size

suzanne	Posted 2005-12-07 9:11 AM (#16551) Subject: size
Regular Posts: 65	HI, i was wondering how can you tell if the rib cage is getting tight. Samuel looks like a pot bellied pig at present but I'm told that's normal even though I can't remember my eldest looking like this. His rib cage looks very small and does anyone know if hyper inflated lungs are going to be a problem as the bilateral collapse is now inflated but as I said it's hyper inflated and to be honest the consultants are driving me insane I don't know if I'm coming or going as now the previous consolidation is changed to interstitial changes. Basically what should I be watching for as our appointments are 6mths in between which gives me 6mths of just watching for what? Suzanne
Zoes Nana	Posted 2005-12-07 1:36 PM (#16569 - in reply to #16551) Subject: RE: size
Expert Posts: 3970 Location: Plymouth, Pennsylvania	SUZANNE, YOUR QUESTION IS CERTAINLY A GOOD ONE...AND I HAVE BEEN IN THIS OVER 5 YEARS, AND STILL LEARNING MORE EVERYDAY... ZOE AND I THINK ALOT OF CHILDREN HAVE THE "POT BELLY" LOOK...SOME OF IT I THINK ARE THAT THEY HAVE A SLOW GROWTH IN THE UPPER TRUNK, AND SOME OF IT IS FROM THEIR POSITIONING FOR BALANCE... I HAVE NEVER THOUGHT OF, OR HEARD THAT ZOES WOULD BE FROM HER LUNG ISSUES...I DO KNOW THAT WHEN ZOE IS DUE FOR AN EXPANSION THE SIGNS AT TIMES ARE SO SUTTLE, IT IS HARD TO TELL... IN THE BEGINNING OF THIS FOR ZOE, ONE OF THE SIGNS WERE A PAIN IN HER ARM PIT, AND SHE WOULD START TO CURVE, BUT I HAVE NOTICED AS THE YEARS PROCEED, THE SIGNS OF "NEEDING" THE EXPANSION BECOME LESS... NOW THAT COULD BE FOR A FEW REASON, AND ONE IS THAT ZOE HAS LIVED WITH THIS FOR SO LONG, SHE REALLY NO LONGER COMPLAINS ABOUT THINGS... SO SHE IS HARD TO READ... EVEN RIGHT NOW WITH ZOE HYBRID BEING DICONNECTED, SHE IS AMAZINGLY, DOING QUITE WELL... DON'T GET TO UPSET...IT IS HARD TO KNOW WHAT TO LOOK FOR, BECAUSE ALOT OF THIS IS STILL IN THE LEARNING STAGES...AND WE JUST KEEP LEARNING OFF OF EACH OTHER... GOD BLESS... Edited by Zoes Nana 2005-12-07 1:38 PM
stees	Posted 2005-12-09 11:41 PM (#16627 - in reply to #16551) Subject: Re: size
Elite Veteran Posts: 1127 Location: Vancouver, Canada	Hi Suzanne, Malcolm certainly has a belly, and it gets worse when he needs an expansion. Jobey, I really relate today to what you say about all of this being new. It sometimes, today for example, hits me that this is all so new, and that we don't know what we are doing. Hopefully in ten or twenty years when a child like ours is born, they know exactly what to do and how to prevent the continuous setbacks so many of us experience. Overall, it's a Godsend, but we're still in the experimental phase.
suzanne	Posted 2005-12-14 5:16 PM (#16764 - in reply to #16551) Subject: RE: size
Regular Posts: 65	Thank you for replying to my questions. I really do wonder sometimes if Samuels ribs look very small and i have noticed he is tilting but it's like a curve in the region below the rib cage area and this area has no complications in the spine in that area so i'm baffled as to why he seems to have a curve there. Suzanne Mom to Sam who has oav
Zoes Nana	Posted 2005-12-14 10:36 PM (#16775 - in reply to #16764) Subject: RE: size
Expert Posts: 3970 Location: Plymouth, Pennsylvania	SUZANNE, IF YOU ARE ABLE TO TAKE A PHOTO OF THE AREA, AND SEND IT TO YOUR SURGEON, THIS MIGHT BE A WAY OF GETTING AN ANSWER... WE HAVE DONE THIS WITH ZOE, AND WE SEND IT TO OUR SURGEON VIA, THE INTERNET... BETWEEN YOUR EXPLANATION AND A PICTURE MAYBE YOUR DOC CAN SHED SOME LIGHT FOR YOU.... GOD BLESS..