Guest guest Posted April 19, 2003 Report Share Posted April 19, 2003 Hey ...old buddy, old pal, old friend! Nice to see you here as well as on our list. You will be able to help others here as they will help you! Welcome to the grads! Amazing...seems like just yesterday we were praying for you to GET your sugery, and now look a ya! =o) Blessings, Cindy Lou ¸,ø ¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸ A far time ago in a galaxy long, long away.... ¸,ø ¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸ Lost 300+ lbs Gained :::LIFE::: My Home Page: http://www.ptl4wls.com My Graphics List: http://groups.yahoo.com/group/Grafix4Jesus/ My Christian WLS List: http://groups.yahoo.com/group/OSSG-WLSChristian/ " I have heard your prayer, I have seen your tears. Surely..I will heal you. " 2 Kings 20:5 New Member > Hi there -- > > My name is -- I'm from Tulsa, OK. I had the OPEN RNY GASTRIC > BYPASS on March 7, 2002. I have been looking for some post-op > support . . .just like before surgery -- I want to see if it's just > me -- or do I share my issues with others . .LOL > > I started at 552lb - - highest weight was 565lbs . . > > I am donw to 262 now -- down 290lbs since surgery. It's been fast -- > sometimes too fast - but what can I say - -i love my life now. > > I look forward to learning and sharing -- > > > 552 - 262 > down 290lbs > Dr. Hocking -- Gainesville, FL > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2003 Report Share Posted April 19, 2003 Hey ...old buddy, old pal, old friend! Nice to see you here as well as on our list. You will be able to help others here as they will help you! Welcome to the grads! Amazing...seems like just yesterday we were praying for you to GET your sugery, and now look a ya! =o) Blessings, Cindy Lou ¸,ø ¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸ A far time ago in a galaxy long, long away.... ¸,ø ¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸¸,ø¤º°`°º¤ø,¸ Lost 300+ lbs Gained :::LIFE::: My Home Page: http://www.ptl4wls.com My Graphics List: http://groups.yahoo.com/group/Grafix4Jesus/ My Christian WLS List: http://groups.yahoo.com/group/OSSG-WLSChristian/ " I have heard your prayer, I have seen your tears. Surely..I will heal you. " 2 Kings 20:5 New Member > Hi there -- > > My name is -- I'm from Tulsa, OK. I had the OPEN RNY GASTRIC > BYPASS on March 7, 2002. I have been looking for some post-op > support . . .just like before surgery -- I want to see if it's just > me -- or do I share my issues with others . .LOL > > I started at 552lb - - highest weight was 565lbs . . > > I am donw to 262 now -- down 290lbs since surgery. It's been fast -- > sometimes too fast - but what can I say - -i love my life now. > > I look forward to learning and sharing -- > > > 552 - 262 > down 290lbs > Dr. Hocking -- Gainesville, FL > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2003 Report Share Posted April 20, 2003 Hi , I too remember you from what I call the " Cindy Lou " list. :-) I remember your struggle to get approved and so on. Congratulations - you are doing great!!!! Lap RNY Sept 2001 Minus 198.5 pounds 333.5/135 http://www.wworw.com > Hi there -- > > My name is -- I'm from Tulsa, OK. I had the OPEN RNY GASTRIC > BYPASS on March 7, 2002. I have been looking for some post-op > support . . .just like before surgery -- I want to see if it's just > me -- or do I share my issues with others . .LOL > > I started at 552lb - - highest weight was 565lbs . . > > I am donw to 262 now -- down 290lbs since surgery. It's been fast - - > sometimes too fast - but what can I say - -i love my life now. > > I look forward to learning and sharing -- > > > 552 - 262 > down 290lbs > Dr. Hocking -- Gainesville, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2003 Report Share Posted April 20, 2003 Hi , I too remember you from what I call the " Cindy Lou " list. :-) I remember your struggle to get approved and so on. Congratulations - you are doing great!!!! Lap RNY Sept 2001 Minus 198.5 pounds 333.5/135 http://www.wworw.com > Hi there -- > > My name is -- I'm from Tulsa, OK. I had the OPEN RNY GASTRIC > BYPASS on March 7, 2002. I have been looking for some post-op > support . . .just like before surgery -- I want to see if it's just > me -- or do I share my issues with others . .LOL > > I started at 552lb - - highest weight was 565lbs . . > > I am donw to 262 now -- down 290lbs since surgery. It's been fast - - > sometimes too fast - but what can I say - -i love my life now. > > I look forward to learning and sharing -- > > > 552 - 262 > down 290lbs > Dr. Hocking -- Gainesville, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Dear ; I think you will find that your story is similar to many members on the Message Board (MB). I normally don't post as I am an advocate (don't have pancreatitis, but have friends that have suffered) but have learned throughout the time I have been a member that this is a very caring group. Many people receive their messages in a daily post (once a day) and it may be awhile until you receive an answer, but I do wonder if your doctor is a GI (Gastreonologist) or has any exprience with pancreatitis. Also, there are many nutrition and general hints that the members often share. You need to drink lots of liquids (especially water) and limit your fat intake. There are many causes of pancreatitis, but you need to elminate alcohol completed (even cough medicine, food cooked in alcohol, etc). Many members also take enzyme supplements as it helps to digest your food. There are also other medications to help with pain, and maybe others will be able to share some of the ways and places to apply for medical help with the costs involved. I think the more important step would be to find a doctor that is knowledgable - and there is a surgery (the removal of the pancreas and islet cell transplant) that more and more people are having. Unfortunately it is very expensive and results vary, but the pancreas performs many vital functions, but as it deteriates and can cause more problems. There is alot of information on the websites at <A HREF= " www.pancassociation.org " >www.pancassociation.org</A> and <A HREF= " www.top5plus5.com " > www.top5plus5.com</A> . Please feel free to post any questions. If you want to share your state there are some representatives and someone may live close to you and know of a doctor they would recommend. Welcome and I hope this finds you having a good weekend, Gail West, Midwest Regional Representative Pancreatitis Association International <A HREF= " http://www.pancassociation.org " >http://www.pancassociation.org</A> gwest1955@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Hi , I am sorry to hear of your pain. I am also 29 years old and didn't start having trouble with my pancreas until 98-99. I do not have children (soon I hope) so I cannot imagine how you are raising for little ones and dealing with the disease. Could you tell us where you live? This is helpful because someone in the group may know of a good doctor in your area that you could go see. At least your doctor is giving you something for pain, for a lot of people that is a struggle. I know what you mean about the hydrocodone making you mean. It has that affect on me when I take it to many days in a row. Or it makes me really sensitive to noise. Has your doctor put you on pancreatic enzymes to take with your meals? As far as amylase & lipase not being elevated anymore that can happen with chronic pancreatitis. I know it gets discouraging when you feel like the doctor isn't helping you. That is what we are here for, when you are feeling down, have questions or even when you are feeling good. Post your questions and you are surely to get a response from someone. Welcome! Sending lots of happy thoughts your way..... Marisa~San Diego, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Dear , Don't apologize for telling us how it has been for you, a sob story, perhaps, but we have all been there one time or another, or too many times, and do understand how this disease can make you feel. You are welcome to air your complaints or your successes whenever you feel the need. We're here to listen and to try to make it better for you by offering our interest and support. It must be difficult to have CP and keep up with all those young girls. I say CP, because although it sounds like you started out with just acute pancreatitis attacks, through the years the disease has sneaked up on you so that now your pain pattern acts more like the chronic condition. It's funny how one medication can have such different side effects from another, and one effect one person totally different than another. It's too bad that the hydrocodone didn't do well for you, when I took that I was very satisfied with the way it made me feel. The important thing is to find the right pain medication with the most acceptable side effects that will still treat your pain. If you have difficulty getting enough pain medication due to your lack of insurance, there are programs available where qualifying patients can get their medication for free. Tell me if you are interested in that and we can direct you to the website where you can learn about these programs. For many of us, as the disease progresses, our lipase and amylase levels fail to rise higher like they did in the beginning. But that certainly doesn't mean that your episodes of pain are any less, though, does it? I'm sorry about the reasons that caused you to seek us out, but very glad that you joined and I hope we can be of some help to you. Please post again and tell us if there is anything you think we can do to make life easier for you. With hope and prayers, Heidi Heidi H. Griffeth South Carolina SE and SW Regional Rep. PAI, Intl. Note: All comments or advice are personal opinion only, and should not be substituted for professional medical consultation. > Hello, my name is . I am 29 years old and ....have been fighting with my pancreas since 1994. I have no insurance and think my DR really does'nt want to mess with me, although I have to say his nurse is wonderful and she has gotten me in to see him for free once. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 > > > > Could you tell us where you live? This is helpful because someone > in the group may know of a good doctor in your area that you could go see. Has your doctor put you on pancreatic enzymes to > take with your meals? > > > Marisa~San Diego, CA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Chasta, congrats on getting through the qualifying! That's a big one. Keep reading the posts and ask questions on anything you can think of. There's a lot of information that comes out that you don't get from the dieticians or doctors. Welcome, welcome!!! Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/237/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Chasta, congrats on getting through the qualifying! That's a big one. Keep reading the posts and ask questions on anything you can think of. There's a lot of information that comes out that you don't get from the dieticians or doctors. Welcome, welcome!!! Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/237/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 welcome aboard, sue. wtg on grabbing the reigns of your life. & btw, i started w/ a BMI of 42/43 & now i'm " normal " . keep reading & posting, we run the gammut of experiences. lori h. > Hello, all. My name is Sue and I am a new member from northern Arizona. I took me a year and a > half to decide that this was the route for me. During that time gave it > one more honest try to lose weight on my own ... it didn't happen. I'll > tell you that anyone who says this is the easy way has to be ignorant. > This is a life change tool that requires such dedication to follow all > the guidelines. I know I can do this. > > As I have read your posts I realize that I do not have the great amount to > lose as many of you do. At 5'5 " , I weight 253 and I am 56 years old. I > have been steadily going up since I turned 40. My mother, who is now 76, > did the same and now she is 300+ and having great difficulty caring for my > father because of her inability to be mobile - and I might add, this lady > was a dieter with the strength of Job - exercised, dieted faithfully and > yet she has been rewarded with this in her golden years. I SEE THE > WRITING ON THE WALL - we are so alike. I already have pain in my knees, > hips, and back, high blood pressure, acid reflux, shortness of breath and > my father was diagnosed with diabetes. > > I am scheduled for pre-op visit on March 19 ( that's so far away) but I > understand the wisdom of preparing my body. My surgery will be by Dr. > Koler at the WISH Center in Tempe, Arizona. Has anyone else been to this > Center or had experience with this doctor? > > A great day to all, > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 welcome aboard, sue. wtg on grabbing the reigns of your life. & btw, i started w/ a BMI of 42/43 & now i'm " normal " . keep reading & posting, we run the gammut of experiences. lori h. > Hello, all. My name is Sue and I am a new member from northern Arizona. I took me a year and a > half to decide that this was the route for me. During that time gave it > one more honest try to lose weight on my own ... it didn't happen. I'll > tell you that anyone who says this is the easy way has to be ignorant. > This is a life change tool that requires such dedication to follow all > the guidelines. I know I can do this. > > As I have read your posts I realize that I do not have the great amount to > lose as many of you do. At 5'5 " , I weight 253 and I am 56 years old. I > have been steadily going up since I turned 40. My mother, who is now 76, > did the same and now she is 300+ and having great difficulty caring for my > father because of her inability to be mobile - and I might add, this lady > was a dieter with the strength of Job - exercised, dieted faithfully and > yet she has been rewarded with this in her golden years. I SEE THE > WRITING ON THE WALL - we are so alike. I already have pain in my knees, > hips, and back, high blood pressure, acid reflux, shortness of breath and > my father was diagnosed with diabetes. > > I am scheduled for pre-op visit on March 19 ( that's so far away) but I > understand the wisdom of preparing my body. My surgery will be by Dr. > Koler at the WISH Center in Tempe, Arizona. Has anyone else been to this > Center or had experience with this doctor? > > A great day to all, > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Have you discussed your diet with your doctor? You need to be focusing on protein mainly, then veggies then fruits if you can get them in. I personally eat protein above all else. Fish, eggs, cheese, chicken, turkey, steak (ground beef isn't good for me personally) ground turkey, etc are all good sources but you need to watch the fat intake in meats (beef especially). If after you eat that, you can eat a little veggies--not things like corn and peas because of the sugar content--but real veggies broccoli, cauliflower etc, then eat a little of those. Me personally, by the time I finish my 1 piece of Kroger fish or my 4 oz. of deli turkey or whatever I'm full enough that I know I shouldn't eat anymore without risk of dumping. This is just my opinion. Others might have something else to say.... T. Lap RNY 6/20/03 432/270/170 Houston, Dr. Adam Naaman Visit my homepage at http://users3.ev1.net/~leeds/ " I will find my way, I can go the distance. I'll be there someday if I can be strong, I know every mile will be worth my while, I would go most anywhere to feel like I belong. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Have you discussed your diet with your doctor? You need to be focusing on protein mainly, then veggies then fruits if you can get them in. I personally eat protein above all else. Fish, eggs, cheese, chicken, turkey, steak (ground beef isn't good for me personally) ground turkey, etc are all good sources but you need to watch the fat intake in meats (beef especially). If after you eat that, you can eat a little veggies--not things like corn and peas because of the sugar content--but real veggies broccoli, cauliflower etc, then eat a little of those. Me personally, by the time I finish my 1 piece of Kroger fish or my 4 oz. of deli turkey or whatever I'm full enough that I know I shouldn't eat anymore without risk of dumping. This is just my opinion. Others might have something else to say.... T. Lap RNY 6/20/03 432/270/170 Houston, Dr. Adam Naaman Visit my homepage at http://users3.ev1.net/~leeds/ " I will find my way, I can go the distance. I'll be there someday if I can be strong, I know every mile will be worth my while, I would go most anywhere to feel like I belong. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 welcome yanira! wtg on the 100 lbs. lori h. > HI my name is yanira poststop i had gastric bypass sep,16,2003 i was > 340p and in four months i lost 100p i feel very happy but the only > thing is that am not eating much because i dont know what to eat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 welcome yanira! wtg on the 100 lbs. lori h. > HI my name is yanira poststop i had gastric bypass sep,16,2003 i was > 340p and in four months i lost 100p i feel very happy but the only > thing is that am not eating much because i dont know what to eat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Many, Many of us find ourselves much more fertile after surgery. We have had alot of members on this group and another I am on who have had surprise babies after surgery and they were told they probably would have none. So yeah, you probbably will be much more fertile after. i do not know why your doc is making you wait 2 years though. Most is just 1 year wait or tops I have seen 18 months but ai know from the groups that it is more like a year and as long as you can eat well and get in all your nourishmnet you are good to go. Good LUck to you with the surgery and the baby God Bless, Robin, NorthEastern, NY EDD- July 27th, 2004 IT'S A BOY!!!!!! Mommy to: & (twin boys 7 1/2), Madison, daughter, 5 years and Wife to Pup 15 years (October 31, 1988) Gastric Bypass Surgery- October 18th 2002 Start-378, current- 246(pregnant) goal 170 after baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 BIRTH CONTROL! Make sure you use it for a year after surgery because fertility skyrockets but YOU DO NOT WANT TO GET PREGNANT TOO SOON! Sorry for hollering but you don't. You want to maximize the benefits of the surgery and since as you say you are young you have plenty of time if you take a year after surgery to let your body adapt to surgery before pregnancy. mailto: dferguson@... BTC, Columbus, 10/7/98 New Member > Hello Everyone!! > > I am so glad I found this group. My name is Chasta, and I am finally > going in on April 26th to have my WLS. Its been a long process, but > very well worth it. > > Here is a little info about me. I have been happily married to my > hubby for 7.5 years. I have one daughter, her name is , > and she is almost 9 years old. She was a product of a previous > relationship. My husband and I have been trying to get pregnant since > the day we got married, and have had no success. I have had a couple > of dr's tell me I am infertile due to me being overweight, which > occured with my pregnancy from my daughter. I just kept on gaining > and gaining...etc!! I was on chlomid for a few months. Got up to > 200mgs, and still no ovulation. It has been very frustrating. So > being that I am getting the surgery done, I am hoping that we will > have success at trying for a baby after the two year mark. My hubby > and I are still pretty young. Were both 28 years old. So we still > have a lot of time left to have more children. I would appreciate any > kind of advice from you lovely ladies. It is defiantly going to be > wierd to be thin again, let alone being a mommy again, after 11 years > or so!! lol > > Thanks in advance! > Chasta > pre-op April 26th, 2004 > Wife to > Mother to > Hawaii > > > > > Children are a blessing, and a gift from the Lord. -Psalm 127:3 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Chasta, Welcome to the group and congrats on your upcoming surgery! My hubby and I tried to get preggers prior to my surgery without success. It still took us nearly 2 years after my surgery to get preggers, but it all happened naturally, hopefully the same will happen for you. Keep us informed and I can't wait till you tell the group you have a little one on the way! Axelrod New Member Hello Everyone!! I am so glad I found this group. My name is Chasta, and I am finally going in on April 26th to have my WLS. Its been a long process, but very well worth it. Here is a little info about me. I have been happily married to my hubby for 7.5 years. I have one daughter, her name is , and she is almost 9 years old. She was a product of a previous relationship. My husband and I have been trying to get pregnant since the day we got married, and have had no success. I have had a couple of dr's tell me I am infertile due to me being overweight, which occured with my pregnancy from my daughter. I just kept on gaining and gaining...etc!! I was on chlomid for a few months. Got up to 200mgs, and still no ovulation. It has been very frustrating. So being that I am getting the surgery done, I am hoping that we will have success at trying for a baby after the two year mark. My hubby and I are still pretty young. Were both 28 years old. So we still have a lot of time left to have more children. I would appreciate any kind of advice from you lovely ladies. It is defiantly going to be wierd to be thin again, let alone being a mommy again, after 11 years or so!! lol Thanks in advance! Chasta pre-op April 26th, 2004 Wife to Mother to Hawaii Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi , Welcome! Our kids have very similiar backgrounds. My son Braeden was hospitilized several times for aspiration pneumonia in the last year and a half. He isn't quite out of the woods yet but, he is getting stronger as he gets older. He has a pulmonology team that follows him but, they haven't mentioned checking Braeden for lung damage? Is this something I should be looking for? It makes sense but, it never occured to me until I read your post. Any info would be helpful. I hope all is well with you and Jillie and I look forward to knowing you! Saundra, Mom to Braeden (Rss, continous G-tube fed, prilosic, levoxyl, mirilax and arbuterol treatments) and Delaney (non-RSS) 18 month old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Jodie, I remember you, your husband and your 3 beautiful active boys well. I've been reading about your appointment with Dr H. Are you going to stop the growth hormone for a while? Are you going to continue to see Dr H or keep going to CHOP? I'd love to chat after my appointment tommorow. Let me know if you still have my #. Best wishes, - In RSS-Support , " Jodie " wrote: > hi victoria!! > it is jodie, christopher's mom we met in MA. remember, i am one of > the ones jillie took a liken to!! i havent had a chance to give you > a call yet, but i will on friday if that would be a good day for you > as well. good luck with you visit with dr. h on the 29th!!! i will > tell you all about ours or you can look back through the posts from > last thurs. feel free to email me at jlcals2003@ yahoo.com (no > space after @) it was a pleasure meeting you and your family in MA > and i hope to cont to talk with you!! this is a great group of > people here and they will try and help with what ever you need > emotionally!! good luck!! > jodie > ps jillie was just the cutest!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Ken, It was a pleasure meeting you and seeing your wife again (I met her at convention last yr) at the MA meeting. It was nice to see the kids being so active and rambunctious. I'm looking forward to the day when Jillie moves like them! -- In RSS-Support , " kmerrith " wrote: > Hi , > > Glad to hear from you. > > We met (briefly) at the RSS get together in Mass. > > I hope we can answer all your questions or at least get you pointed > in the right direction. > > I hope your daughter was alright after our meeting. Many of the kids > at the get together seemed to have formed war parties and were > actively hunting anything that moved. I know I was ambushed several > times. > > Anyway, welcome to our group. > > Ken M > > > > > Hi Guys, > > I've been reading your messages for a week and an really impressed > > with the support you give one another. I found out about the > support > > group last week when I attended an RSS get together in Massachsetts > > with my husband Errol, son Ethan age 5 and RSS daughter Jillie > almost > > 2. > > > > Jillie had a GT placed when she was 3 months old and a > fundoplication > > when she was almost 8 months. She had the fundo so young as she had > > been in the ICU multiple times with aspiration pneumonias which > > subsequently damaged her lungs. GJT's were tried several times > prior > > to the fundo but she had several intussussceptions (bowel > > obstructions). After the fundo, she gained 9lbs in 6 months and I > was > > scolded by Dr H at convention last year for making her too fat. She > > did have some problems with retching for a while which resolved > early > > this year with the addition of periactin. > > > > Nowadays, she is fed pretty much exclusively via GT and needs > oxygen > > to sleep or when she gets any respiratory infection. She is not on > GH > > as of yet but we do have our first appointment with Dr H in NY this > > Thursday. I think she is still a little too chubby in relation to > her > > height to start GH just yet. She has been on a weight maintenance > > program for 9 months (i.e. aim is to maintain vs. gain weight)! > > > > I enjoyed meeting some of you last year at convention and then most > > recently at the RSS get together in MA. When we were at convention > > last year, I could not be as sociable as I would have liked as > Jillie > > was quite fragile needing oxygen when upset with noise etc.. She is > > hardier this year and copes with social activities better. Indeed > she > > was scooting up to several women in MA last week and flirting with > a > > few of the men. > > > > Hope your lives get easier and remain enriched by friendship. > > > > Best wishes, > > > > Howland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Saundra, Thanks for the welcome. I hope Braeden is well right now. How old is he? Was he put on a ventilator for his aspiration pneumonias? Does he have an oxygen requirement? Is he on nebulizer treatments? Lung damage can be seen on a regular chest X Ray and usually requires an oxygen need. It generally improves with time and growth so long as the cause of insult to the lungs is removed. Is he still aspirating? Ask his pulmonologists if he has any lung damage from aspirations. Jillie is unusual. She needed oxygen pretty much from birth as she was obstructing on her tongue. She also has traceomalacia, which is a " floppy trachea or windpipe " . Then she started refluxing and aspirating causing some lung damage but it took us a while to work it out. Attempts to stop the aspirations with a GJT were unsuccessful due to her obstructing on the tube so we were forced into a fundoplication at 7 or 8 months. Since then, her lungs improve on a monthly basis but she still needs oxygen to sleep or if she gets a respiratory infection. I'm pretty confident she will be off oxygen in the next yr or so. Hope to hear from you soon. > Hi , > Welcome! Our kids have very similiar backgrounds. My son Braeden > was hospitilized several times for aspiration pneumonia in the last > year and a half. He isn't quite out of the woods yet but, he is > getting stronger as he gets older. He has a pulmonology team that > follows him but, they haven't mentioned checking Braeden for lung > damage? Is this something I should be looking for? It makes sense > but, it never occured to me until I read your post. Any info would > be helpful. > > I hope all is well with you and Jillie and I look forward to knowing > you! > > Saundra, Mom to Braeden (Rss, continous G-tube fed, prilosic, > levoxyl, mirilax and arbuterol treatments) and Delaney (non-RSS) 18 > month old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi victoria!! yes i do have your number still and i will give you a call on friday afternoon (i babysit thurs and christopher goes to school at 12pm friday so i will call after that) good luck with your appt.!!! can't wait to talk to you!! jodie (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " periactin, johnathon- 10m nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi le, welcome to the group! My youngest daughter, Olivia, has RSS, she's 4.5 yrs old and she was diagnosed when she was just over 3yrs. We have had a horrible time getting Dr. to listen to us or to even believe that there was anything wrong with her. Are you a member of MAGIC? If not, I strongly advise joining, I think it's about $30 per year and it's well worth it. From them we ordered a ton of RSS articles and have taken them to all of her Dr's. Some have not been interested but for the most part they are interested because of the fact that I'm educated about it ( try and use big words, they like that for some reason, lol) and have info for them since they have never heard of it or if they have heard of it all they know is " failure to thrive " but not all of the other issuses that our kids face. What was your son's weight and lenght at birth? and now? I hope this isn't to confusing, feel free to e-mail me privatly anytime t-lfuller@ shaw.ca (without the space) Leah, mom to 9yrs and Olivia 4.5yrs RSS, OI, lactulose, senokot, zantac, cyproheptadine (periactin) > Hello, my name is le. I have a 7 month old son who has RSS. I > am quite new to all of this. Did anyone have trouble getting doctors > to listen to them? I am usually looked at as an overprotective > mother. Also, is anyone going to the conference? If anyone has any > advice for me, please feel freeto tell me. I need all of the help > that I can get.talk to ya soon--le Quote Link to comment Share on other sites More sharing options...
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