Guest guest Posted April 20, 2008 Report Share Posted April 20, 2008 That's good news, I keep Lillyanna in my prayers and I think you're a very brave, wonderful Mommy for trying to make every effort to help Lillyanna thrive! What a little blessing she is! My son doesn't have any neuro probs or any other abnormalities, so I'm not much help. I have heard Dr. D'Astous is top notch... Good luck! and evan kritchie4 wrote: Hooray!!! They finally got the problem with Lillyanna's embolization coil in her liver from her heart cath straightened out. They called me on Friday and will schedule her soon. That will finally tell us if she has scoliosis due to a neuro problem I hope. I have been reading some posts from some who have genetic problems. Lillyanna has an unknown syndrome. She has very low set ears but is not downs, she has bossing of her forhead, and had severe failure to thrive. She also has crainostenosis. She requires oxygen continuously for a reason we do not know for sure. Although she just weighed 16lbs and 12 ounces this week! Which is huge as she only weighed 7lbs at 7 months of age! She will be 18 months old on the 26th. She has no head, neck, or trunk control. She has chromosome sex translocation. Which means she has male female chromosomes. She looks normal like a female. But every time you take her diaper off she puts her hands down there like boys do!!! LOL I say thats the BOY in her!!!! Anyway I worry that this scoliosis is congential in nature. When I get the MRI results I want to take her to see Dr. Strum in Chicago. I have been told he is good with children that have multiple medical problems. Does anyone have any more ideas or comments please? Thanks - adoptive Mother of Lillyanna --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2008 Report Share Posted April 20, 2008 That is great news for you and Lillyanna! I think of you both very often and was just wondering how she was doing.... Keep us posted! Prayers, Steph kritchie4 wrote: Hooray!!! They finally got the problem with Lillyanna's embolization coil in her liver from her heart cath straightened out. They called me on Friday and will schedule her soon. That will finally tell us if she has scoliosis due to a neuro problem I hope. I have been reading some posts from some who have genetic problems. Lillyanna has an unknown syndrome. She has very low set ears but is not downs, she has bossing of her forhead, and had severe failure to thrive. She also has crainostenosis. She requires oxygen continuously for a reason we do not know for sure. Although she just weighed 16lbs and 12 ounces this week! Which is huge as she only weighed 7lbs at 7 months of age! She will be 18 months old on the 26th. She has no head, neck, or trunk control. She has chromosome sex translocation. Which means she has male female chromosomes. She looks normal like a female. But every time you take her diaper off she puts her hands down there like boys do!!! LOL I say thats the BOY in her!!!! Anyway I worry that this scoliosis is congential in nature. When I get the MRI results I want to take her to see Dr. Strum in Chicago. I have been told he is good with children that have multiple medical problems. Does anyone have any more ideas or comments please? Thanks - adoptive Mother of Lillyanna --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 You are a dedicated Mommy- I think of you often. Keep posting all the the results of all of you research. I will continue to keep you in my prayers! Jill --- kritchie4 wrote: > Hooray!!! They finally got the problem with > Lillyanna's embolization > coil in her liver from her heart cath straightened > out. They called > me > on Friday and will schedule her soon. That will > finally tell us if > she > has scoliosis due to a neuro problem I hope. > > I have been reading some posts from some who have > genetic problems. > Lillyanna has an unknown syndrome. She has very low > set ears but is > not > downs, she has bossing of her forhead, and had > severe failure to > thrive. She also has crainostenosis. She requires > oxygen > continuously > for a reason we do not know for sure. > Although she just weighed 16lbs and 12 ounces this > week! Which is > huge as she only weighed 7lbs at 7 months of age! > She will be > 18 months old on the 26th. She has no head, neck, > or trunk control. > She has chromosome sex translocation. Which means > she has male > female > chromosomes. She looks normal like a female. But > every time you > take > her diaper off she puts her hands down there like > boys do!!! LOL I > say > thats the BOY in her!!!! Anyway I worry that this > scoliosis is > congential in nature. > > When I get the MRI results I want to take her to see > Dr. Strum in > Chicago. I have been told he is good with children > that have > multiple > medical problems. > > Does anyone have any more ideas or comments please? > Thanks > > - adoptive Mother of Lillyanna > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Thanks for your support! It means so much to me! Re: Lillyanna - MRI news You are a dedicated Mommy- I think of you often. Keep posting all the the results of all of you research. I will continue to keep you in my prayers! Jill --- kritchie4 <kritchie4yahoo (DOT) com> wrote: > Hooray!!! They finally got the problem with > Lillyanna's embolization > coil in her liver from her heart cath straightened > out. They called > me > on Friday and will schedule her soon. That will > finally tell us if > she > has scoliosis due to a neuro problem I hope. > > I have been reading some posts from some who have > genetic problems. > Lillyanna has an unknown syndrome. She has very low > set ears but is > not > downs, she has bossing of her forhead, and had > severe failure to > thrive. She also has crainostenosis. She requires > oxygen > continuously > for a reason we do not know for sure. > Although she just weighed 16lbs and 12 ounces this > week! Which is > huge as she only weighed 7lbs at 7 months of age! > She will be > 18 months old on the 26th. She has no head, neck, > or trunk control. > She has chromosome sex translocation. Which means > she has male > female > chromosomes. She looks normal like a female. But > every time you > take > her diaper off she puts her hands down there like > boys do!!! LOL I > say > thats the BOY in her!!!! Anyway I worry that this > scoliosis is > congential in nature. > > When I get the MRI results I want to take her to see > Dr. Strum in > Chicago. I have been told he is good with children > that have > multiple > medical problems. > > Does anyone have any more ideas or comments please? > Thanks > > - adoptive Mother of Lillyanna > > ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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