Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 You could see if insurance would cover it? Amy Lynn mother to 1-25-98 and 2-10-00 Want great toys? Non-violent, educational, fun! check out www.discoverytoysinc.com, or e-mail me privately for a catalog > i would love to, i just don't have the money for it now the only reason > i got the pump is b/c it was a gift from someone. > > i am basically just trying to do it with him nursing at night until he gets > frustrated there isn't that much there (he eats over 40 oz a day now) and > pump the rest of the time. > > jenn j > > Jenn J--welcome--I would suggest you get a supplemental nursing system--a > tube that you tape to your breast so that any pumped milk or abm supplement > you give happens at your breast and Dorian gets used to nursing for his > food. Plus you get the additional stimulation for increasing your milk > supply. Good luck, Amy Lynn > > Amy Lynn > mother to 1-25-98 and 2-10-00 > Want great toys? Non-violent, educational, fun! check out > www.discoverytoysinc.com, or e-mail me privately for a catalog > > > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > > > > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 i am very much so uninsured right now... sadly, apparently my covereage was cancelled aug 31, so my hosp bills from the delivery arent even covered still trying to work that out, but... thankyou tho jenn Re: introduction You could see if insurance would cover it? Amy Lynn mother to 1-25-98 and 2-10-00 Want great toys? Non-violent, educational, fun! check out www.discoverytoysinc.com, or e-mail me privately for a catalog > i would love to, i just don't have the money for it now the only reason > i got the pump is b/c it was a gift from someone. > > i am basically just trying to do it with him nursing at night until he gets > frustrated there isn't that much there (he eats over 40 oz a day now) and > pump the rest of the time. > > jenn j > > Jenn J--welcome--I would suggest you get a supplemental nursing system--a > tube that you tape to your breast so that any pumped milk or abm supplement > you give happens at your breast and Dorian gets used to nursing for his > food. Plus you get the additional stimulation for increasing your milk > supply. Good luck, Amy Lynn > > Amy Lynn > mother to 1-25-98 and 2-10-00 > Want great toys? Non-violent, educational, fun! check out > www.discoverytoysinc.com, or e-mail me privately for a catalog > > > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > > > > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > > Give the Gift of Life Breastfeed! http://www.lactivist.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2000 Report Share Posted December 3, 2000 , Welcome to the list. I am Wendi (listmom) and sahm to two. Kaija is almost 9 and Zaid (my nursling) is three. Glad to have you here. 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 Introduction Hello ladies! My name is Gaunt, and I found your list when a woman on my due date list posted the url. I'm 22, and breastfeeding my 22 month old son, Jake. I'm also 4 months pregnant, and hope to tandem nurse both kids. I live in central Texas, near Austin, with my mother and my aunt, on 37 acres with 4 horses, 3 cats, 2 dogs, and a flock of chickens. We are dirt poor . My boyfriend (and father of my kids), Stone, lives and goes to college in a nearby town. He's 22 also. I'm a big believer in attachment parenting, and extended nursing (duh ), and cosleeping. Um, what else?.... I hope to someday be a doula or a lactation consultant. I'm seeing a group of midwives for my prenatal care, and will be delivering in one of the best hospitals in the state, because my insurance will only pay for a hospital birth. Ok, so that's me... I'm glad to have found ya'll! Give the Gift of Life Breastfeed! http://www.lactivist.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 Welcome! I am Dawn, single divorced, LOVING mum to 3 little ones. I had my first period with Ethan was 10 weeks old. With my older 2, it was at 7 weeks both times. Exclusively nursing too! What is 's birthday? Ethan is 14 weeks old, too. *************************** Dawn - Loving Mum to: Ethan Adnan (35-weeker, 8-25-00, VSD - heart defect, needs corrective surgery - 3 months, 10 lbs 2oz, 23 in) Elijah Iman (7-2-99, developmentally delayed) and Ibrahim Jerry (9-10-97) On Thu, 07 Dec 2000 02:55:50 -0000 LHOMRIGHAUSEN@... writes: > Hello everyone. I am new to the group and would like to introduce > myself. My name is Lesli and I have a 14 week old daughter named > . We are having a very positive experience breastfeeding, > although we had some difficulties at first. I have a > question...although I am not having regular periods, I am having > regular times (when I should be having a period) that my breasts are > > extremly tender. Is anyone else experiencing this? I had a period > for a day in October and nothing since... > > > -------------------------- eGroups Sponsor > > Give the Gift of Life Breastfeed! > http://www.lactivist.com > *************************** 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) ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! 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 January 30, 2001 Report Share Posted January 30, 2001 , Glad to have you here. Welcome. It is great that you are wanting to help women in your area. Hope you find some good info here. I always love fresh perspectives, so am glad to have a foreigner on board! LOL Wendi introduction Hi everyone. I have just subscribed to this list and given the apparent influx of new (and rather strange!) people with the yahoo merger I thought I better introduce myself quickly before I got thrown out! My name is and I have 2 daughters - Caitlin 4 1/2 and Mia 18 months. Both were breastfed until around 15 months when they both gave up on their own :-( The reason that I have joined this list is that I am training to be a breastfeeding counsellor in England - I hope it is ok for me to listen in and learn from you and hopefully I may be able to contribute sometimes as well! Must admit - when I joined up I didn't realise that this was an American list - hope you don't mind a foreigner on board! I find some things that you do a bit different to over here but, some things are sadly the same - such as the formula companies doing their best to push their products onto everyone. Think thats about it for now - looking forward to hearing and learning more! 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 9, 2002 Report Share Posted March 9, 2002 << I just wanted to say that my son had an ABR test when he was 8 weeks old also. I scheduled the test around the time he would be taking a feeding and a nap. I held him on my lap gave him a bottle and a couple of minutes he was sound asleep-- no meds at all. The test is very short and not really bothersome, its just that they need to hold still. >> Welcome Christie and Congratulations on your new baby boy! I joined the group about the same time when Brayden was about 3-4 weeks old ( he has unilateral Microtia Atresia). I know it can be a very overwhelming and confusing time. I dealt with it by finding out as much as I could (mostly from this group). I feel so much more comfortable with everything now. Brayden is 16 months old. We had Brayden's ABR at about 4 weeks old and they did it during regular sleep he did not need to be sedated. It should be easy to do at this age without sedatives because they sleep most of the time. Yes, you sound like you are on the right track with your drs. This is a great group so ask away if you have questions. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Christie, Welcome. I found that when Lily was born the worst part about her microtia was the doctors. I kept thinking, " she's not a science project. She's our baby. " So, I did the minimum of testing. They did the initial tests on her heart, kidneys and hearing. She does have a murmur but, it's almost closed. I see the cardiologist once a year and it is totally un-invasive. She has one kidney which functions properly. The urologist wanted to put her on a daily antibiotic as a precaution against urinary tract infections. I refused. I felt that this would break down her overall health by killing her good bacteria. If she got an infection, I would consider it. But, a urinary tract infection is not a kidney infection. She has been fine. He also wanted to test her yearly for reflux (which may lead to urinary tract infection). I had her tested once (the test itself could lead to a urinary tract infection)! She does have reflux. It can be fixed surgically prior to puberty. I will have her tested again as she gets older to see if it has fixed itself which the urologist said it will probably do. Again, if she gets a urinary tract infection I'll consider testing her earlier and possibly having the surgery. As I said, so far she's been fine. As far as the hearing tests go...for the early test I just nursed her and she slept. I read a book. I did not do the next test (6 or 8 months) because they wanted to sedate her and they were clear that even if she needed hearing aids or intervention, it could not start until later. They also said that children with proper hearing in one ear should be able to learn to communicate without aid. I skipped that test and had her tested at 2 1/2 when she could talk to them. Again, I felt that putting her through that procedure would compromise her constitution and overall health. The doctors told me that she would need to have tubes put in her ears if she got more than 2 ear infections in her first year. So, I nursed her for 2 years. I went to a naturopathic physician who advised me to omit dairy from my diet while I nursed and gave me a list of foods to hold off on introducing to Lily to ward off allergies and therefore ear infections. I also took imune boosting omega 3 supplements while I nursed her to help build her immunity. And I extended her immunization schedule (after consulting my pediatrician) so that she didn't have to fight so much all at once and at such a young age. I guess what I'm long winded in saying is we tried to give her what a newborn needs. And unless we felt it was absolutely necessary we refused testing. We felt she needed love and nutrition and prayer. The doctors had me convinced that my sweet baby was going to be in and out of hospitals and surgeries. That scared me. She is so healthy. I never would have believed it during those first days. Just remember to pay attention to your instincts. It's hard with all the scientific information coming at you. But, your instincts will let you know what needs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 << I also took imune boosting omega 3 supplements while I nursed her to help build her immunity. >> can you tell me more about these? Would a doctor need to prescribe these? Would it help to take them at this late stage (Brayden is 16 months). I just take a regular pre natal vitamin now. I was also advised by the ENT to nurse Brayden as long as possible. He felt this would help with ear infections. This wasn't new thinking to me as I nursed my older 2 till 2.5 with this same idea in mind. Thanks Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Steve, Thanks for all of the information. You have a GREAT website. Do you mind if I put a link on my website to it? Christie -----Original Message-----From: Steve Kazemir Sent: Friday, March 08, 2002 5:48 PMTo: AtresiaMicrotia Subject: RE: Introduction I guess I wanted to officially come out of "lurkdom" and let you all know I'm here...and a little overwhelmed! What a great wealth of knowledge you all are. Congradulations on your "comming out" My name is Christie and I have a 4-week-old son, , that has Aural Atresia Microtia. His left ear has a lobe and just looks like the top part of the ear got folded over and grew to his head and his right ear is what I think you all refer to as a "teeny?" ear. We aren't sure yet if he is hearing out of that ear. At the hospital where he was born (a local county hospital) he failed the hearing test, but for the last couple of weeks I've noticed him startling some at loud noises. was similar. When he was born, the Dr. couldn't tell if his ear canals actually went in. Turns out they didn't, they go in a little ways, but then are blocked off. This automatically meant he at least had a moderate hearing loss (~60dB). But we still didn't know if there were other factors and whether there was any heraing at all. We didn't know if could hear, but we noticed too that he would startle to some loud noises. But be careful here, it is hard to tell. We never really knew if it was the loud noise, or the movement that caused the loud noise. We tried the bang on a pot thing and see if we got a reaction etc. But nothing was conclusive. There was one thing I tried that I think convinced me that he could hear a little. I am not sure how to describe it, but I made a loud "kissing" noise right next to his ear. Whenever I did this, he would stop moving, and his bottom lip would start to quiver. Since he wasn't used to hearing sounds, I think he was quite confused at what was happening, and got scared. Of course he was comforted immediately afterward. Again we weren't sure if it was the sound or not, so I did the exact same actions, but with no sound. No reaction. Be careful doing this, if you were to do this with someone with normal hearing, the volume of the sound would be very uncomfortable, and possibly damage their hearing. Try with quieter sounds first. We have been to a pediatric ENT and they will put him under general anesthesia after he's two-months to do an ABR test (I have no idea what that is, except for a hearing test) and possibly a CT scan. We knew had some hearing after he had his ABR (I think when he was 3-4months old). Although they gave him a sedative. I don't think it was the same as a general anesthetic. Basically they gave him an eyedropper full of some orange liquid (I don't remember what it was), and about 15 min later, he was sound asleep. He woke up a few hours later. After he was asleep, they put sticky electrodes in various places on his head, and then tried headphones as well as a bone conductor. They would send out a series of "clicks" and watch the response picked up from the electrodes. From the responses, the technician could tell if the cochlea was receiving the signal and passing it to the brain. This coming Monday his regular pediatrician has scheduled an ultrasound to check his kidneys. Does it sound like we're on the right track for this? Yup. Ears and kidneys develop at the same time in the womb, so they should be checked. Also, there should be a test to double check his heart ( had an ECG). To be honest, I haven't researched this too much yet. I found a couple of websites and read a little, but I got too overwhelmed and started worrying too much about the "what if's." I think I'm ready to start learning everything I can now and I guess I'm coming to all of you for any advice/help you care to offer. Are there any websites out there that would be a good place to start? There is some information on my web site... http://www.pde.com/~kazemir and you will find some other links on the Atresia/Microtia Yahoo Group website http://groups.yahoo.com/group/AtresiaMicrotia/ click on bookmarks. Just from reading some of your emails I am wondering what HFM is and also Treacher ? Also, is Microtia part of this defect, or is Microtia something else (I know that is a silly question, but I've seen this referred to just as Aural Atresia, and then other times Aural Atresia Microtia). There is no such thing as a silly question. The only silly question is the one that isn't asked. I am not an expert on HFM or Treacher , I'll leave these definitions to others on this list. But Microtia and Atresia are often associated with these syndromes. Aural Atresia is the closing of the ear canal. Microtia is the term for an underdeveloped outer ear (Anotia is the complete absence of an outer ear). We had to his one-month appointment today and the pediatrician also noticed that one side of his tongue when he cries comes up more than the other. He wants us ask the ENT about this when we saw him next, but do any of you know if this is an indication of something else wrong? I don't know about this one...Anyone else have experience here? To me this sounds like a fairly minor thing, and could be normal. But I think it is a good idea to ask the ENT. Christie, mommy to Zachary (2 years) and (4 weeks) Good to hear from you Christie!! Keep asking the questions! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Hi beth, Thanks for the warm welcome. You're right, this is such a stressful time but I think I'm holding up pretty well. I'm ready to get out of "limbo land" and know exactly what we are facing with his hearing. Steve's website eased some of my fears as far as hearing aids go. When the Dr. described them to me I was picturing something absolutely horrific and after seeing the pictures realize it won't be as bad as I imagined. I am thankful for and already can't imagine life without him. I know God has a special plan for us and I pray that he gives me the strength to handle what he has in store for us. I also keep reminding myself that there could be so many worse defects than this, and am thankful that so far he is such a strong, healthy boy. Thanks again for all the information and advice, Christie -----Original Message-----From: beth Boucher Sent: Friday, March 08, 2002 9:41 PMTo: AtresiaMicrotia Subject: Re: Introduction Hi Christie! Welcome to the group Our son is 9 yrs. old and has HFM, Right microtia and right atresia. Steve's advice is right on track. Maybe I can share some additional info regarding our experiences with HFM as well. RE: Does it sound like we're on the right track for this? Absolutely! You're checking his hearing and kidneys. These are all areas that grow at the same time in-utero, so it is wise to check them all out. Two other areas you may want to examine are his spinal column and heart. These are non-evasive exams completed by a neurologist and I'm not sure who does the heart exam, you may want to ask your ENT. This helps to rule out any associated syndromes. RE: Are there any websites out there that would be a good place to start? I like like http://www.ccakids.com/ It gives you references for your particular area as well as small - but accurate - definitions for various syndromes. (Click on the, "What is a Craniofacial Syndrome?" link.) They also offer financial assistance to patients who qualify. Like Steve said, there are a lot of links you can get off the info list of this group. Do you know how to find them? RE: Just from reading some of your emails I am wondering what HFM is and also Treacher ? This is the info I got from the site mentioned above: Hemifacial Microsomia/Goldenhar Syndrome is a condition in which the lower half of one side of the face does not grow normally. The most obvious sign of this condition is a partially formed ear or total absence of an ear. In goldenhar syndrome benign growths of the eye (epibulbar dermoids) are present. Children with Goldenhar syndrome may also have neck problems, which are most commonly caused by a fusion or bony bridges between the bones of the neck. Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found. Artresia is the closing or absence of an ear canal in the middle ear.Microtia and artresia can occur alone or together. They can also be associated with hemifacial microsomia. If both ears are affected Treacher Syndrome may be involved. Treacher is a condition in which the cheek-bones and jawbones are underdeveloped. Children with this condition have very small or partially absent cheek bones and notches in or stretching of the lower eyelids. The ears are frequently abnormal and part ofthe outer ear is usually absent. Hearing loss is also associated with this syndrome. RE: I haven't researched this too much yet. I found a couple of websites and read a little, but I got too overwhelmed and started worrying too much about the "what if's." This is a really stressful and vulnerable time for you. Take it slow and pace yourself. This is all really new and there's a lot of info out there. Best advice I can give to you is to love that lil' guy, pray for him and be very thankful that he is yours. Also fill yourself with as much information as you can (it really helps to ease the "what if's"), and really begin to train yourself to "listen" to your maternal instinct. We are all here to support and help one another. You're not alone! Hugs to Zachary and Love, beth Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Thanks for the info. Jean. When they call to set a definite date I think I'll ask them about this. General anesthesia absolutely terrifies me with him being so small. Christie -----Original Message-----From: Jean11375@... Sent: Saturday, March 09, 2002 10:55 AMTo: AtresiaMicrotia Subject: Re: Introduction We have been to a pediatric ENT and they will put him under general anesthesia after he's two-months to do an ABR test (I have no idea what that is, except for a hearing test) and possibly a CT scan. Hi and welcome!I just wanted to say that my son had an ABR test when he was 8 weeks old also. I scheduled the test around the time he would be taking a feeding and a nap. I held him on my lap gave him a bottle and a couple of minutes he was sound asleep-- no meds at all. The test is very short and not really bothersome, its just that they need to hold still. (Of course if they feel the CT scan is necessary now, than he would need sedation anyway). Jean ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Thanks . also had a couple of skin tags in front of his right ear but a surgeon removed them the day after he was born. I'm getting anxious to find out some definites about his hearing so we can get the " ball rolling. " I'm so glad I found this group not only for all of the information, but it seems that everyone is so supportive. I know I'll be needing that. Christie Re: Introduction Hi Christie, Welcome to the group! Thought I'd just let you know my 8 month old son Conor has unilateral microtia and atresia to his right ear. It sounds a lot like ' ear. Conor has a lobe at the bottom and what looks like the start of the curve at the top and the middle part of his ear just looks like it is folded over and stuck down. He has no visible ear canal. Also he has a small, what I think is, a skin tag in front of his ear - it's just like a small bump (like a big spot of skin) that sticks out. Conor has had hearing tests and he has hearing loss in his microtic ear but normal in his other ear. Like you, in the early days before the hearing tests I found it difficult to know if Conor had normal hearing as he seemed to startle at some sounds but not others - eg the phone would wake him up but you could make a loud bang beside him and he would not startle. It's difficult to know with young babies I think. she said it's too specialised for her and to ask the paediatrician. I'm finding it helps to know your stuff before you go in for any medical appointments and you'll find this group a wealth of information. I know it's sometimes hard to read about the 'what if's' but it really helps to be informed and aware of these things and if your child does not have them, it makes you aware that there is always somebody worse off. Before I found this group and found out what his ear condition is called (I found out by searching ear defect on the internet that his condition is called micorita & atresia!!) that because I knew so little about it that when the doctors asked had we any questions we just looked blankly at them because we did not know enough about it to asked any informed questions. Now I know more about microtia & atresia I have lots of questions lined up to ask at Conors next appointment! At our last visit to the ENT I mentioned the medpor synthetic implant that is used in USA (we live in Ireland) and our ENT did not seem to know anything about it and went on to talk about prosthetic ears as the only other option to rib cartlidge method. Therefore the next time I go I will be armed with printouts from websites about this method! Also, Conor has never had a heart check and without this group I would never know that he should have done, so that's on my list for the next visit to the paediatrician - I asked my GP about it and Take Care Leigh AtresiaMicrotia wrote: < < ------=_NextPart_000_0092_01C1C6BA.F9D6B8A0 < Content-Type: text/plain; < charset= " iso-8859-1 " < Content-Transfer-Encoding: 7bit < < Hi Everyone! < < I guess I wanted to officially come out of " lurkdom " and let you all know < I'm here...and a little overwhelmed! What a great wealth of knowledge you < all are. < < My name is Christie and I have a 4-week-old son, , that has Aural < Atresia Microtia. His left ear has a lobe and just looks like the top part < of the ear got folded over and grew to his head and his right ear is what I < think you all refer to as a " teeny? " ear. We aren't sure yet if he is < hearing out of that ear. At the hospital where he was born (a local county < hospital) he failed the hearing test, but for the last couple of weeks I've < noticed him startling some at loud noises. We have been to a pediatric ENT < and they will put him under general anesthesia after he's two-months to do < an ABR test (I have no idea what that is, except for a hearing test) and < possibly a CT scan. This coming Monday his regular pediatrician has < scheduled an ultrasound to check his kidneys. Does it sound like we're on < the right track for this? < < To be honest, I haven't researched this too much yet. I found a couple of < websites and read a little, but I got too overwhelmed and started worrying < too much about the " what if's. " I think I'm ready to start learning < everything I can now and I guess I'm coming to all of you for any < advice/help you care to offer. Are there any websites out there that would < be a good place to start? Just from reading some of your emails I am < wondering what HFM is and also Treacher ? Also, is Microtia part of < this defect, or is Microtia something else (I know that is a silly question, < but I've seen this referred to just as Aural Atresia, and then other times < Aural Atresia Microtia). < < We had to his one-month appointment today and the pediatrician also < noticed that one side of his tongue when he cries comes up more than the < other. He wants us ask the ENT about this when we saw him next, but do any < of you know if this is an indication of something else wrong? < < Oh, the pediatric ENT we are seeing is at the Children's Hospital in < Columbus, OH, so if any of you know anything about them, I'd love to hear < about it! < < Thank you, < < Christie, mommy to Zachary (2 years) and (4 weeks) < < ------=_NextPart_000_0092_01C1C6BA.F9D6B8A0 < Content-Type: text/html; charset=US-ASCII < Content-Transfer-Encoding: 7bit < < < < < < < < < < < Hi < Everyone! <  < I < guess I wanted to officially come out of " lurkdom " and let you all know I'm < here...and a little overwhelmed! What a great wealth of knowledge you all < are. <  < My < name is Christie and I have a 4-week-old son, , that has Aural Atresia < Microtia. His left ear has a lobe and just looks like the top part of < the ear got folded over and grew to his head and his right ear is what I < think you all refer to as a " teeny? " ear. We aren't sure yet if he is < hearing out of that ear. At the hospital where he was born (a local county < hospital) he failed the hearing test, but for the last couple of weeks I've < noticed him startling some at loud noises. We have been to a pediatric ENT < and they will put him under general anesthesia after he's two-months to do an < ABR test (I have no idea what that is, except for a hearing test) and possibly a < CT scan. This coming Monday his regular pediatrician has scheduled an < ultrasound to check his kidneys. Does it sound like we're on the right < track for this? <  < To be < honest, I haven't researched this too much yet. I found a couple of < websites and read a little, but I got too overwhelmed and started worrying too < much about the " what if's. "  I think I'm ready to start learning everything < I can now and I guess I'm coming to all of you for any advice/help you care to < offer. Are there any websites out there that would be a good place to < start? Just from reading some of your emails I am wondering what HFM is < and also Treacher ? Also, is Microtia part of this defect, or is < Microtia something else (I know that is a silly question, but I've seen this < referred to just as Aural Atresia, and then other times Aural Atresia < Microtia). <  < We had < to his one-month appointment today and the pediatrician also noticed < that one side of his tongue when he cries comes up more than the other. He < wants us ask the ENT about this when we saw him next, but do any of you < know if this is an indication of something else wrong? <  < Oh, < the pediatric ENT we are seeing is at the Children's Hospital in Columbus, OH, < so if any of you know anything about them, I'd love to hear about < it! <  < Thank < you, <  < Christie, mommy to Zachary (2 years) and (4 < weeks) < < < < < < < Yahoo! 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Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Thanks Autumn. I am definitely going to check on not getting him sedated, or at least nothing as major as the general anesthesia. I think I'm handling the possibility of him not hearing out of his right ear better than the thought of them putting him under anesthesia. I'm so glad I found such a supportive group. Christie -----Original Message-----From: FACTBERTE@... Sent: Saturday, March 09, 2002 5:13 PMTo: AtresiaMicrotia Subject: Re: Introduction<< I just wanted to say that my son had an ABR test when he was 8 weeks old also. I scheduled the test around the time he would be taking a feeding and a nap. I held him on my lap gave him a bottle and a couple of minutes he was sound asleep-- no meds at all. The test is very short and not really bothersome, its just that they need to hold still. >>Welcome Christie and Congratulations on your new baby boy! I joined the group about the same time when Brayden was about 3-4 weeks old ( he has unilateral Microtia Atresia). I know it can be a very overwhelming and confusing time. I dealt with it by finding out as much as I could (mostly from this group). I feel so much more comfortable with everything now. Brayden is 16 months old. We had Brayden's ABR at about 4 weeks old and they did it during regular sleep he did not need to be sedated. It should be easy to do at this age without sedatives because they sleep most of the time. Yes, you sound like you are on the right track with your drs. This is a great group so ask away if you have questions. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 Hi christie, I haven't said much in this group because I am also a part of the goldenhar network.Ill try to help with some of your questions.First to address his hearing , there are so many levels of hearing it is really hard to tell just by loud noises if he has losses or not.2nd an abr studies brain waves when they introduce clicks in the good ear.It sounds like your pretty well on your way but i would consider a craniofacial clinic.The ent should be able to refer you to someone he or she works with.HFM is hemiofacial microsomia.It refers to the face. Usually most children are affected on just one side , my Corey is bilaterally affected.He has a small flat jaw bone and one ear that is completly closed and the other one is very narrow. It is very hard for even the ENT's to see coreys left ear drum.I would also try to get an offical diagnoses if you don't already have one.Hope I could Help. Tosha Mother of Corey W/GS Introduction Hi Everyone! I guess I wanted to officially come out of "lurkdom" and let you all know I'm here...and a little overwhelmed! What a great wealth of knowledge you all are. My name is Christie and I have a 4-week-old son, , that has Aural Atresia Microtia. His left ear has a lobe and just looks like the top part of the ear got folded over and grew to his head and his right ear is what I think you all refer to as a "teeny?" ear. We aren't sure yet if he is hearing out of that ear. At the hospital where he was born (a local county hospital) he failed the hearing test, but for the last couple of weeks I've noticed him startling some at loud noises. We have been to a pediatric ENT and they will put him under general anesthesia after he's two-months to do an ABR test (I have no idea what that is, except for a hearing test) and possibly a CT scan. This coming Monday his regular pediatrician has scheduled an ultrasound to check his kidneys. Does it sound like we're on the right track for this? To be honest, I haven't researched this too much yet. I found a couple of websites and read a little, but I got too overwhelmed and started worrying too much about the "what if's." I think I'm ready to start learning everything I can now and I guess I'm coming to all of you for any advice/help you care to offer. Are there any websites out there that would be a good place to start? Just from reading some of your emails I am wondering what HFM is and also Treacher ? Also, is Microtia part of this defect, or is Microtia something else (I know that is a silly question, but I've seen this referred to just as Aural Atresia, and then other times Aural Atresia Microtia). We had to his one-month appointment today and the pediatrician also noticed that one side of his tongue when he cries comes up more than the other. He wants us ask the ENT about this when we saw him next, but do any of you know if this is an indication of something else wrong? Oh, the pediatric ENT we are seeing is at the Children's Hospital in Columbus, OH, so if any of you know anything about them, I'd love to hear about it! Thank you, Christie, mommy to Zachary (2 years) and (4 weeks) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 I'm also interested in learning more about this...Gabi couldn't nurse (we think it was due to improperly developed, or immature sucking muscles). Is there a mild form that could be given to the entire family (little ones included)? Re: Introduction << I also took imune boosting omega 3 supplements while I nursed her to help build her immunity. >> can you tell me more about these? Would a doctor need to prescribe these? Would it help to take them at this late stage (Brayden is 16 months). I just take a regular pre natal vitamin now. I was also advised by the ENT to nurse Brayden as long as possible. He felt this would help with ear infections. This wasn't new thinking to me as I nursed my older 2 till 2.5 with this same idea in mind.Thanks Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 << I hear from friend of mine that the new Siemans spiral scanner will now do the same scan in less than 3 minutes. >> That is what they used with Brayden the new Siemans and it took 3 minutes at the most I was amazed. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 HELLO... an ABR was done on my daughter when she was about ten days old. No medication was given, as it is totaly uninvasive! She lay in her little 'carry-chair' whilst the entire procedure took place. Little abrasive pads were placed on her head and forehead - then they monitor whether the auditory nerve responds to different levels of sound waves. I must admit that I was in tears, as I had never dealt with anything like this before, and had no idea what the outcome would be. My husband and I sat in complete silence, just staring at our little baby, wondering if she would be able to hear or not, as they test both "ears" - not only the Microtia/Atresia side! I now realise that I was just scared for her - but I had never heard or seen anyone else (and still have not!!!) with these precous little ears! They did a CT Scan when she was a few hours old - we were not informed about this! We think that the Doctors panicked, because all of those present at the birth, had never come across Microtia before! (We were also left in the dark about the facts of her ears - no medical term was given, etc! .....jusr "Lucky that she has a lot of hair, you can hide it all under her hair!!!) Well, thank goodness for the Internet - and even more thanks to Steve, because I now know exactly what these little 'deformed ears' are called, and can now understand what we are dealing with!!! When one is left totally in the dark, with a newborn baby - my goodness, of course we all panic !! I must also add, that I can now understand when I read that those having to deal with the surgeries have commented that the little ears will be missed....because I just love her little "noobie" (where the name comes from, I have no idea!!) - and I know that if or when her ear is reconstructed, I would really miss that very special part of her! It actually makes me quite heartsore just thinking about it right now - and she is only just over a year old!!! Another thing I must ask........ My seven year old son has been asking what will happen at kindergarden when the children sing, "head, shoulders, knees and toes" etc!? He is worried about the "ear part" !!! And also what happens when children learn about numbers and body parts! The teacher always seems to ask..."how many hands have you got? - - how many eyes have we got?? -- - how many ears have we got???" etc! He says that Ella (his sister) will be very confused!!! Rather sweet!!! Have any of you had questions like these? Or any related things at a young age?? - Just curious!! Hope you don't mind the long letter - (SA) -----Original Message-----From: Jean11375@... Sent: 09 March 2002 05:55To: AtresiaMicrotia Subject: Re: Introduction We have been to a pediatric ENT and they will put him under general anesthesia after he's two-months to do an ABR test (I have no idea what that is, except for a hearing test) and possibly a CT scan. Hi and welcome!I just wanted to say that my son had an ABR test when he was 8 weeks old also. I scheduled the test around the time he would be taking a feeding and a nap. I held him on my lap gave him a bottle and a couple of minutes he was sound asleep-- no meds at all. The test is very short and not really bothersome, its just that they need to hold still. (Of course if they feel the CT scan is necessary now, than he would need sedation anyway). Jean ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 I must admit that I was in tears, as I had never dealt with anything like this before, and had no idea what the outcome would be. My husband and I sat in complete silence, just staring at our little baby, wondering if she would be able to hear or not, as they test both "ears" - not only the Microtia/Atresia side! I now realise that I was just scared for her - but I had never heard or seen anyone else (and still have not!!!) with these precous little ears! They did a CT Scan when she was a few hours old - we were not informed about this! We think that the Doctors panicked, because all of those present at the birth, had never come across Microtia before! (We were also left in the dark about the facts of her ears - no medical term was given, etc! ..... kelly knowledge is power. i've helped see 500 kids through reconstructive surgery in the last 20 years. you are not alone. yours IS precious. (so is mine!) so are ALL of them. God creates the solutions even before He sends us the challenges. it makes life sooo much more interesting and rewarding! youre in great hands with this group! were all here for each other and growing! (even IF we disagree!) jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 << " head, shoulders, knees and toes " etc!? He is worried about the " ear part " !!! >> That has already happen with us at story time. They sing " I have to eyes to see I have to ears to hear " . Of course at this stage Brayden doesn't know any different. I felt a little awkward like people were looking at my reaction. I don't know how this would/will play out when they are more aware. Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Jack, well said .... our situation certainly plays a part in making our lives more meaningful and rewarding. We get to test ourselves on what we are really made up of. For others who may not know me, my son ( 3 years 10 months) has unilateral microtia and slight hemifacial microsomia. We found out about the HFM when we took him to a Craniofacial Surgeon at age 3. The HFM is not obvious to us, parents. The Craniofacial Surgeon during our group meet showed us pictures of children who have had ear reconstruction by age 7 and developed unevenly positioned ears and in need of further corrections in their late teens. Do rule out HFM among the many other related issues connected to ear canal atresia/ microtia before considering the physical ear reconstruction. Chelvi Malaysia knowledge is power. i've helped see 500 kids through reconstructive surgery in the last 20 years. you are not alone. yours IS precious. (so is mine!) so are ALL of them. God creates the solutions even before He sends us the challenges. it makes life sooo much more interesting and rewarding! youre in great hands with this group! were all here for each other and growing! (even IF we disagree!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Thanks! We are so new to all of this! We are just now finding out about the options for prosthetic ears versus surgically reconstructed ones, etc. We do have the name of a surgeon who does reconstructions and plan to give him a call and go see him soon. I am reading all the posts with great interest! I had no idea there were so many options and so much info. We have a lot to figure out! Pamela --- beth Boucher Heyboucher@...> wrote: > > Hi Pamela and Rich, > > Welcome to the group! Whew, you make me tired just > talking about having two > 3-year olds - bless you! > > I don't have any experience with the BAHA's, except > that I think they are > very beneficial. You may want to consult with some > reconstruction surgeons > to discuss any drawbacks a BAHA may cause to future > reconstructions. > > Love, beth > > >From: Pamela and Rich Stockwell > pandrstockwell@...> > >Reply-To: AtresiaMicrotia > >To: AtresiaMicrotia > >Subject: Introduction > >Date: Sat, 8 Jun 2002 13:43:49 -0700 (PDT) > > > >Hi! Another new member here! > > > >We are Pamela and Rich Stockwell. On April 2, we > >adopted a little boy from China who will be three > on > >June 25. Connor has bilateral atresia and microtia. > We > >just found out he is NOT a good candidate for the > >surgery to open up his ear canals, so we are > looking > >into BAHAs. Does anyone on the list have any > >experience with these? I plan to look at the > archives > >later, but with two preschoolers (we have a > daughter > >who just turned 3 last week!) I have very limited > >computer time! > > > >I look forward to being a part of this list and > >learning from other parents who have children with > >this condition! > > > >Thanks, > > > >Pamela and Rich > > > >__________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 > Hi Pamela and Rich, > Congratualtions on your new son! > My daughter is 5 and got a BAHA last year. Please feel free to > ask any questions about BAHAs here or e-mail me privately. > ('s Mom) , We are scheduled for the BAHA surgery Aug 19 with our Son (7 years old). Now that you have gone through the surgeries, and your daughter has had it for a year...what do you think? Have you found it to be an improvement over a BCHA? What about the recovery time? Is the care of the abutment easy? a hassle? Any other comments? (good and/or bad please) Thanks Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 > Hi! Another new member here! Welcome aboard!! > into BAHAs. Does anyone on the list have any > experience with these? I plan to look at the archives > later, but with two preschoolers Pamela and Rich, There are people on this list with direct experience with the BAHA. I am also a member of another Yahoo e-mail list you may be interested in, BAHA_PPL (http://groups.yahoo.com/group/BAHA_PPL). This list is entirely devoted to BAHA's. I know there are a few people on that list who have bilateral BAHA's and think they are great. I suggest you ask questions here, and there. The more info the better, right? Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi and welcome to the group!!! We have a great bunch of losers with lots of support, encouragement and advice to help you along your journey! Maureen Introduction Hello everyone, I'm new to the group and wanted to introduce myself. My name is and I am 35. I have been battling my weight all of my life. I am currently at 550+ but I am working my way down. My short term goal is to get down to 500 and then go from there. I am still looking for a place to get weighed so I can be sure of my exact weight and track my progress. I look forward to getting to know you all and losing this unwanted weight while cahnging my bad eating habits. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hello everyone, I would like to thank all of you for the exceptionally warm welcome and I will definitely check out the recipes on the site. I look forward to getting to know you all and getting my weight and eating habits under cotrol on the way. Sincerely, Quote Link to comment Share on other sites More sharing options...
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