Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 JeAnne, you look so beautiful! Your dress is fabulous and the beach is such a great location. Wow. The weekend really sounds grueling, but I'm so glad you did it and I can't wait for the episode to air! Beth ----- Original Message ----- Well this past weekend the taping was totally exhausting: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Congrats on getting through that ordeal! I know it will be worth it once it airs, though. How bubbling with pride you must be! Obviously all of us here are! Kudos to you! Update > Well this past weekend the taping was totally exhausting: > > Day 1: > In a word....exhausting. > > The crew showed up on time at 9:30AM for set up just as I was > finishing up lipstick AND de-fluffing/furring the couch The first > half of the day was my interview session which was long and > definitely emotionally draining. There were a lot of deep questions > about growing up, but then again without them, you wouldn't have the > contrast of the " now " I suppose. One of the funnier things was that I > smiled during talking about the painful bits and shed my first tears > when talking about the first time I met Chaz ... I'm such a dork! > > By the time the interview was over, my stomach was audibly growling > and I was SO THIRSTY! Who knew that talking for two hours would make > you completely dehydrated! I don't know how you teachers do it all > day...kudos to you We " broke " for lunch and then came back for Chaz' > interview and later my friend . Chaz is pretty good about > being sensitive and emoting on a regular basis, but I have to say, > the bits I heard were so emotional and passionate. I sat upstairs > with tears in my eyes and just thought over and over what an > incredibly lucky gal I am. > > Once the interviews were over, they had to videotape all the pictures > I had pulled...another painful reminder of weight associated with > pain/stress in my life. The videotaping of each picture took a long > time and having to give approximate weights/ages etc was pretty > draining. The day went about 45 minutes longer than planned and that > was 45 minutes too long! By the time they left, we descended upon > dinner and just sort of vegetated the rest of the evening. The day in > total was almost 10 hours. > > My only complaint is I didn't feel there was enough talk about > the " present " ..the changes in me and our lives. I guess a lot of that > will be by example today, but you all know how much I believe in the > power of word. I'm hoping that the sound will be on again and we'll > be able to tap into that the rest of this weekend. I don't believe > there will be sound during the cooking and the gym today but I could > be wrong. She may be jotting down things I say, or it may come up > again ...who knows? > > I gave it my best though! > > > Day 2: > ...more fun than Friday, but still a long day. First was > the " reenactments " ..little action segments to sort of recreate the > before life. So that was a few hours of typing words on a monitor > (spending time on the internet), recreating answering the door for > pizza or chinese, pouring bowls of cereal etc. This was tedious as we > did each thing several times. Then came the wardrobe changes and > reveals...probably the most fun of the day. Getting into my old > wedding dress and shimmying out of it in a sassy dress, getting into > an old denim dress with chaz and dancing out of it into a dip, being > covered in front with chinese take out boxes and tossing them > to " reveal " me in a fitted chinese dress. Hokey, cheesey but very > fun. Then came the cooking segment and then the gym segment where I > had to lift the same weight 100 times Talk about going to failure! > There was no break Sat, so unfortunately my eating was kind of all > over the place...a bit of chinese here, some of what I cooked, a > glass of water where I could...ugh. I could not wait to get back > to " normal " . > > Day 3: > It was less stressful, timeconsuming, or tedious compared to the > first two days. The producer and cameraman showed up at 9am to pick > me up (Chaz went down separately on the train). We got down there, > had a little settle in and then it was taping of the preparations. I > was starting to get a bit punchy at this point, so it was kind of > hard to repeat things and pretend I had never said them before. I had > to talk about my excitement of the dress, the wedding, how it was > different from the first time around...all great questions, but hard > to keep the enthusiasm fresh when you answer them 100 times > > Then the taping of the makeup being put on. Except I had to drag it > all out. I literally do my make up in under 5 minutes...this was like > a 1/2 hour experience. Then close ups of the lipstick tube rolling up > (hello phallic), close up of the eyeliner being applied etc etc. Then > the hair/veil segment. Then my friend showed up and the worst part > was " fake " conversation about pretty girliness and bride excitement. > I'm sorry, I'm just not that bubbly girlie kind of girl. Cara > (producer) said it perfectly.. " JeAnne, you have to do it your way. > I'm stuck at cute girlie girl at 40 and you're va va voom > sexy...trust me at 45, you'll be happy you have that to work with " > I'll take va va voom I never laughed so hard in my life > > So then it was Chaz' turn...putting on the tie, getting ready (sorry, > no up kilt shots! ) Then the ceremony (which was the shortest part of > the day) and then the champagne toast...we only had to do that four > times! Finally, they left around 5:30 and it was a fabulous dinner > with friends. Chaz and I crashed (so much for starting the > honeymoon...we were both EXHAUSTED!) and woke up early for a glorious > sunrise on our little deck outside our room. > > And now, I'm counting down to St Lucia...this time tomorrow, we'll be > air bound!!! www.thebodyholiday.com > > > Some pics from the ceremony can be found here: (Chaz is in kilt, > cameraman is the other dude I'm hugging) > > http://www.classprod.com/wed03.jpg > http://www.classprod.com/wed03a.jpg > http://www.classprod.com/wed03b.jpg > http://www.classprod.com/wed03c.jpg > http://www.classprod.com/wed03d.jpg > http://www.classprod.com/wed03e.jpg > > My website is temporarily down because dork that I am let the domain > name expire. Hopefully it will be up soon so I thank everyone that > emailed me about it. > > Hang in there everyone and keep plugging! > > JeAnne > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Those were some awesome pictures and it all seems so in keeping with your already awesome story. For some reason I thought you were already married. It is really cool though and I really like the kilt. My son wants to wear one because he says you don't wear underwear under a kilt. Stasia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Hi JeAnne, great pictures, beautiful smile, and you both look so happy. What type of video will this be? Is it for weight loss or a documentary of your relationship with your husband? Your pictures reminded me of mine. Have you considered porcelain veneers? After I saw my pictures I loved everything except the spaces between my teeth. I wish I had gotten veneers before my pictures. I had my pictures airbrushed so that the spaces between my teeth were not visible. http://www.jamesklim.com/options/fillingthegaps.html > Well this past weekend the taping was totally exhausting: > > Day 1: > In a word....exhausting. > > The crew showed up on time at 9:30AM for set up just as I was > finishing up lipstick AND de-fluffing/furring the couch The first > half of the day was my interview session which was long and > definitely emotionally draining. There were a lot of deep questions > about growing up, but then again without them, you wouldn't have the > contrast of the " now " I suppose. One of the funnier things was that I > smiled during talking about the painful bits and shed my first tears > when talking about the first time I met Chaz ... I'm such a dork! > > By the time the interview was over, my stomach was audibly growling > and I was SO THIRSTY! Who knew that talking for two hours would make > you completely dehydrated! I don't know how you teachers do it all > day...kudos to you We " broke " for lunch and then came back for Chaz' > interview and later my friend . Chaz is pretty good about > being sensitive and emoting on a regular basis, but I have to say, > the bits I heard were so emotional and passionate. I sat upstairs > with tears in my eyes and just thought over and over what an > incredibly lucky gal I am. > > Once the interviews were over, they had to videotape all the pictures > I had pulled...another painful reminder of weight associated with > pain/stress in my life. The videotaping of each picture took a long > time and having to give approximate weights/ages etc was pretty > draining. The day went about 45 minutes longer than planned and that > was 45 minutes too long! By the time they left, we descended upon > dinner and just sort of vegetated the rest of the evening. The day in > total was almost 10 hours. > > My only complaint is I didn't feel there was enough talk about > the " present " ..the changes in me and our lives. I guess a lot of that > will be by example today, but you all know how much I believe in the > power of word. I'm hoping that the sound will be on again and we'll > be able to tap into that the rest of this weekend. I don't believe > there will be sound during the cooking and the gym today but I could > be wrong. She may be jotting down things I say, or it may come up > again ...who knows? > > I gave it my best though! > > > Day 2: > ...more fun than Friday, but still a long day. First was > the " reenactments " ..little action segments to sort of recreate the > before life. So that was a few hours of typing words on a monitor > (spending time on the internet), recreating answering the door for > pizza or chinese, pouring bowls of cereal etc. This was tedious as we > did each thing several times. Then came the wardrobe changes and > reveals...probably the most fun of the day. Getting into my old > wedding dress and shimmying out of it in a sassy dress, getting into > an old denim dress with chaz and dancing out of it into a dip, being > covered in front with chinese take out boxes and tossing them > to " reveal " me in a fitted chinese dress. Hokey, cheesey but very > fun. Then came the cooking segment and then the gym segment where I > had to lift the same weight 100 times Talk about going to failure! > There was no break Sat, so unfortunately my eating was kind of all > over the place...a bit of chinese here, some of what I cooked, a > glass of water where I could...ugh. I could not wait to get back > to " normal " . > > Day 3: > It was less stressful, timeconsuming, or tedious compared to the > first two days. The producer and cameraman showed up at 9am to pick > me up (Chaz went down separately on the train). We got down there, > had a little settle in and then it was taping of the preparations. I > was starting to get a bit punchy at this point, so it was kind of > hard to repeat things and pretend I had never said them before. I had > to talk about my excitement of the dress, the wedding, how it was > different from the first time around...all great questions, but hard > to keep the enthusiasm fresh when you answer them 100 times > > Then the taping of the makeup being put on. Except I had to drag it > all out. I literally do my make up in under 5 minutes...this was like > a 1/2 hour experience. Then close ups of the lipstick tube rolling up > (hello phallic), close up of the eyeliner being applied etc etc. Then > the hair/veil segment. Then my friend showed up and the worst part > was " fake " conversation about pretty girliness and bride excitement. > I'm sorry, I'm just not that bubbly girlie kind of girl. Cara > (producer) said it perfectly.. " JeAnne, you have to do it your way. > I'm stuck at cute girlie girl at 40 and you're va va voom > sexy...trust me at 45, you'll be happy you have that to work with " > I'll take va va voom I never laughed so hard in my life > > So then it was Chaz' turn...putting on the tie, getting ready (sorry, > no up kilt shots! ) Then the ceremony (which was the shortest part of > the day) and then the champagne toast...we only had to do that four > times! Finally, they left around 5:30 and it was a fabulous dinner > with friends. Chaz and I crashed (so much for starting the > honeymoon...we were both EXHAUSTED!) and woke up early for a glorious > sunrise on our little deck outside our room. > > And now, I'm counting down to St Lucia...this time tomorrow, we'll be > air bound!!! www.thebodyholiday.com > > > Some pics from the ceremony can be found here: (Chaz is in kilt, > cameraman is the other dude I'm hugging) > > http://www.classprod.com/wed03.jpg > http://www.classprod.com/wed03a.jpg > http://www.classprod.com/wed03b.jpg > http://www.classprod.com/wed03c.jpg > http://www.classprod.com/wed03d.jpg > http://www.classprod.com/wed03e.jpg > > My website is temporarily down because dork that I am let the domain > name expire. Hopefully it will be up soon so I thank everyone that > emailed me about it. > > Hang in there everyone and keep plugging! > > JeAnne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 , It sounds like you are doing great! Colleen > Hello to all! > > > Ok, i just found out how to convert cm an kg into ft. and lbs. > > So I am 5,5 ft. tall and weigh(ed) 132 lbs. Just lost 4 lbs in the > first week of bfl. I think, that that is maybe a little too much for > one week, but i feel good and did everything exactly as it is > described in the book. > > Good luck to everybody > > Yours, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Oh, this is beyond sad. I am so sorry to hear this, but glad to hear that they chose to donate his organs. I am sure he is an angel in Heaven now. Noelle (12-2-01) Ian (8-15-04) update It is with great sadness that I pass this news on from my sister in law. passed away yesterday after battling to overcome his many injuries. His family made the decision to remove him from life support after it was confirmed he was brain dead. However, they gave the gift of life to possibly 8 other families through donating his organs. Thanks to all of you that prayed for this little boy and for his family. They will more than ever now need those prayers to move on from this tragedy and get ready to welcome yet another child into their family anyday now while they say goodbye to another. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Oh ! HUGS to you and the kids. What did you think of the "new" doctor? Is he/she any better than the prick? Gail Update hello everyone!Its been a few weeks since Ive posted! Things are crazy! Anyway, I took both my kids to the doctor for checkups this past Sat. Nate is now 18mos. and doing great! Hes talking like CRAZZY! "Whats that?" and "Whered it go?" are his favorites. Still not saying Mama yet though. Oh well. He will someday.Guess what! My daughter, Allainey, who will be nine on Aug 20th, has now been diagnosed with juvenile scoliosis!!! I asked the doctor to check out her sunburn she got on Thursday and he asked her to bend over and ... she had a NOTICABLE rib hump!!! AAAUUGGHHH!!! She was FINE at her last checkup in April of last year. I took her to see "the prick" this morning. Since I wanted the soonest appointment possible, I met with a "new" doctor who did xrays and measured a double 20* curve. Left Lumbar and Right Thoractic both 20* + or - a few. They had an xray taken in October of her abdomen, and she was straight!! He was quick to order an MRI though. Nate still hasnt had one. He told me that since she is much older than Nate that she will NEVER be corrected, unless it corrects itself. We are waiting for the MRI results (MRI is scheduled for Aug 9th) to decide on what to do next. H. I know that Olivia was much younger when she was diagnosed, but now that shes older do you have any ideas on what we can do for Allainey?? Im freaking out now!! Can she be casted to prevent it from getting worse? Or should we try bracing? What now?? Ive been so worried about keeping up with Nate and infantile, that I didnt even THINK about Lain. They have different fathers!! I dont have scoliosis. Alley thinks she "caught it from her brother." I am so stunned that I dont even know what to say to her. I just shrugged if off like it was no big deal. I told her that "Nates was 21 and look at him. He looks perfectly healthy, happy, and normal. You will be fine." Even though I know that HIS is correcting---so far (went from 21* to 13* Dec to May)--- and hers probably wont.... I just dont know where to go from here. I think Im still in shock.Sorry for rambling on... Any comments are completely welcome!! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 , Just wanted to tell you that my brother was diagnosed at the age of 9 with Scoliosis. I am so not a wait and see person but this time it was okay. He had a low curve like your daughter and had to do exercises for 1 year and then it was gone. I never even knew, he told me when was diagnosed. You poor thing!!!! You must be going crazy. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Thanks Gail! HE seems better. Hes definatly more on the ball then the prick. As far as the MRI and all, but then shes older and a girl and more likely to progress.... I just dont know. Just talking about it still boggles my mind. Im just stunned.... > Oh ! HUGS to you and the kids. > > What did you think of the " new " doctor? Is he/she any better than the prick? > > Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 Thanks Crista! I could only hope!! Thats a lot better prognosis then what her ortho said. " she can only get worse from this point, theres no way to get it to correct. " Thank you! Any good thoughts and experiences help! I just thinking of all the positive things I said about Nate that are negative for Lainey. Hes not a girl- they are more likely to progress, Hes still a baby- more likely to self resolve. I need something positive to reasure me! My poor baby! Shes already been through so much!! I just dont even know how to help her deal with this!! > > > , > Just wanted to tell you that my brother was diagnosed at the age of 9 with > Scoliosis. I am so not a wait and see person but this time it was okay. He had > a low curve like your daughter and had to do exercises for 1 year and then it > was gone. I never even knew, he told me when was diagnosed. > You poor thing!!!! You must be going crazy. > > > Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Man. You should see MY sink. Our dishwasher is broken, and the dishes have been there for 2 days. At least handwashing them burning calories. I take any chore into consideration for exercise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hi tracey, I think I remember that Breana had her tonsils out not too long ago, right? Drew had his out at Hasbro in providence, and has at least been sleeping better overall- also an early riser, but it's amazing what 6 hours of continual sleep will do for you! In Boston, Drew has seen Dr Kim (a fellow) Dr. Woodworth, and most recently Dr. (all in rheumatology). Dr Kim and woodworth he saw the first time, and they had recommended the tonsillectomy, and then when he was so bad after and his pediatrician wanted him seen again, we saw Dr. because she had an opening and the others didn't until Nov. I liked her the best- although we did have to wait 2 1/2 hrs AFTER our scheduled time before she even walked in the room, she spent a good hour with us and I felt she was thorough and the only doctor so far who said she would consider trying cimetidine if the fevers persisted!! We have a follow up Nov 18th. Who do you see there? And, what is clodine? Thanks- and here's to some sleep finally! mom to Drew, almost 3 town, RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Hi tracey, I think I remember that Breana had her tonsils out not too long ago, right? Drew had his out at Hasbro in providence, and has at least been sleeping better overall- also an early riser, but it's amazing what 6 hours of continual sleep will do for you! In Boston, Drew has seen Dr Kim (a fellow) Dr. Woodworth, and most recently Dr. (all in rheumatology). Dr Kim and woodworth he saw the first time, and they had recommended the tonsillectomy, and then when he was so bad after and his pediatrician wanted him seen again, we saw Dr. because she had an opening and the others didn't until Nov. I liked her the best- although we did have to wait 2 1/2 hrs AFTER our scheduled time before she even walked in the room, she spent a good hour with us and I felt she was thorough and the only doctor so far who said she would consider trying cimetidine if the fevers persisted!! We have a follow up Nov 18th. Who do you see there? And, what is clodine? Thanks- and here's to some sleep finally! mom to Drew, almost 3 town, RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Hi, Breana is seen by Dr. SUndel the head of the Dept(Rheum) and Dr. Binstadt fellow. She had her tonsils removed by Dr. Licamali also at Boston...ENT dept. I would recomend that if you want to contiue with Dr. that you ask for her email address. I have all of Breana's doc's emails at BCH and they are ALL very quick to reply! Dr. Binstadt I swear has his pager linked to the email! I have had times when I had to wait but never that long it must have been so hard! The time I had to wait a little while I told the nurse that we would be in the waiting room playing until the doc was ready to see us! to hard to sit in that little room! The Clonidine is an antianxety med by 'classfication' but is used in this case to help breana's sleep issues. > > Hi tracey, > I think I remember that Breana had her tonsils out not too long ago, > right? Drew had his out at Hasbro in providence, and has at least > been sleeping better overall- also an early riser, but it's amazing > what 6 hours of continual sleep will do for you! In Boston, Drew > has seen Dr Kim (a fellow) Dr. Woodworth, and most recently Dr. > (all in rheumatology). Dr Kim and woodworth he saw the > first time, and they had recommended the tonsillectomy, and then > when he was so bad after and his pediatrician wanted him seen again, > we saw Dr. because she had an opening and the others didn't > until Nov. I liked her the best- although we did have to wait 2 1/2 > hrs AFTER our scheduled time before she even walked in the room, she > spent a good hour with us and I felt she was thorough and the only > doctor so far who said she would consider trying cimetidine if the > fevers persisted!! We have a follow up Nov 18th. Who do you see > there? And, what is clodine? > Thanks- and here's to some sleep finally! > > mom to Drew, almost 3 > town, RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Hi, Breana is seen by Dr. SUndel the head of the Dept(Rheum) and Dr. Binstadt fellow. She had her tonsils removed by Dr. Licamali also at Boston...ENT dept. I would recomend that if you want to contiue with Dr. that you ask for her email address. I have all of Breana's doc's emails at BCH and they are ALL very quick to reply! Dr. Binstadt I swear has his pager linked to the email! I have had times when I had to wait but never that long it must have been so hard! The time I had to wait a little while I told the nurse that we would be in the waiting room playing until the doc was ready to see us! to hard to sit in that little room! The Clonidine is an antianxety med by 'classfication' but is used in this case to help breana's sleep issues. > > Hi tracey, > I think I remember that Breana had her tonsils out not too long ago, > right? Drew had his out at Hasbro in providence, and has at least > been sleeping better overall- also an early riser, but it's amazing > what 6 hours of continual sleep will do for you! In Boston, Drew > has seen Dr Kim (a fellow) Dr. Woodworth, and most recently Dr. > (all in rheumatology). Dr Kim and woodworth he saw the > first time, and they had recommended the tonsillectomy, and then > when he was so bad after and his pediatrician wanted him seen again, > we saw Dr. because she had an opening and the others didn't > until Nov. I liked her the best- although we did have to wait 2 1/2 > hrs AFTER our scheduled time before she even walked in the room, she > spent a good hour with us and I felt she was thorough and the only > doctor so far who said she would consider trying cimetidine if the > fevers persisted!! We have a follow up Nov 18th. Who do you see > there? And, what is clodine? > Thanks- and here's to some sleep finally! > > mom to Drew, almost 3 > town, RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Hi! It must be good to have some of the appts over with. They thought I might have MS at first but the MRI ruled it out. I have spasmodic torticollis (cervical dystonia). Lee > Well some of the doctor's appts have come and gone. My neurologist is looking at MS but is doing a spinal tap in May to either confirm or rule it out. My Oncologist has released me to have the tests ran by my regular doctor. So I will not see him again unless something develops in the tests. I got a copy of my kidney biopsy and the results were actually that type that can progress to kidney failure. But he has me on the medication that I need to be on. My hubby told me yesterday he doesn't mind me getting all this stuff but could I please get something that has a cure. Well I would like that too. Oh well it keeps life interesting. > Hope are all doing well. I have been working as much as I can as we are redoing the house slowly and I need new windows and doors and we want to put Nova Brick on the house this summer. My ex-son-in-law moved in a week ago, he left a very bad relationship and since he is still almost like a son we gave him a spare room. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 In a message dated 5/16/2005 5:23:12 PM Eastern Standard Time, laurenmarie791@... writes: we are looking for adults with SMA and severe upper extremity weakness to participate in a UW study. the study involves utilizing the brain to complete tasks on a computer. We need to find local adults who are willing to come in a few times for 2-3 hours at a time. I'd be interested in the details... Amy M. Marquez McHenry, Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 , I am a teacher of the visually impaired and have worked with 3 students with Neurofibramotosis,(both type I and type II), and am pretty familiar with all that it entails. I actually worried about Ian having this as he has one large cafe-au-lait spot. You can email me if you want to talk at all. Also, did you keep your appointment with Dr. Betz at the Philly Shriners? I think I recall reading that he specializes in treatment of kids with neurofibramotosis. I know it's a lot to digest right now, but I am glad that they are leaning towards it not being cancerous. (((HUGS))) Noelle (12-2-01)Ian (8-15-04) Update Well it's was a very exhausting weekend and an even more exhausting Monday. We took into NMCP around 9am by the time we finally got there. They were all about admitting her until and I told them we wanted some answers on why and what they planned to do all weekend since they were talking about removing the mass on her spine Tuesday. So the Doctor on the ward started explaining what their concerns were and what they planned to do which was basically run some test and watch her closely. We asked if it was really needed if they were going to wait until Tuesday to really do anything. So he said he would have to totally examine her and then we could all talk with the doctors make the calls on weather she stayed or got to go home since we had planned a 1st birthday BBQ with my In-law who drove in from Buffalo Friday night and a few close friends to celebrate that I had canceled the night before. Not to mention the Airshow my whole family was looking forward too. So he started examining her and then started asking a dozen questions about these birth marks she has that are called cafe-au-lait spots we just thought they were basic birth marks as our second oldest also has them. Plus these axillary freckling which is one of the main signs of something called Neurofibromatosis which is normally not cancerous. SO once they saw her and how normally a 2 and half year old she seemed they were ok with us taking her home for the weekend long as we returned today to talk with the neurosurgeon and then have a CT Scan again this time including her brain which the one last Wednesday did not. We had to talk with like 5-6 doctors before we were able to bring her home one being an Oncologist who was still concerned of the possible of Cancer but said she would let us go long as if there were any changes or fever or anything we would page her and meet her at the hospital and we had to watch her very closely for signs that her limbs were going numb which they gave us a list of things to look for. Then I decided once we got home to try and put the party back on so I started cooking sent DH looking for a birthday cake since I canceled the ordered one the night before. I tried contacting everyone we had invited but couldn't get in touch with 2 of them. so it was a small get together but it was so nice to think about something else for a change I actually laughed when I hadn't in close to a week. Then we took the kids to the Airshow on Sunday and went to dinner with my in-laws that night. as they left top head back home this morning. Then this yesterday morning we got to the hospital for her 8 am appt and knew she should also being having test and a CT scan but didn't have times or where to go. So we asked the Neurosurgeon who didn't know much expect to tell is to see the peds surgery to find out what we are doing next. So we went to his clinic to find out he would be in surgery all day and I totally lost it so the lady called his nurse practioner and she found out that was being admitted to the hospital and would be having a scan and many test run. So we went up to the ward got her admitted then went down stair for an MRI and Ct Scan again. We were told when they took her back that it would be an hour for the MRI of her brain and about 15 -20 minutes for the CT Scan well it took over 2 and half hours for the MRI and about 45 minutes for the CT Scan. Then we had to go back up to the ward to wait and talk to the different doctors working her case. They now are trying to figure out the next step we have 3 doctors on the team wanting to do a biopsy and 2 wanting just to take the mass out and then find out if it's cancer or not. The believe that will all the new things they found it's Neurofibromatosis which normally isn't cancer but like they said everything can point in that direction but it could still be something else. The bad thing is there is no cure for NF1 which is short for what they are thinking and it's something and can cause her to go blind and she will keep getting tumors that need to be removed through out her life when she gets older she's at a very high risk of Cancer. They also found the starts of about for tumors in her brain that will need to be watched very closely. So we are still waiting to figure this all out no one knows for sure what it is and won't until they get the biopsy and we are very concerned as to the placement of this tumor which is very large already. The neurosurgeon hasn't worked on many kids and no one 's age or size or in the area this on is which is in her Spinal Canal the biggest concern they have is that it may already be attached to the spinal cord and when it was explained what they have to do both to remove it and to get a biopsy was pretty scary. They will have to deflate one of her lungs to be able to get to it. She will need to be in the hospital at least overnight and more then likely 2-4 days as just the biopsy can be pretty dangerous due to what they have to do to get it. We are waiting to hear when they will be doing it as they schedule surgery for next Monday but one of the doctors who needs to be there can't be and he doesn't want them removing it with out knowing what they are dealing with for sure so he's pushing for the bossily. We will be pretty busy trying to see if we can find a neurosurgeon with more expertise on this type and kids. So I will keep you informed as more information becomes available there is so much to think about and information to take it I can't think straight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 , Please know you and your entire family are in our thoughts and prayers. I'm glad you were able to have some family time this past weekend. I can only imagine how much stress you are going through with all of this new information. I sincerely hope you can find a good team of specialists that can help 100%. Good luck and keep us posted. I hope by typing out the information for us to read, it is theraputic for you to absorb all the information and get an emotional handle on things. We're glad to help! My best! Carmellmom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________ Mobile Take with you! Check email on your mobile phone. http://mobile./learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2005 Report Share Posted May 20, 2005 Great update Stuart Why don;t you try doing 2 or 2.5 hourly dosing. You can cut it down or keep the same, I would probably cut it down a bit since you are relatively few rounds. There are several now that have foudn this makes a significant difference, us included! Mandi - posted my tome just now We've seen the gains mainly kept, it's been kind of 2 steps forward, half back. We adopt a 3 day, 3 hour dosage schedule, so I may revise that - any ideas appreciated. He weighs 60lb and we give 12.5mg of ALA, 12.5mg of DMSA.I'd also add that we've had far worse side effects with supplements than we had with low/steady DMSA/ALA. Magnesium & CLO were the ones that we had real aggro with - one caused what I can only describe as hypermanic behaviour, the other was merely megamanic." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Thanks Mandi, Saw your posting on the update - great job! I thought it was really helpful in presenting the variations in protocol. Like you, I'm not particulalry worried which protocol I use as long as it's safe and effective. I wrestled with td-dmps vs dmsa/ala, went with dmsa because of lead, haven't ruled out dmps later. The cilantro is really interesting. You can't help but feel there's something there, if only more was known about dosage levels/timings. Thanks for the info on the dosages, I'll give it a go next round. Any ideas on how best to divide up dosages? We've got 50mg DMSA & 25mg ALA capsuls, probably want o go down to 10mg & 6mg if 2 hourly. And whiel i've typed this, my little boy has just come down the stairs - having dressed himself! He looks very pleased! I'm off to make a fuss of him . Stuart >From: Mum231ASD@... >Reply-Desperate4DMPSEurope >Desperate4DMPSEurope >Subject: Re: update >Date: Fri, 20 May 2005 20:40:43 EDT > >Great update Stuart > >Why don;t you try doing 2 or 2.5 hourly dosing. You can cut it down or keep >the same, I would probably cut it down a bit since you are relatively few >rounds. > >There are several now that have foudn this makes a significant difference, >us included! > >Mandi - posted my tome just now > >We've seen the gains mainly kept, it's been kind of 2 steps forward, >half back. We adopt a 3 day, 3 hour dosage schedule, so I may revise >that - any ideas appreciated. He weighs 60lb and we give 12.5mg of >ALA, 12.5mg of DMSA. > >I'd also add that we've had far worse side effects with supplements >than we had with low/steady DMSA/ALA. Magnesium & CLO were the ones >that we had real aggro with - one caused what I can only describe as >hypermanic behaviour, the other was merely megamanic. " > > > _________________________________________________________________ Winks & nudges are here - download MSN Messenger 7.0 today! http://messenger.msn.co.uk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 It is not that difficult to divide the capsules. I tip the contents on a bit of baking paper with a crease in it, half the amount with a knife, half it again until I get close to what I want. I then push one portion onto another bit of paper (the crease helps getting it where you want it). From there I refill it into an empty capsule ready for use (again a crease helps to get it into even quite small capsules which I use at night). Dagmar. Re: update>Date: Fri, 20 May 2005 20:40:43 EDT>>Great update Stuart >>Why don;t you try doing 2 or 2.5 hourly dosing. You can cut it down or keep>the same, I would probably cut it down a bit since you are relatively few>rounds.>>There are several now that have foudn this makes a significant difference,>us included!>>Mandi - posted my tome just now >>We've seen the gains mainly kept, it's been kind of 2 steps forward,>half back. We adopt a 3 day, 3 hour dosage schedule, so I may revise>that - any ideas appreciated. He weighs 60lb and we give 12.5mg of>ALA, 12.5mg of DMSA.>>I'd also add that we've had far worse side effects with supplements>than we had with low/steady DMSA/ALA. Magnesium & CLO were the ones>that we had real aggro with - one caused what I can only describe as>hypermanic behaviour, the other was merely megamanic.">>>_________________________________________________________________Winks & nudges are here - download MSN Messenger 7.0 today! http://messenger.msn.co.uk No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.322 / Virus Database: 266.11.14 - Release Date: 20/05/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 T%hanks Dagmar, I shall give it a go. Regards, Stuart > It is not that difficult to divide the capsules. I tip the contents on a bit of baking paper with a crease in it, half the amount with a knife, half it again until I get close to what I want. I then push one portion onto another bit of paper (the crease helps getting it where you want it). From there I refill it into an empty capsule ready for use (again a crease helps to get it into even quite small capsules which I use at night). > > > > Dagmar. > > Re: update > >Date: Fri, 20 May 2005 20:40:43 EDT > > > >Great update Stuart > > > >Why don;t you try doing 2 or 2.5 hourly dosing. You can cut it down or keep > >the same, I would probably cut it down a bit since you are relatively few > >rounds. > > > >There are several now that have foudn this makes a significant difference, > >us included! > > > >Mandi - posted my tome just now > > > >We've seen the gains mainly kept, it's been kind of 2 steps forward, > >half back. We adopt a 3 day, 3 hour dosage schedule, so I may revise > >that - any ideas appreciated. He weighs 60lb and we give 12.5mg of > >ALA, 12.5mg of DMSA. > > > >I'd also add that we've had far worse side effects with supplements > >than we had with low/steady DMSA/ALA. Magnesium & CLO were the ones > >that we had real aggro with - one caused what I can only describe as > >hypermanic behaviour, the other was merely megamanic. " > > > > > > > > _________________________________________________________________ > Winks & nudges are here - download MSN Messenger 7.0 today! > http://messenger.msn.co.uk > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Glad to hear 's able to get up. I was stuck laying flat for over 3 months when I broke a femur. (mainly because it was casted incorrectly). It took me 4 months to get full arms strength back. Is 's ankle in a cast, splint? PT can do more harm than good and can break bones in adults with sma. If she's having a lot of pain sitting up, pt is going to torture her. When I broke my ankle (it wasn't a complete fracture, it was a greenstick fracture) I found taping gel ice packs to splint it worked best. It cushioned my ankle. I also let the foot hang as much as possible. If the ankle has been properly diagnosed and given adequete immobilization you should make an appointment with a pain specialist and demand more pain meds in the meantime. A lot of doctors these days do not treat sma pain at all, especially durin sprains and fractures. s in our prayers here. Get well fast! > update from rebeccas sis-in-law.... > > hi everyone, > > beck is getting up more, but is still having a lot of pain in one ankle, and feels general weakness. As everything gets better, her ankle has stayed painful. so...she has not been online and is very lonely and bored. She could use a friendly phone call...hint hint. > > We are trying to get her in to see dr. ward to look at her ankle and hopefully start some physical therapy. > > by the way...we are looking for adults with SMA and severe upper extremity weakness to participate in a UW study. the study involves utilizing the brain to complete tasks on a computer. We need to find local adults who are willing to come in a few times for 2-3 hours at a time. You would be paid $10 an hour. If you have any interest please contact me...and pass the info on to as many as possible. thanks! > > tj > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Dear , Wow I am so sad for you. What a bugger! I will be saying lots of prayers for your little over the next couple of months. Good luck finding a surgeon who knows what he is doing in removing her tumor. You don't reallly wnat the "I'll give it a go man!" I have a friend who has a little boy with NF. He is 9 now and a great kid. I know his Mum researched tenaciously initially but now she says she found far more negatives than positives and he is going along really well at the moment so she says she is happy to keep away from the keyboard at the moment. Anyway we are thinking of you over here in Australia and also little . Good luck and also to your other kids. Bert Darryl and their 4 kids Kezar <hogmech1@...> wrote: Hi everyone had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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