Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 Jodi, Of course you are exhausted. It so difficult to seperate your self from the pain your child is in, but I really hope it works out that you can go out with your friends. You can't take care of others unless you take care of you self!! Get some rest and get out for a couple of hours. It will do YOU good and in the end, help Max. To my friends, Peace and Prayers Mark dad to P. 4 ( 5 in April), G-tube Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 How right you are, Mark. Today was dedicated to sleeping. Tomorrow is NYC. (And I can sleep in the car while drives!) Hopefully on Thursday I will be back at work, although if you read my post to Dennise, you will see the problem there. I don't care. For the first time in my life I am taking care of myself. I need to in order to be strong. Jodi Re: (no subject) > From: mdppdm@... > > Jodi, > > Of course you are exhausted. It so difficult to seperate your self from > the pain your child is in, but I really hope it works out that you can go out > with your friends. You can't take care of others unless you take care of you > self!! Get some rest and get out for a couple of hours. It will do YOU good > and in the end, help Max. > > To my friends, > Peace and Prayers > Mark dad to P. 4 ( 5 in April), G-tube > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/0/_/229381/_/953071595/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Thank you for letting me in on 's progress. It is a very hard decision as a parent to go through but I know when the time is right we will most definitely go that route. How long did it take for him to adjust to the tube. My son is very active and so far isnt falling behind developmentally in any way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 , Thank you . Good luck with everything and I am sure we will be talking. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi , Our endo wants to give hime time to fully recover from surgery, she is also very curious to see what happens in terms of his growth after he has the repair. No, Josh does not have a g-tube, I imagine this will be persued more vigorously by many of my doctors if after his heart surgery he does not grow better. The concern is not with appetite but rather his volume of feed. Josh has never taken more than 5 oz at a time & this concerns our develpmental ped ( he follows us through the feeding disorders clinc) He & our pediatrician have prepared me for the g-tube push. I don't know why but this bothers me more than growth hormone. My husband & I have already decided that this is the route we will follow, giving the shots won't bother me much but it may bother my husband. I know that sounds callous but I have already geared myself up - if Josh were diabetic I would give him shots sometimes twice a day. In our eyes this iss something that can only benefit him. I asked our endo many qusetions in terms of side effects and she has reassured me in every way & has given me statistics that I am satisfied with. So know it is just a matter of getting through heart surgery which in the gran scheme of things is most important. Another thing that I found interesting, when we saw nephrology on Wed he said that he wouldn't be at all surprised if the acidosis resolves after surgery also. That would be so wonderful!! - mom of (3yrs) & (14mons,11lbs5oz,RSS,ASD) ville, New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2000 Report Share Posted March 18, 2000 , He went back to normal activities right away. He stayed overnight in the hospital and that was it. I think they send some kids home the same day. They wanted to make sure that he got fed through it and that they trained us on tube feedings and cleaning the tube etc. Judy Re: (no subject) > From: Al72569@... > > Thank you for letting me in on 's progress. It is a very hard decision > as a parent to go through but I know when the time is right we will most > definitely go that route. > > How long did it take for him to adjust to the tube. My son is very active and > so far isnt falling behind developmentally in any way. > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > http://click./1/975/0/_/229381/_/953351118/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Cheryl, I remember only too well that first time I put Max on one of those little school buses! I was so scared to have him being driven by a total stranger. And the program he went to was a 40 minute drive! But I insisted on a car seat for him, so I thought that made him safer. You do the same. He will be small, so he will need the car seat. Don't be afraid to speak up when the time comes! Jodi (no subject) > > > Jodi, > > Thanks for sharing Max's education. It's great that you found the right program > for him. I used to be so upset that and would be in school > before and that he'd be real behind. Now 's going to be in > school before them - go figure? Like you stated, early intervention is key. > I'm already having anxiety attacks of putting on one of those little > buses and sending him off to school. I got 11 months left to try to get hold of > myself. Since we're planning on placing an Implant in , we plan on him > going to a normal school with normal children with special teaching. I do not > plan at this time to place him in an institution for the deaf. If our school > doesn't work out, then I'm sure we'll have to rethink things. It's so hard, > like I'm sure every parent goes through, making sure you make the best decisions > for the child. I'm sure we'll hit some peaks and valleys with bumps along the > way, but hopefully end up doing what is ultimately best. > > I appreciate your story on the deaf school close by. These children, like any > with a disability, are able to compensate for what they're lacking without any > problem. They can't hear, but that doesn't mean they can't communicate. > Signing is one way; eye contact is another. We've been working a little on > sign, but mainly want him to speak. In the meantime, he is so visually alert > that he doesn't miss a trick to what's going on around him. He's so smart, it's > scary sometimes. It's actually hard to believe he can't hear us cause he sure > acts as if he can. Anyway, now I'm rambling, but feel all this type of > information may benefit others out there. No matter what the problem, there are > people to help you get through - whether they be doctors, psychiatrists, school > professionals, or just our little group of internet friends. Thank God we all > met! > > Cheryl > Mom to , , and - 25 mos. > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/0/_/229381/_/954022481/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 Stacey, There is no real test for RSS. It is diagnosed by a looking at a set of characteristics and making the diagnosis from there. If you go to the MAGIC site, you will find a better list and more information. Don't be scared by RSS. It is relatively easy to deal with. Jodi (no subject) > From: smartin916@... > > I know all of you hate to go back in time and keep explaining the symptoms of > your child, but maybe some one out there won't mind doing it one more time. I > really think my 5 yr old has RSS. She even has the curved finger! She was > born 46xx but because of the smallness of her genitals we are rearing her as > 46xy. She is 5yrs old and weighs 20lbs and is 36 inches tall. We have thought > for a long time that she had Opitz syndrome, but i'm not to sure after > considering RSS which fits her better. I really need help in deciding what to > do. You see she also has CP due to a beed sometime during birth or shortly > after. She had a g-tube because they thought she was failure to thrive. So we > did feedings though this with no weight gain or height change for many years. > I think it is something hormonal that is wrong because they took her testes > very young when they found them during a fundal operation. would anyone tell > me about there child and what I should look for in mine. I want to call the > doc and have her tested for RSS but I'm scared. Stacey > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/937/0/_/229381/_/954255955/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 Stacey, Won't she need some kind of female hormone replacement? Is she being followed by an endo or geneticist? Sounds like she has other issues that need to be dealt with. My son, , is 4 1/2 and weighs 28 pounds and is 36 1/2 inches tall. He has a normal size head for his age and a small body for his age. His ears are slightly low set and has a pointy chin. Triangular shaped face. His forehead protrudes a bit (frontal bossing). He never had an appetite as an infant and now has a feeding tube. All in all, cute as a button. I could go on and on. I would be happy to answer any more questions. Welcome to the list! Judy ( 4, Zack 10 and Cody 8) (no subject) > From: smartin916@... > > I know all of you hate to go back in time and keep explaining the symptoms of > your child, but maybe some one out there won't mind doing it one more time. I > really think my 5 yr old has RSS. She even has the curved finger! She was > born 46xx but because of the smallness of her genitals we are rearing her as > 46xy. She is 5yrs old and weighs 20lbs and is 36 inches tall. We have thought > for a long time that she had Opitz syndrome, but i'm not to sure after > considering RSS which fits her better. I really need help in deciding what to > do. You see she also has CP due to a beed sometime during birth or shortly > after. She had a g-tube because they thought she was failure to thrive. So we > did feedings though this with no weight gain or height change for many years. > I think it is something hormonal that is wrong because they took her testes > very young when they found them during a fundal operation. would anyone tell > me about there child and what I should look for in mine. I want to call the > doc and have her tested for RSS but I'm scared. Stacey > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/937/0/_/229381/_/954255955/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2000 Report Share Posted September 7, 2000 Hello amy same here had surgery in dec. found out I was pregnant and due in march. glad to know someone else is out there. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2000 Report Share Posted September 8, 2000 Congrats Amy Keep us posted! right there with you!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2000 Report Share Posted September 8, 2000 Congrats Pam! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 My weight fluctuated within 5 pounds the first4-5 mos of pg. I conceived 9 mos postopand and had a healthy text bookpregnancy. Everyone is different Lenore At 06:26 PM 10/11/00 -0400, you wrote: >Hello everyone i have only posted a very few times.. Anyways my name is amy >and i will be twelve weeks pregnect tomarrow. I had my surgery Feb. 28, >2000-so it hasn't been as long as it should of been.. I have been very sick >these past couple of months but trying to eat the very best that i can. I >had an ultrasound done about 1 week ago and doc said everything looked great. > My doc also said to try and stop worry because that only makes things worse >and that my blood counts looked OK not great but OK. She said believe it or >not but she has seen worse from other people who have not had the surgery. I >no that sounds weird but i am sure its true. > >THE ONLY GOOD ADVISE I HAVE FOR ANYONE IS TO PLEASE WAIT UNTIL YOUR SUPPOSED >TO GET PREGNECT BECAUSE YOUR BODY IS NOT READY FOR IT AT ALL. OR AT LEAST >MINE WASN'T.. I SHOULD OF BELIEVED EVERYONE WHEN THEY SAID HOW FERTILE YOU >BECOME BUT I HAD TO USE FERTILITY WITH MY DAUGHTER SO I JUST THOUGHT I >WOULDN'T HAVE TO WORRY. SO WE THOUGHT THE PULL-OUT METHOD WOULD BE >PERFECT--NOT...!!! > >Anyways i do have a question.. How long did everyone continue to lose weight >after they found out they were pregnect because my weight loss hasn't really >slowed at all. > >Well thanks for listening to me.. > > > talk to you soon Amy > 311 ON 02-28-00 > 294 ON 03-14-00 > 286 ON 03-22-00 > 273 ON 04-13-00 > 266 ON 05-01-00 > 259 ON 05-15-00 > 246 ON 06-05-00 > 239 ON 07-01-00 > 230 ON 08-02-00 > 221 ON 09-01-00 > 212 ON 09-29-00 > 206 ON 10-10-00 AND 11 WEEKS PREGNANT!!!! > 5ft 6in > surgery date 02/28/00 > BTC in > Dr Batay-Csorba >http://www.obesityhelp.com/morbidobesity/profile.phtml?N=Dombkowski949194788 >MY ICQ NUMBER IS 84681087 > > >Children are a reward from the Lord. >Psalm 127:3 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 CONGRADS. ON THE BABY BOY NICE SIZE TO GLAD EVERYONE IS DOING GOOD. PAM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 Congratulations ( & family) You're in my thoughts and prayers. Hope you along with baby are doing well Debby Tampa > Yep........it finally happened. > > Cant tell you the whole thing but here are the basics..... > > Baby Boy Kauppinen born Wed. 4/11/01 at 7:20pm via c-section. > 8lbs 12 3/4 ounces > 13 1/2 inch head > 14 inch chest > 20 1/2 inches long > > We are deciding on a name by Mon or Tues and will post his full story asap. > > He breast feeds WONDERFULLY and has no problems going from breast to > bottle/formula......he is a JOY! > > Please pray for his billirubins to go down as they are causing him problems. > We also need him to start pooping again to get it out. > > Thanks! > , Eerik, Chloe' and loverboy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 Congratulations, Amy!!! Glad you're back! : ) -K sweetnsassy0326@... wrote: > Hello everyone I have been gone for along time having a baby but now > that I > have had my son I am back and ready to start losing weight again. I > was so > afraid that getting pregnant so soon would mess up my surgery but I > don't > believe it has at all. It might of slowed my progress for a while but > now I > am back losing again. > I delivered a very healthy boy on April 13 weighing 6 pounds 7 ounces > and 20 > inches long. The hardest part of being pregnant was how tired it made > me > feel and drained. > > Anyway I am glad to be back and losing again. > > talk to u all soon > amy > > surgery date 2-28-00 > starting weight 311 > i am currently down to 182 and had a healthy baby boy > > Here is my weight loss story and pictures if you would like to take a > peek > <A > HREF= " http://www.obesityhelp.com/morbidobesity/profile.phtml?N=Dombkowski9491947\ 88 " >amy's > weight loss story and pictures</A> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Have you had your daughter classified? someone asked me that once, apparently if she is, the state helps with finance. I think it might be done through the school system. hope this helps. debbie Quote Link to comment Share on other sites More sharing options...
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