Guest guest Posted April 10, 1999 Report Share Posted April 10, 1999 Jeanie, Aubree was just so small and much younger looking that she really didn't look sick. She really wasn't sick, except for ear infections and sinus infections. That was really about it for Aubree. She never experienced anything more than that except her heart surgeries. The doctors even said that they were so surprised that Aubree was as healthy as she was, she had at least 7 holes in her heart that were repaired. She was actually just like a baby that could walk. Aubree also did not walk until she was almost 5 years. When she first started crawling she was about 1 year and she would lay on her back and scoot with her legs. She did this so much that the hair rubbed off on her head. She is now walking, she has just a little problem with balance. ---------- > > To: CHARGEonelist > Subject: Re: CHARGE > Date: Tuesday, April 06, 1999 9:37 PM > > From: toby.c@... (Toby Colp) > > CINDY WELLS wrote: > > > > > > > > Toby, > > > > Believe it or not, but Aubree had absolutely no GTube. This is what has > > stumped me. I keep reading that > > this little chargers are not eating and are being feed through a tube. > > Aubree has never had a problem with any kind of food. She eats like a > > horse. There is nothing that she doesn't like. Aubree's left ear is not > > normal looking, but it's not bad. Her right ear looks real normal to me. > > Until Aubree's heart was fixed, she was very small. At the age of 9 she > > weighed about 22 lbs. She wore a size 4T shoe and her clothes started at a > > little girls 6, but that was big. She was tiny, tiny, tiny. Very fragile > > looking and a different color to her. Once she had her first open heart > > surgery, her whole coloring changed. She also gained 20 lbs. after about 3 > > months of her 1st surgery. Now after her third heart surgery she weighs 68 > > lbs. She is tall, and still looks skinny, but she is all leg (lucky). > > > > I could go on and on. Thanks for listening. > > > > Wells > > Skeeter - Husband > > Aubree 14 Years (charge) > > Rhoni 16 Years > > > , > Oh my Gosh, MacKenzie weighs 21lbs now at 10months. I can't even > imagine how fragile Aubrees' health must have been. You must feel very > lucky to have her at all. > MacKenzie had trouble with feeding from birth, with no exact > diagnoses. We know know that she has severe reflux and some swallow > difficulty, which is getting me down, because the kid would eat anything > and I'm not allowed to feed her. But if it means protecting her lungs > we'll hold out. > > Jeanie Colp > > ------------------------------------------------------------------------ > Tired of empty chat rooms and out of date bulletin boards? > http://www.ONElist.com > ONElist: Making the Internet Intimate > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 1999 Report Share Posted April 10, 1999 , Destiny is 6 years old and has Charge (or CHARgE as we like to say). She was diagnosed when she was 3 days old while in the hospital. Here is how Charge affects her: C--Cranial nerve damage. Still learning how to swallow. Was totally tube fed until almost 5 years old. Now takes 50% of nutrition orally, 50% via button g-tube (placed at age 11 months). NO COLOBOMA (blind spots) H--Heart defects. Very mild. PDA and co-arctation (narrowing) of aorta (surgery at age 8 weeks), bicuspid aortic valve A--Atresia of the Choanae (blockage of the nasal passage)--very thick and bony, opened at age 1 day. Only 1 surgery required. R--Retarded growth and development. She is short, but not underweight. Mild to moderate delays--esp speech. Potty trained at 6 years old G--Genital/Uniary--DOES NOT AFFECT DESTINY (HURRAY!!) E--Ear malformation and hearing loss--Her ears are low set and differently shaped. Mild to moderate hearing loss. Wears hearing aids. Other associated features--Asthma, cleft lip and partial palate, micoaspiration, severe reflux (fundoplication at age 11 mos), hypersensitivity in hands (as a baby), mouth and ears, frequent ear infections and illness--multiple hospitalizations, strong, beautiful personality. I hope this helps. Good luck w/ your search! Quote Link to comment Share on other sites More sharing options...
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