Guest guest Posted November 15, 2001 Report Share Posted November 15, 2001 , Another reason to buy the Manual if someone wants the whole thing is that they will get notified when we have an update. Do need to remember to send in the form near the front of the Manual. n Brighton wrote: > Hi ! > > I thought I'd copy off the sections needed for > specialists, like the endocrynologist we see tomorrow, > but our PCP wants the whole thing, and that's an awful > lot of copying. I thought it'd be easier for me just > to order another for her. -- n A Norbury, Executive Director CHARGE Syndrome Foundation, Inc. 2004 Parkade Blvd, Columbia MO 65202 USA phone/fax; (families only) mailto:mnorbury@... or mailto:marion@... web site: http://chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 Hey, welcome to the group janice nad katie, Bel ] 18year old CHARGEr (no subject) > Hello, my name is Hiltner my wife Janice and I are parents of a 13 > month old beautiful CHARGE girl named . This is our first time on the > CHARGE list so please allow me to give you a brief history. has > colobomas (into the retina and optic nerve),possible choanal stennosis,and > moderate to severe hearing loss(bone and nerve). She also was born with a > bilateral cleft lip and palate, and has microcephaly.On DEC.22nd 2000 > underwent surgery which included P.T. tubes,Nissen fundiplication, G-tube,and > a glossopexy (where an ENT sutures the tongue to the lower lip to correct an > obstructed airway). also had her lip repair on Feb. 14th 2001. It's > been a long 13 months but we are proud to say that is doing remarkably > well considering everything she has gone through! On Monday Nov. 19th > is scheduled for palate repair surgery and a possible glossopexy take down .. > We are quite concerned about 's airway,trachealmalacia, intubation > -extubation,apneic spells, as well as recovery time. We would appreciate any > advice we can get. We would love to hear from you! THANKS! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Kris- What wonderful news!! Keep us posted as your pregnancy progresses! Michele W mom to Aubrie (4 yrs) CHaRgE and (10 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Thank you all for your wonderful words of encouragement. We really appreciate it! Hugs Kris - Mommy to (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16. ie - 14, MIchelle - 13, new baby due July 3rd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 I'm not there in all respects, but I can see it coming quicker than I'd like!!! maria (no subject) > Women's Mid-Life... > > > Mid-life is when the growth of hair on our legs slows down. This gives > us plenty of time to care for our newly acquired mustache. > > In mid-life women no longer have upper arms, we have wingspans. We are > no longer women in sleeveless shirts, we are flying squirrels in drag. > > Mid-life is when you can stand naked in front of a mirror and you can > see your rear end without turning around. > > Mid-life is when you go for a mammogram and realize that it is the only > time someone will ask you to appear topless on film. > > Mid-life is when you want to grab every firm young lovely in a tube top > and scream " Listen honey, even the Roman Empire fell, and those will, too! " > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Heidi,This is alittle away from this topic but hope you have some insight!! I am wanting to try Cumanda, Revestrol, Samento....some of the microbials that you mention but am concerned about a couple of things. We have tried Cumanda with him and saw some great things but about day 16 or so he got white bumps all over his mouth, tongue, lips and they hurt him greatly. I was ready to push through this but I am pregnant with our 3rd child due in Nov. and got scared of what might be coming out of him could be measles, rubella, etc and something that I may get and harm the baby. I have read quite abit about how you have to be careful when pregnant and what viruses my come out when treating. I hate to stop treating this as we saw good things but also have to thank of the baby. I am also so frustrated as I obviously wont be able to do this treatment in the near future if viruses are coming out as we are not vaccinating the baby. Do you know if herbs like I listed bring the viruses out where if you use Valtrex it will kill them off and my concerns would be nill. I hope this makes sense and any help would be appreciated!Tami Quote Link to comment Share on other sites More sharing options...
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