age of 10. He's the best at what he does, but I just don't think THIS is what he does. Jack having a severe curve is so rare. I mean - a tiny tiny population in the country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I don't feel like our surgeon is that person. I'm terrified of making the wrong decision. This is our baby. He has to live with this his entire life. But, I think making an uninformed decision is the worst thing we can do. Even our primary care doc said on day one, " If this is lifelong, you'll probably want a second opinion. " I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about leaving the girls. I'm worried about the financial aspect (Please, God, let our other house sell!) and affording hotels and all the things that go with it. I'm worried about our car doing okay up there and back repeatedly. But, we owe it to to at least SEE if there's something else. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi Tina, I just wanted to let you know that Dr. Sturm was recently trained at an ETP held last year. So he is a " Mehta " trained doctor. informed me of that when I was looking for a doc in the Midwest. We were supposed to see Dr Sturm, but he has been out on medical leave for the past few months so we traveled to SLC. Thanks, > > Hello, > I just wanted to share that I started down the course of going to Chicago Shriners (we live in Indianapolis) for our daughter Sophia. They told me they did plaster casting of for scoliosis, but later found out there are two types (or more). The old Risser style and the " Mehta " early treatment plaster of Paris " jackets " . The specialist in Cincinnati was going to put her in the Risser style cast at 6 months but said it would not correct the rotation of the spine (RVAD) and could cause more lung problems since there was no cut outs. It was also more restrictive and could cause her more physical developmental delays (learning to crawl, walk,etc.). We then explored which hosptials did the " Mehta " style casting specifically and ended up traveling to Erie, PA and she goes back August 8th for her second cast. These are smaller and allow her more movement. It also has a large cutout that helps treat the rotation (hers was pretty bad) and limits additional lung problems. She is starting to > crawl even! It is so hard to make these decisions and trade offs (I almost lost my job for being off so much for medical appts and travel with her for treatment) and my 3 year old started acting out. But at the end of the day, you just have to follow your heart and do the best you can for them. I truly believe that God is playing a role and the rest will work itself out. > Keep your head up! > Tina > > -------------- Original message -------------- > > I agree. Something doesn't sit right with me. > Thank you all. > > I talked (and cried) it out with Dh and we're getting a second opinion. There's a doctor in > Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I > called and got his PERSONAL VOICEMAIL!!! UNHEARD of. > > I'm anxious to hear back from him. I read more today that showed even for those - gosh, I > can't even type it without crying - even those who have growing rods and spinal fusion > lose 20-30 years on their lifespan because of the decreased lung function. How do I > make that decision for my son??? UUGH. > > Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 > months. They say at least every 4 months. > > Also, I dont' understand at ALL why they're calling it congenital when there is no spinal > defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a > cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's > office made ZERO mention of that. > > I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms > was under the age of 10. He's the best at what he does, but I just don't think THIS is what > he does. Jack having a severe curve is so rare. I mean - a tiny tiny population in the > country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I > don't feel like our surgeon is that person. > > I'm terrified of making the wrong decision. This is our baby. He has to live with this his > entire life. But, I think making an uninformed decision is the worst thing we can do. Even > our primary care doc said on day one, " If this is lifelong, you'll probably want a second > opinion. " > > I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about > leaving the girls. I'm worried about the financial aspect (Please, God, let our other house > sell!) and affording hotels and all the things that go with it. I'm worried about our car > doing okay up there and back repeatedly. But, we owe it to to at least SEE if there's > something else. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi Tina, I just wanted to let you know that Dr. Sturm was recently trained at an ETP held last year. So he is a " Mehta " trained doctor. informed me of that when I was looking for a doc in the Midwest. We were supposed to see Dr Sturm, but he has been out on medical leave for the past few months so we traveled to SLC. Thanks, > > Hello, > I just wanted to share that I started down the course of going to Chicago Shriners (we live in Indianapolis) for our daughter Sophia. They told me they did plaster casting of for scoliosis, but later found out there are two types (or more). The old Risser style and the " Mehta " early treatment plaster of Paris " jackets " . The specialist in Cincinnati was going to put her in the Risser style cast at 6 months but said it would not correct the rotation of the spine (RVAD) and could cause more lung problems since there was no cut outs. It was also more restrictive and could cause her more physical developmental delays (learning to crawl, walk,etc.). We then explored which hosptials did the " Mehta " style casting specifically and ended up traveling to Erie, PA and she goes back August 8th for her second cast. These are smaller and allow her more movement. It also has a large cutout that helps treat the rotation (hers was pretty bad) and limits additional lung problems. She is starting to > crawl even! It is so hard to make these decisions and trade offs (I almost lost my job for being off so much for medical appts and travel with her for treatment) and my 3 year old started acting out. But at the end of the day, you just have to follow your heart and do the best you can for them. I truly believe that God is playing a role and the rest will work itself out. > Keep your head up! > Tina > > -------------- Original message -------------- > > I agree. Something doesn't sit right with me. > Thank you all. > > I talked (and cried) it out with Dh and we're getting a second opinion. There's a doctor in > Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I > called and got his PERSONAL VOICEMAIL!!! UNHEARD of. > > I'm anxious to hear back from him. I read more today that showed even for those - gosh, I > can't even type it without crying - even those who have growing rods and spinal fusion > lose 20-30 years on their lifespan because of the decreased lung function. How do I > make that decision for my son??? UUGH. > > Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 > months. They say at least every 4 months. > > Also, I dont' understand at ALL why they're calling it congenital when there is no spinal > defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a > cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's > office made ZERO mention of that. > > I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms > was under the age of 10. He's the best at what he does, but I just don't think THIS is what > he does. Jack having a severe curve is so rare. I mean - a tiny tiny population in the > country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I > don't feel like our surgeon is that person. > > I'm terrified of making the wrong decision. This is our baby. He has to live with this his > entire life. But, I think making an uninformed decision is the worst thing we can do. Even > our primary care doc said on day one, " If this is lifelong, you'll probably want a second > opinion. " > > I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about > leaving the girls. I'm worried about the financial aspect (Please, God, let our other house > sell!) and affording hotels and all the things that go with it. I'm worried about our car > doing okay up there and back repeatedly. But, we owe it to to at least SEE if there's > something else. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi, I mostly wanted to say GOOD LUCK in this quest. It is so hard to know what the " right " procedure is for our kids. With medical technology being more advanced, there are more and more choices to choose from, making it more and more confusing. However, KNOWING there are more choices than just fusion is great. <<...even those who have growing rods and spinal fusion lose 20-30 years on their lifespan because of the decreased lung function.>> There are more and more studies being done showing that early fusion is NOT beneficial for long term lung function. Fusion for kids who have large curves, especially thoracic curves, should be avoided at all costs. Fusion should be an absolute last resort. My Braydon was fused at 11 months old. His fusion is T5-L1. His current lung function is 47% at age 12yrs old. He also had VEPTR surgery at age 6yrs old. Since his VEPTR surgery, his lung function has remained stable - whew. My point is there is a point in this decision making process where you have to decide which is the lesser of the evils. The traditional growing rods have had a history of natural fusion because of their close proximity to the spine - the bones fuse together spontaneously because of the foreign material " irritating " it and causing excess growth. VEPTR rods are not placed along the spine and have not had the spontaneous growth problem. Braydon has had his VEPTRs for 6yrs and his spine is still stable, flexible (except for the fused area) and doing well. Weighing the many factors (including lung function) is very important, but can be overwhelming. Your best bet is to get more than one opinion from a PEDIATRIC orthoepdic surgeon who has treated many (more than 10) kids like . There are a handful of these docs in the USA and I would trust my child's life to most of them. Travel is difficult, but do-able. We had to go to Texas (from Utah) for Braydon's VEPTR surgery and first expansion surgery (we now stay local because his ortho is a VEPTR training surgeon now). Make sure you ask lots of questions. His curve is high enough that he needs someone to explain to you the long term " plan " and start treatment sooner than later. Trying least-invasive things first is always good. When Braydon had his VEPTR surgery, we knew that we had to try this first, because more fusion was not a good idea, but we would have gone there if the VEPTR failed. You have to do what's best for your child. Period. We can all share our experiences and advice, but ultimately its your decision (lucky parents! NOT) Good luck and please continue asking questions. That's how we learn and how we get the best care possible for our kids. My best, Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health./group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ oneSearch: Finally, mobile search that gives answers, not web links. http://mobile./mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi Sandi! Firstly, take a deep breath and say a prayer for God's peace. He will give you peace and wisdom! : ) Secondly, try not to worry too much before you actually talk to a casting doctor. They will, more than likely, want to see 's x- rays and get some other information from you before they recommend the next steps for you to take. If you haven't done so already, get a copy of 's x-rays from the radiologist that took them. I had to pay $15/sheet for 's but it was worth it. Then, take some pictures of 's back with no clothes or diaper on. Include the pictures, along with the x-rays and a brief " bio/fact sheet " about in an OVERNIGHT package to the casting doctor. Again, I believe this is worth the cost. Also, when the time comes, don't forget to contact Shriners about transportation. Our local Shriners (the nearest to us is Detroit) has offered to have their van or bus driver drive us to our appointments in Erie! This is all for free, and the drive is over 5 hours! They also include free lunch. And don't forget about Angel Flight. As far as taking your other kids or leaving them with someone. Do you belong to a church? I've seriously considered " farming out " my kids to different families (friends of ours, of course), so that the " burden " isn't all on one family. That sounds worse than I mean it to, but it could even give your other kids a chance to have some " fun time " seperate from their siblings! This could actually be a good and fun thing for them! Just a suggestion - I know that every situation is different. Also, have you talked to or emailed at ISOP? She is very knowledgable and caring. She will help point you in the right direction and give you much needed support and encouragement. You can contact her through the infantilescoliosis.org website. Lastly, try to relax. I know that is hard to do sometimes, but if you're doing all you can (research, contacting doctors, etc.), then there is nothing more you can do at this very moment. If you need to do some things, get those x-rays and pictures together. And then try to enjoy the summer with your kids...swim and have fun! Remember, you're not alone! ~ : ) Mommy to ~ ~ ~ AND (8/18/06) ~ diagnosed at 9m with 45o curve ~ " normal " MRI and ped. neurologist assessment ~ scheduled for 1st cast with Dr. on 8/22/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Thanks , That is great news! I thought the ETP that was scheduled in Chicago for this summer (but got cancelled and moved to NY) was to train them. Glad to know Dr. Sturm is there and already trained. Do you know if they have the same equipment as Erie (table, etc.)? Re: Update on Hi Tina, I just wanted to let you know that Dr. Sturm was recently trained at an ETP held last year. So he is a " Mehta " trained doctor. informed me of that when I was looking for a doc in the Midwest. We were supposed to see Dr Sturm, but he has been out on medical leave for the past few months so we traveled to SLC. Thanks, > > Hello, > I just wanted to share that I started down the course of going to Chicago Shriners (we live in Indianapolis) for our daughter Sophia. They told me they did plaster casting of for scoliosis, but later found out there are two types (or more). The old Risser style and the " Mehta " early treatment plaster of Paris " jackets " . The specialist in Cincinnati was going to put her in the Risser style cast at 6 months but said it would not correct the rotation of the spine (RVAD) and could cause more lung problems since there was no cut outs. It was also more restrictive and could cause her more physical developmental delays (learning to crawl, walk,etc.). We then explored which hosptials did the " Mehta " style casting specifically and ended up traveling to Erie, PA and she goes back August 8th for her second cast. These are smaller and allow her more movement. It also has a large cutout that helps treat the rotation (hers was pretty bad) and limits additional lung problems. She is starting to > crawl even! It is so hard to make these decisions and trade offs (I almost lost my job for being off so much for medical appts and travel with her for treatment) and my 3 year old started acting out. But at the end of the day, you just have to follow your heart and do the best you can for them. I truly believe that God is playing a role and the rest will work itself out. > Keep your head up! > Tina > > -------------- Original message -------------- > > I agree. Something doesn't sit right with me. > Thank you all. > > I talked (and cried) it out with Dh and we're getting a second opinion. There's a doctor in > Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I > called and got his PERSONAL VOICEMAIL!!! UNHEARD of. > > I'm anxious to hear back from him. I read more today that showed even for those - gosh, I > can't even type it without crying - even those who have growing rods and spinal fusion > lose 20-30 years on their lifespan because of the decreased lung function. How do I > make that decision for my son??? UUGH. > > Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 > months. They say at least every 4 months. > > Also, I dont' understand at ALL why they're calling it congenital when there is no spinal > defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a > cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's > office made ZERO mention of that. > > I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms > was under the age of 10. He's the best at what he does, but I just don't think THIS is what > he does. Jack having a severe curve is so rare. I mean - a tiny tiny population in the > country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I > don't feel like our surgeon is that person. > > I'm terrified of making the wrong decision. This is our baby. He has to live with this his > entire life. But, I think making an uninformed decision is the worst thing we can do. Even > our primary care doc said on day one, " If this is lifelong, you'll probably want a second > opinion. " > > I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about > leaving the girls. I'm worried about the financial aspect (Please, God, let our other house > sell!) and affording hotels and all the things that go with it. I'm worried about our car > doing okay up there and back repeatedly. But, we owe it to to at least SEE if there's > something else. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Tina, I was under the same impression as well. I thought the ETP had been cancelled and that he was still waiting on the training... Noelle (12-2-01) Ian (8-15-04) Re: Update on Hi Tina, I just wanted to let you know that Dr. Sturm was recently trained at an ETP held last year. So he is a " Mehta " trained doctor. informed me of that when I was looking for a doc in the Midwest. We were supposed to see Dr Sturm, but he has been out on medical leave for the past few months so we traveled to SLC. Thanks, > > Hello, > I just wanted to share that I started down the course of going to Chicago Shriners (we live in Indianapolis) for our daughter Sophia. They told me they did plaster casting of for scoliosis, but later found out there are two types (or more). The old Risser style and the " Mehta " early treatment plaster of Paris " jackets " . The specialist in Cincinnati was going to put her in the Risser style cast at 6 months but said it would not correct the rotation of the spine (RVAD) and could cause more lung problems since there was no cut outs. It was also more restrictive and could cause her more physical developmental delays (learning to crawl, walk,etc.). We then explored which hosptials did the " Mehta " style casting specifically and ended up traveling to Erie, PA and she goes back August 8th for her second cast. These are smaller and allow her more movement. It also has a large cutout that helps treat the rotation (hers was pretty bad) and limits additional lung problems. She is starting to > crawl even! It is so hard to make these decisions and trade offs (I almost lost my job for being off so much for medical appts and travel with her for treatment) and my 3 year old started acting out. But at the end of the day, you just have to follow your heart and do the best you can for them. I truly believe that God is playing a role and the rest will work itself out. > Keep your head up! > Tina > > -------------- Original message -------------- > > I agree. Something doesn't sit right with me. > Thank you all. > > I talked (and cried) it out with Dh and we're getting a second opinion. There's a doctor in > Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I > called and got his PERSONAL VOICEMAIL!!! UNHEARD of. > > I'm anxious to hear back from him. I read more today that showed even for those - gosh, I > can't even type it without crying - even those who have growing rods and spinal fusion > lose 20-30 years on their lifespan because of the decreased lung function. How do I > make that decision for my son??? UUGH. > > Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 > months. They say at least every 4 months. > > Also, I dont' understand at ALL why they're calling it congenital when there is no spinal > defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a > cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's > office made ZERO mention of that. > > I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms > was under the age of 10. He's the best at what he does, but I just don't think THIS is what > he does. Jack having a severe curve is so rare. I mean - a tiny tiny population in the > country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I > don't feel like our surgeon is that person. > > I'm terrified of making the wrong decision. This is our baby. He has to live with this his > entire life. But, I think making an uninformed decision is the worst thing we can do. Even > our primary care doc said on day one, " If this is lifelong, you'll probably want a second > opinion. " > > I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about > leaving the girls. I'm worried about the financial aspect (Please, God, let our other house > sell!) and affording hotels and all the things that go with it. I'm worried about our car > doing okay up there and back repeatedly. But, we owe it to to at least SEE if there's > something else. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 from Dale, Mom to Katy, grown, CVID Sandy, I know this has been really, really hard -- but finally, you have the support you need. Why take him off -- ever?????? I'll never understand trialing-off! Can you get doctor's orders to not send him back to school until his levels are up? Praying for you. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Hi SANDI , I wondered how you both were doing. I am glad the immuno had the lights go on!. I am sorry Bri and to suffer so much to get there. Has he done any testing yet? It would be good to get at least some labs since he has been over for several months. I have Lucas home from school mostly for mental health reasons but it is working well for him. The school district decided to buy SOS for us to get finished. It is through Alpha Omega Publications. Any way I hope you get it worked out for him. You have a wonderful young man there. BARBIE ________________________________ From: " sassykay59@... " <sassykay59@...> < > Sent: Wednesday, February 25, 2009 2:42:36 AM Subject: Update on Hello-- This has been a very difficult two months for Bri. First, he got the flu, although he gets a flu shot each year. He then got Pneumonia. Missed two weeks of school and finally went back. After eight days in school, he got the flu again (verified by nasal swab). He was given strong abx by his new Immuno so he wouldn't get Pneumonia again. He missed a week and half of school this time and then went back yesterday. For one day. This morning, he was vomiting. Apparently, he went back for just enough time to get the latest thing going around school (I called his Ped). They also said it was probably another type of flu. By the time he had the flu the second time around, his new Immuno just took one look at him and said he needed to be put back on his SubQ. I refrained from saying anything sarcastic like, " You think?? " Instead, I hugged him. I realized he had not really seen for himself just how sick Bri gets...and how often. We have an agreement that he will not take Bri off his subQ during a school year. Today, I called both Accredo and the Immuno's office and the treatment order is in the works. They are trying to get it completed by the beginning of next week. But now, I'm afraid to send him back to school!!!! This is why he was tutored here at home for so many years before treatment. He simply can't be around other kids without replacement Ig. As usual, his attitude remains simply amazing. No complaining. ..just dealing with it. Sandi, Mom to , CVID, age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 here's to restarting good things. Ursula Holleman mom to (16) and Macey (13) www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 saw her surgeon last Tuesday for her semi-annual check. She is doing well. We are looking at an expansion on her VEPTR in March/April according to him. Which means end of May/June to me because she will be out of school for the year on May 23. I don't see the point of taking her out of school at the end of March-beginning of April when it is really not going to make much difference for the expansion. That is also the time of year for our OAAs (aka: The PITA State Mandated tests) and I don't want her to have to make those up. Plus she is in 4th grade this year and the 4th graders always have a special day at the Y which includes swimming that I don't feel she needs to miss out on. She was complaining of a bit of back pain and it is right where the rod pieces slide into each other. The dr reminded her not to sit against anything hard and to have a pillow at school. She assured him she did. He also told her she could take ibuprofin or Tylenol and she said "Nope, no can do. I don't take medicine. I wouldn't even take it when I was a baby." After looking at me and I confirmed her words, he said "Ok, suffer then." But before anyone gets mad, he was totally joking with her and I said "That's what I tell her too!" Seriously, I told him she uses ice and we use topical pain relievers like BioFreeze and Tylenol's new Precision cream. They do seem to help. He also showed us her 3d CT scan - so very cool!!! I need to get a copy of that for my records! Other than that, is . Involved in Girl Scouts (need some cookies?), dance, her friends, penguins, drawing etc. My busy girl!! Gail********************************************************My current location: The corner of mayhem, foolishness, and total insanity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Its always nice to read updates on . Its great that she is not slowed down by her scoli a bit and that you make sure she doesnt miss out on important things! 5th grade next year! Amazing, how quick time goes by. Have a great wknd. HRH > saw her surgeon last Tuesday for her semi-annual check. She is doing > well. We are looking at an expansion on her VEPTR in March/April according > to him. Which means end of May/June to me because she will be out of > school for the year on May 23. I don't see the point of taking her out of > school at the end of March-beginning of April when it is really not going > to make much difference for the expansion. That is also the time of year > for our OAAs (aka: The PITA State Mandated tests) and I don't want her to > have to make those up. Plus she is in 4th grade this year and the 4th > graders always have a special day at the Y which includes swimming that I > don't feel she needs to miss out on. >  > She was complaining of a bit of back pain and it is right where the rod > pieces slide into each other. The dr reminded her not to sit against > anything hard and to have a pillow at school. She assured him she did. He > also told her she could take ibuprofin or Tylenol and she said " Nope, no > can do. I don't take medicine. I wouldn't even take it when I was a baby. " > After looking at me and I confirmed her words, he said " Ok, suffer then. " > But before anyone gets mad, he was totally joking with her and I said > " That's what I tell her too! " Seriously, I told him she uses ice and we > use topical pain relievers like BioFreeze and Tylenol's new Precision > cream. They do seem to help. >  > He also showed us her 3d CT scan - so very cool!!! I need to get a copy of > that for my records! >  > Other than that, is . Involved in Girl Scouts (need some > cookies?), dance, her friends, penguins, drawing etc. My busy girl!! > > Gail > ******************************************************** > My current location: The corner of mayhem, foolishness, and total insanity Quote Link to comment Share on other sites More sharing options...
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