Guest guest Posted November 25, 1999 Report Share Posted November 25, 1999 Deb, Welcome back to the list! Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. 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 November 25, 1999 Report Share Posted November 25, 1999 Deb, Welcome back! Sounds like you're a busy woman~!! I'll look forward to hearing more about Devon... Mom to Kennedy 21 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Introduction (again) Hi Everyone. I just wanted to introduce myself. We were on the Charge Emailing list a couple of years ago and left the internet. Now we are back. My name is Deb. I have five children.. Jillian is 11, Devon has Charge/Vater Overlap and is 10. Kaitlyn is 5, two step daughters.. (8) and (5), who we have custody of every second weekend. Jillian, Devon, and Kaitlyn live with us full time. Oh yes, we just got a puppy. A sweet little cocker spaniel named that pretty much poops everywhere but on the paper. Devon has Colobomas in his eyes, one being worse than the other. (He can see well enough to function independantly). He is hearing impared so he uses hearing aides. He has Pulmonary Stenosis and a small septal defect. He was born with Renal refluxes but seems to have outgrown them. He had an extra digit.. ( little thing that looked like an extra thumb complete with nail), T-E Fistula, Facial Paralysis (tube fed and suctioned for the first two years) , now Devon can eat and drink on his own. He can still throw up in a milli-second.. usually if he gets excited, begins coughing, or we have company over for a meal :-). My goodness, I know I am forgetting things. He has had 13 operations and hopefully when he is full grown that number won't increase any. We have some issues with Devon's growth. His bone age has been determined to be around 8 yrs old. His testorone levels are quite low. Oh yes, when we was 5, he fell off his bike, developed a staph/strep infection... (Original dr determined it was the flu), within 24 hours, he was in kidney failure. To make a long painful story short... Devon has a skin graft on his face below his eye. The following year, due to scar tissue, a second graft had to be done on his lower eyelid. Devon's health has definately stabilized. Thank Goodness for that. I got tired just reading some of your emails. I don't think I really slept the first couple years of Devon's life :-) Devon now uses sign language to communicate plus some oral skills. It's very difficult to understand Devon's speech unless you know him, but he rocks at sign. I have trouble keeping up with him. He is a happy well adjusted little boy in Grade four. He just taught a sign language class (I helped ) to my 5 yr olds Spark class. Last night, Devon and I discussed Charge Syndrome to his Cub Scout group. Anyways, just wanted to make this introduction. From the keyboard of Deb " Insert catchy phrase here " Quote Link to comment Share on other sites More sharing options...
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