Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Welcome to the Lambert's and the 's. Janet Wife to Matt Mom to & (CHaRGEr) 7 1/2, nne 2 3/4 Mom to 19 months and 2 Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2000 Report Share Posted January 29, 2000 Carol and Vince, andria is so lucky to have grandparents that care as you do.How fortunate you are to have !!! I met him in Houston and sure do wish he was on Jillian's team. He's so awesome!! Welcome to the CHARGE list. You will get so much information here and be able to talk to so many parents who have been where you are and can help in realizing what may be going on with andria. Sometimes when the docs don't know, the moms and dads on the list do. But you have Dr. so you are at a definite advantage !! Foley, Mom to 4, (my CHARGE guy in heaven) and Jillian 22 months w/cHaRGE in Broad Run, Virginia USA andria. > > > Hello everyone. > My wife and myself are grandparents to a 2 1/2 year girl with CHARGE and have just joined ONE LIST. It is amazing the amount of mail that comes through the list and > full credit must go to Casey for the work and dedication that she has put into this over the > last 3 years. > Together with our daughter and son in law you soon realise > that you are not alone in having a CHARGE child with some being more unfortunate than > others, but this does not diminish the love that you lavish on the child who is part of your > family. I will now let andria tell her story. > > HELLO. > My name is andria and I'm 2 1/2 years old. I was born at Gosford Hospital > on the Central Coast about 50 miles from Sydney (capital of NSW). I was stabilized and > baptized and taken by helicopter to the Royal North Shore at Sydney within the first 4 > hours of life > I was diagnosed with CHARGE Association at 2 days of age. As my nasal > passages were both blocked ,I had my first nasal operation at 3 days of age. I was in > intensive care for 12 weeks and I had 5 more nose operations. It continued to close up > so the medical staff at RNS decided to sent me to The New Childrens Hospital at Westmead for a tracheotomy. It was here that I found Dr. WILLIAMS and my life began to have some hope. Dr. WILLIAMS had no idea I even existed. He decided > not to do a tracheotomy but to persist with the nose operations 9 operations later the passages have stayed open. I have also had a heart operation, a fundloplication and a > gastrostomy button whilst there. > I was sent to Gosford Hospital in December 97 to get me ready to go home. After spending the first 6 months of my life in hospitals I was finally sent home on the > 21 12 1997, just in time for Christmas. I was continually fed overnight and was monitored while I slept. I have a big sister Emma, who is 4 3/4 years old She helps me > learn and live as normal a life as possible. > I have no balance as I'm totally deaf in one ear, so everything has taken longer and been harder for me to do. I use to scoot around on the floor on my back, > leading with my head and pushing with my feet, but in early August 98 I started to walk > holding on to two hands, then finally in July 1999 I was happy to hold on to one hand, > then early December 99, I started to walk unassisted. It took such a long time. My parents worry now because I'm running almost everywhere, although I can still have some nasty falls Up until 6 weeks ago I was still being fed through my button with milk > twice a day. Dr. wants my button removed so I have to go 3 months without > using it. My parents are working towards that day. I take solids and will eat almost anything but my meat needs to be pureed as I can't chew it. I used to have thickened liquids but I seem to be able handle undiluted liquids now after a lot of perseverance from my family. > I wear a CPAP mask to sleep and have yearly sleep studies. > My eyesight seems to be improving, but I have coloboma in both eyes. My left eye is worst, letting in light. I have therapists most days each week, physio. occupational and speech. I can say about 6 words and some basic sign language, which excites my parents, but I get very frustrated at times. > My fine motor skills are excellent. I understand things and follow instructions, I have a good memory. I can be very cheeky and understand what is being said to me. > The community nurse now only visits me monthly, as I'm putting on weight and starting to grow taller. I now also attend a play group for special children. > > > > > Footnote. > andria has narrow airways and has to be hospitalized frequently which is harder now she is older and does not want to be left alone, so our children and ourselves have > shifts around the clock so someone is always with her. We also have to give Emma as much love and attention as andria so the two of them will have a normal life. > andria is a delightful and fun child who shows great love to everyone around her. We hope as she grows she will live a happy and normal life. However, only > time will tell, but we feel she will survive as she is such a fighter. > > Any e-mails for andria's parents can use my address and the e-mails will be passed on to them > > Carol and Vince LAMBERT > > > , , Emma and andria MOORE. > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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