Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Hi Teri, I had my operation (Swedish band) on the same day as you, on March 31! I have lost 82 lbs and have about another 20 to 30 to go. My weight loss has slowed down considerably though, lately. I will probably need another year to get to my goal weight. Yes, if the band is to tight, it can grow into the stomach. This is called migration. I couldn't beleive that this is possible, but my surgeon assured me it can happen. A Swedish band should never be filled more than 9 ml. Hope this helps Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 Carmelina, Did you contact CoSAC 1-800-4-autism or 1- and get their parent packet. In it there should be a list of autism programs/schools in NJ. I don't know what therapies your child needs. What has worked best with my son is ABA. So I was looking for a school based on ABA. Kenny will be going to Sawtelle Learning Center in Montclair, NJ. He will also receive OT and Speech there. I'm also continuing my home ABA program after school and on weekends, and will still see my private OT and speech. IN county you have Allegro. In Bergen county, there are alot of schools, the big ABA schools are Alpine Learning Group, IEA, Epic, a few people on this list go to . A lot of these schools are filled up (even the public programs are full) I suggest to visit as many as you can and get on their waiting lists. In the meantime start your home ABA program. If the CST can't find an appropriate placement, maybe they'll pay for a home program ( it's most restrictive environment but you have to provide for your child's needs) DON'T sign the IEP unless you are sure about everything in it. (Go with your gut feeling) With the initial IEP they need your signature to implement it and if you sent your request to evaluate, 4 mths before age 3, they have to have something set up for you at age 3 (or they have 90 days from when you contacted them) If you feel you need help in getting your child appropriate services, you might want to contact an Advocate or Attorney. Good Luck! Ezzie --- cl7632@... wrote: > Hi To All, > I'm new to you group and would like to thank > eveyone for the > infomation posted. I have a 3 1/2 yr diagnosed ASD. > Live in > County, working on our IEP with the child study > team. Also fighting > for additional services in the IEP, like a monitor > on the bus. > I've visted several schools in various > counties, (the program in > town is not sufficient, its 1/2 day and no OT)I > would like to know > what programs (or Schools)are recommended in Bergen > County. > Thanks, > Carmelina > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Welcome to Aiden and his mommy :-) I am Dawn, 24 mum to Ibrahim Jerry (3 years, nursed for 18 months), Elijah Iman (16 months, nursed 6 months) and Ethan Adnan - 10 week old little boy who came a 1 1/2 months early and has a heart defect and needs open heart. Elijah is the only one who ever got formula. I could cop out and say he got it because I got pregnant when he was 5 months old and with my history (I have lost 2 babies in the 5th month and 2 m/c) I couldn't have nursed (I would have stopped, its hard loosing so many!), but we began to stop before I knew I was pregnant. Neither of us enjoyed it. At the time I didn't know why, but there was so much turmoil in my life (the beginning of the end for hubby and I) and it had to have leaked to Elijah. But Ethan may well be my last child, and with a serious birth defect, he *WILL* get the best. Breastmilk all the way, baby! And even though he is suffering from failure to thrive, we are working with the ped and the cardiologist to ensure that he gets only bmilk and continues to grow (albeit, very slowly). *************************** Dawn - Loving Mum to: Ethan Adnan (35-weeker, 8-25-00, VSD - heart defect, needs corrective surgery) Elijah Iman (7-2-99, developmentally delayed) and Ibrahim Jerry (9-10-97) ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Wendi wrote: Ais, Welcome to the list. Thanks, Wendi! BTW, I love your site . . . tons of great information! Ais Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 KimB wrote: Hi Ais, How do you pronounce you're name, I've never seen it before? Hi Kim! Well, it's not actually my name. ) My name is Bethany -- Aislinn is the name I used to use in the SCA, which is a medieval recreation group. I use it mostly out of habit, and because it's quicker to type! To answer your question, though, it's an old Irish name. It's pronounced either AYS-lynn (modern Irish) or ISH-leen (old Irish.) It was originally a man's name, but it's been enjoying new popularity for girls in the 20th century. LOL That's why I don't use it in the SCA anymore -- it wasn't an accurate usage, as I'm not a man ) But it's still my e-mail address and it's still a habit. Ais Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 KimB wrote: Hi Ais, How do you pronounce you're name, I've never seen it before? Hi Kim! Well, it's not actually my name. ) My name is Bethany -- Aislinn is the name I used to use in the SCA, which is a medieval recreation group. I use it mostly out of habit, and because it's quicker to type! To answer your question, though, it's an old Irish name. It's pronounced either AYS-lynn (modern Irish) or ISH-leen (old Irish.) It was originally a man's name, but it's been enjoying new popularity for girls in the 20th century. LOL That's why I don't use it in the SCA anymore -- it wasn't an accurate usage, as I'm not a man ) But it's still my e-mail address and it's still a habit. Ais Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2000 Report Share Posted November 9, 2000 Kat, Welcome to the list. I am Wendi (listmom) and mother to two. Kaija is almost nine and Zaid (my nursling) just turned three. Wendi http://www.lactivist.com " When individuals have been born gently, welcomed kindly into the community, breastfed for many years, they do not become greedy people. They come from a place of fullness and balance with all our relations. " Jeannine Parvati Baker New member Hello My name is Kathleen (kat) and I am a mother of 4. the youngest being 3 months who is breastfed. I do work part time and pump for her. I hope to breastfeed her for 12-18 months. I truly enjoy this wonderful bond that has come from breastfeeding. and knowing that after i nourished her inside me for so long. that giving her the best food is something that only I can do for her! Anyway. I hope to get to know you and share information and support! kat Give the Gift of Life Breastfeed! http://www.lactivist.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Carina I was in hospital over night and i found there was no pain for me at all just uncomfortable lol for the trip home LOL New member > Hi everyone, > > I have just joined this list. I am booked in for my Adj. Lap band surgery on > July 10th (in Melbourne) and I'd like to hear from others about the > surgery/recovery. etc. I had Gastric banding (the old 'un adjustable' one) > about 10 years ago it went fine for a while I lost weight, but then I > started having problems and after years of putting up with constant vomiting > and living off icecream and milk (the only things I could keep down) I went > and saw another surgeon (my original surgeon - when I told him I was having > trouble, basically said - get used to it and that I must be eating the wrong > stuff so its my own fault! - so I never went back to him!) Anyway my new > surgeon sent me for tests, and it turned out the band had slipped and had > formed a 'pouch' that all the food collected in and didn't continue to > travel down, this was why I was unable to eat anything solid, or even > anything slightly gas forming as the gas sitting in my stomach was as bad as > the food sitting there. Anyway I had a reversal done about 2 years ago now, > and was determined that I wouldn't put on weight again! Huh! Like that plan > just went straight out the window! So last year I went back to my surgeon > and we decided on the adjustable band. > > I'd really like to know how the recovery period etc. and the pain level of > the surgery etc. is. I recall how bad I felt after my first surgery and I > am hoping that this time round things will be a bit different. > > I am on digest so please anyone feel free to e-mail me directly if you want > to. > > Regards > Carina > > > > > > > > > > ozband website: > http://www.ozband.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Welcome Donna! My name is beth and our son Josh - who is also 9 - just completed his reconstruction with Dr. Brent this past March. Gosh, where to begin? Have you received his pamphlet on " Two Decades of Auricular Reconstruction " ? If not, call his office and ask for one. It completely outlines the procedures and has a lot of pictures. We were completely up-front with Josh regarding the surgeries, all they entailed, and the pain associated with any surgery. We even role played and went through some " dry-runs " regarding anesthesia. Has Alan ever had surgery before? If you want the info on airfare assistance that I have, please send me your e-mail address and I will forward it. Also, I would check with your insurance company regarding surgical and transportation coverage. If it's not acceptable, fight for the coverage you deserve! If you want, please feel free to e-mail me at heyboucher@... with any specific questions, or post them here. Alan is about to make a lifelong friend in Dr. Brent who is a wonderful man. He will take all the time you need to ask questions and feel comfortable. Are you aware of the hospital apartment? They're a great deal and definitely nice especially for the first surgery where it will be comforting to be close to the hospital. Glad to have you on the list and God bless you! Hey, maybe Josh and Alan would like to chat sometime? Love, beth _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Hello Silverio and welcome to the group! Gian Pio is very blessed to have such a strong advocate for a father! It is wonderful that you have already met with Dr. Brent and Dr. J for consultation. I have a son Josh, with unilateral microtia, who is almost 10 and has completed his reconstruction with Dr. Brent. God bless you and your family! Love, beth > >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: New Member >Date: Mon, 15 Jul 2002 07:13:37 -0000 > >Hello, >I'd like to introduce myself,as I just reach this >group,at this address. > >I'm the father of Gian Pio a 3 years old child >with left microtia/atresia grade III. > >We live in Italy,I alredy had opportinities to >met on the web the supporting group from >which I get informations and address in order >to build a clear picture of " microtia " (till that >moment completly unknown). >I was also at meeting with Dr.Brent/Jas. last >april 2000 in N.Y. > >I'd like to be in contact with all of you to get (and >eventual to give) any informations which >should be important for Gian Pio further steps. > >Thanks >Silverio > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 I'm hoping to get up to NY in October as well. ...... JACK!!! Should I register anyway and hope I make it or can I call a week or so before???). anna lynne you think i'd EVER tell YOU what to do???? NO WAY!!!! you are ALWAYS welcome! uncle jack (of course...if you register too late you will be INeligible for the door prize raffle of matching Mercedes cars, lifetime free medical care, a house on the french riviera and a lifetime supply of fruit-by-the-foot, but i know you don't care about ANY of THAT stuff....) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Lori, I have lived in NJ all my life and it never ceases to amaze me how many places in this tiny state I have never heard of! Oh well, guess I don't get out much! (note to self: Speak to husband about this!) LOL As for your questions...I honestly can't remember ever having a problem keeping Evan's hearing aid on. The only thing I do remember is when he was very small, before he started sitting up and crawling, he would roll all over the floor and it would get knocked off. The older he got, the more he wanted to wear it as he realized that he needed it to hear. Initially, after his surgery with Dr. J. last Sept., he did not wear the aid anymore. He still does not wear it to school as he is always placed in the front row and swears that he can hear everything said. His grades have never suffered and his teacher last year said he was a wonderful student. I'm interested to see if things go the same way when this school year begins. However, he has begun wearing it when he watches TV at home. Not so much that he can't hear the TV, just that he has to put it louder than what the rest of us would normally like and to be honest, it gives me a headache when it is that loud!!! It saddens me to see him wear it again because it brings to mind that if he had his OTHER canal opened, he wouldn't have to wear it at all!. I'm hoping to get up to NY in October as well. I'm not 100% sure as Evan is having surgery on the 12th of Sept. so I'm doing a wait and see thing. (Hey JACK!!! Should I register anyway and hope I make it or can I call a week or so before???). Just be diligent with and her aid. Try to distract her when she grabs for it. If there are times she just won't keep it on, so be it, it's not the end of the world and eventually she'll realize how much she depends on it to hear all the interesting stuff going on around her! Lynne lori0604 wrote: > > Hello, Thanks again for the welcome. > > I live in Hillsborough, probably about an hour from you. Maybe we > should start a local support group? I'm so glad for the conference > in NYC with Dr. Brent and Dr. J, even though nothing is going to be > done for 5 years (!) at least I'll get to meet you and other members > of this site. I was so disappointed last year when it was cancelled. > > I'm so glad to hear that Evan is doing so well. Since Evan's was > bilateral, how did you get him to keep his hearing aid on? > loves to take it off and nibble on it or put it around her foot. > Loves to rub food in it. I feel like my biggest challenge right now > is to keep it on her head. Does Evan still wear a hearing aid, or > was the surgery sucessful and he doesn't need to? > > Lori > > > > > > > > Hello everyone, > > > > > > Although my daugher is 13 months old and has bilateral atresia > > > microtia, I have just found out about this site. I have been > reading > > > through the messages (and archives) and I have found it both > > > comforting and frightening. I have realized how much I still need > to > > > learn. wears a bone conducting hearing aid and does > pretty > > > well with it as she also gets speech therapy once a week. Her > speech > > > is developing almost age appropriately. She now gets physical > > > therapy once a week as her gross motor skills are delayed (she is > > > just starting to (almost) crawl, more like dragging on her belly > and > > > she has yet to actually bear weight on her legs). Her fine motor > > > skills are excellent. She is just a wonderful beautiful happy > little > > > girl and brings such joy to our lives. > > > > > > I was wondering if you have had similar experiences with your > > > children (or yourselves?) having a delay in gross motor skills > and no > > > explanation? The doctors do not think there is anything > physically > > > wrong. > > > > > > Also, I was wondering if any of you are located in New Jersey? > I'm > > > in central New Jersey. > > > > > > Jack, I know you check this web site, and although we have only > > > spoken once, I have thought of you and your family and have prayed > > > that they are safe over there in Israel. I look forward to > meeting > > > you in October. > > > > > > Best regards, > > > Lori > > > mother of 1 (bilateral atresia mictrotia) and 4 > ( " perfect " > > > ears) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 > Hi , My daughter Abby has bilateral microtia, and physical > impairments due to a brain malformation. It is called HPE or Lobar > Holoprosencephaly. It is mild, but as far as mild goes, she is > physically delayed. She will be 2 years old soon, she does not speak > to communicate, although she is vocal. We do some basic signing with > her, but are looking into communication boards for her. Abby is > involved in an early on program, it helps infants and toddlers up to > age 3. Then places children in the appropriate class setting for > learning. She is in PT and OT and speech therapies. > I am glad you found this group! Everyone is great! > > Amy Colletti Hello Amy, You have no idea how happy and excited I am to have found this group. Have felt so " alone " for so long ! The internet is a wonderful tool for bringing people together. Thanks for sharing Abby's story. It's great you are signing with her. Early on , before we know the extent of 's hearing ,we too began to sign with him. It made it less frustrating for him. Some parents, for some reason,chose not to sign to their child. It should be done for the non-hearing impaired as well. Looking forward to ongoing communications !!! Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2003 Report Share Posted March 16, 2003 Dear Patty and Dave, Welcome to the group and congratulations on the birth of your daughter. My daughter Lena is almost 4 months old and also has right stage 3 atresia/microtia. Although the specialists and tests continue, Lena is doing very well and my husband and I are enjoying her like we never imagined we could. I'm writing to let you know that although we live in FL, we're scheduled to see Dr. Eavey next month in Boston. Dr. Eavey does do the surgery (someone may have already told you all of this since I'm just now getting around to e-mail that is over a month old...sorry). He's with the MA Ear and Eye Infimary and is a part of the team that grew the ear on the mouse's back. I've spoken to him on the phone and he has not only a familiarity but a passion for atresia/microtia. We haven't decided whether he will definitely be the one who performs Lena's surgery in 6 years, but since we have family in the Boston area and he has kindly agreed to see Lena even though she is so young, we'll be meeting with him in April. I will certainly let the group know how our appointment goes. More than anything else, I'm looking for someone who is familiar atresia/microtia to look at Lena and tell us what is in store. The blank stares I've gotten from so many doctors in this area is not helping me to cope (although I'm doing much better than when she was a few weeks old). I must say that the only comfort and the only answers I have gotten have been from this group. Again, welcome. I hope we'll be talking more since our daughters are not very far apart in age. Traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 > Dear Patty and Dave, > Welcome to the group and congratulations on the birth of your daughter. My > daughter Lena is almost 4 months old and also has right stage 3 > atresia/microtia. Although the specialists and tests continue, Lena is doing > very well and my husband and I are enjoying her like we never imagined we > could. > I'm writing to let you know that although we live in FL, we're scheduled to > see Dr. Eavey next month in Boston. Dr. Eavey does do the surgery (someone > may have already told you all of this since I'm just now getting around to > e-mail that is over a month old...sorry). He's with the MA Ear and Eye > Infimary and is a part of the team that grew the ear on the mouse's back. > I've spoken to him on the phone and he has not only a familiarity but a > passion for atresia/microtia. We haven't decided whether he will definitely > be the one who performs Lena's surgery in 6 years, but since we have family > in the Boston area and he has kindly agreed to see Lena even though she is so > young, we'll be meeting with him in April. I will certainly let the group > know how our appointment goes. More than anything else, I'm looking for > someone who is familiar atresia/microtia to look at Lena and tell us what is > in store. The blank stares I've gotten from so many doctors in this area is > not helping me to cope (although I'm doing much better than when she was a > few weeks old). I must say that the only comfort and the only answers I have > gotten have been from this group. > > Again, welcome. I hope we'll be talking more since our daughters are not > very far apart in age. > > Traci Traci Patty and I will be looking forward to talking with you. Sincerely Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 > Hi CHERYL YES, YOU A RIGHT A WAS SO LUCKY TO MEET YOU AND YOUR EAR DID LOOK LIKE A REAL ONE IT WAS VERY NICE TO MEET YOU AND YOUR FATHER AND ALSO GOOD TO KNOW HOW IT HAD GONE WITH YOU TO HAVE ONLY HEARING ON ONE EAR AND GOING TO SCHOOL. I AGREE THAT DR.MULLIKEN DID A VERY GOOD JOP ON YOUR EAR BUT HE WAS I WAS NOT HAPPY ABOUT HIS MANNER AND WHAT HE DID MAKE IT LIKE EASY TO REMOVE THE SKIN TAGS BECAUSE WITH THE SSKIN TAGS IS ALSO A EXTRA EAR CANAL WHICH WAS SEEN WITH THE CT-SCAN BUT I WAS LAUGH APUGT IT WHEN A TOLD IT A I AM CONSERN ABOUT THE NERVE THAT LYES IN HER FACE. THE DID REMOVER HER TONSIL AND WE WILL BE BACK TO BOSTON NEXT SUMMER. YOU TAKE CARE YOU ARE A VERY BEAUTIFULL GIRL AND AGAIN I AM PLEASED TO HAVE MEET YOU. SIGGA FROM ICELAND > I read the email dated Mar. 17, asking about doctors in Boston. > Maybe I could recommend one. My surgeon is Dr. Mulliken at > Children's Hospital-Boston. He's really really good; he is a > craniofacial surgeon, and he does good ears, but works more on jaws and > cleft palates. Hope this helps in some way, shape or form. > By the way, I think I met you, Sigga (did I spell your name > right?) in Dr. Mulliken's office in February. I distinctly > remember looking at a little girl from Iceland who had something > wrong with her jaw, a slightly malformed ear, and I did notice a > skin tag. Was it your daughter? Anyway, I think I showed you my ear. > Just thought I'd mention it b/c it seems like a coincidence. > > Cheryl > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Welcome, You are in the right place -- it has help us tremendously. It is hard not to worry about your child and why this happened. I sure did alot of worrying for the first year of our son's life. Now at age 5, he is a happy, smart and normal boy. We are looking at surgery for him in about 3 years. You will find a wealth of information here. Try not to worry just enjoy him. Carol mom of Austin, unilateral Microtia/Atresia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 I wanted to say hello to everyone! I am from the suburbs of Akron, OH about 1 hour south of Cleveland Ohio. I am hoping to pass any information I receive along to everyone and hope to learn alot more. My son is 3 1/2 yrs old diagnosed at 18 months with Autism Spectrum Disorder, PICA, Sensory Integration Disorder, and a major speech delay. He spoke 5 words at 18 months but with alot of speech and ot therapy he is up to 600 words and going. He is now medicated for high anxiety which seems to help with his speech. We are so proud of him and everyone who worked and works with him. He is in public preschool in a developmental class with 2 teachers and 2 teacher aides with 8 children. We are very fortunate. So this seems like a miracle everyday considering where we started at 5 words. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Welcome ! How did you learn about EDM? > I wanted to say hello to everyone! I am from the suburbs of Akron, > OH about 1 hour south of Cleveland Ohio. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Welcome Dennis! I am TRULY grateful you are here today! How old are you? There are a few folks on this list who have mentioned they have had heart trouble in the past, but I'll bet there are plenty more who are 'lurkers'. I am 43 years old and have been on insulin since I was 17. Even though I'm 'young-ish', I'm a prime candidate for heart problems. The Lord has blessed me with a long life, living with diabetes. I did have a scare a few days before Thanksgiving last fall. I had a lot of pressure under my breast bone (sternum) and had trouble swallowing. I called my doc's nurse who said to get to the ER pronto. As it turns out, it was " just " an esophageal spasm. But, long-time diabetics often have silent heart attacks and she said a heart attack needed to be ruled out. I drove myself to the minor emergency center and within minutes, I was stripped near naked, had EKG leads all over me, a Nitro under my tongue and 2 IV's. They even called an ambulance for me! Needless to say, I was scared to death! After several hours in the hospital, I was released. What an ordeal! I imagine your life changing event was similar, but with a trip to the cardiac cath lab too. The SBD is a way of life, not just a diet to lose weight. Weight loss is an effect of the good healthy eating and exercising you'll be doing. The main focus is to get our bodies healthy again. Take some time to look through the files we have online. There is a lot of good info there. You're more than welcome to ask any and all questions and we'll help you as much as possible. We do ask you to get a copy of the book and read it thoroughly. It's very informative and a quick read. Good luck to you! Donna Moderator > > Hi Everyone, > > My name is Dennis and I joined the group today. So I wanted to drop a note and say hi. Last weekend was a life changer for me, on Saturday night I had a heart attack. Just before I was leased from hospital, I was given information on the new stint that was placed in my heart, suggestions of a follow up appointment with a local cardiologist; then the doctor said I should get friendly with the South Beach Diet. I would welcome all comments on how the diet has worked for you and suggestions from other who are in or have been in recovery from a heart attack. > > Peace and Joy, > Dennis > > Quote Link to comment Share on other sites More sharing options...
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