Guest guest Posted August 4, 2000 Report Share Posted August 4, 2000 To Jerry and and baby Eileen - welcome! To - the gift book is an incredible idea. I am new to the group and only wish I had access to this 14 years ago. New Years Eve 1985 resulted in a twin birth, girls, one of which has charge. Every time I read another email it brings tears to my eyes. I wondered if;I could sit and even write this as I don't even know where to begin without writing a book. Kim was born, 4lbs. 6oz., l7 in., with choanal atresia which was repaired the first time 3 days after her birth. Dropping down to 3 lbs. she did not come home until she was six weeks old. There was some talk about hearing impairment. Kim was very small only weighing 9 lbs at 1 year and did not walk until one month after her second birthday. Charge was never mentioned as her doctors saw no other problems at the time. I assumed she would catch up to her twin one day. Because of her developmental delays she was put through genetic testing and seen by a Cranial Facial Team at our childrens hospital. This is where I heard for the first time "CHARGE SYNDROME". Kim is moderately hearing impaired, MR, and has kidney reflux. Three repairs were done in the first 2 years for the Choanal Atresia. Two ureter reimplants have been done for the reflux. Having 2 systems in one kidney we are looking at another surgery down the road. Still has to have sinus surgery before the age of 18 . I am happy to say we have survived and I did'nt think I could. Kim has been such a blessing. Because of her, I am now in Special Ed. in our city school system and work with special needs children during the summer. I recently exercised my parental rights and am thrilled that Kim starts her freshman year in high school in 2 weeks. She will be able to earn a special ed. degree and will continue to be trained to the workplace so that one day she can have as much independence as she can achieve. I am so proud of her! This is very condensed because as I said in the beginning it would take a book. Any questions or comments I would love to here from you. Thank you for listening. email-lydiarivers@... Lydia mom of chrgr Kim 14, Alia 14, 16, and 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2000 Report Share Posted August 6, 2000 Hi Lydia, My name is Chip, I'm 21 years old, and I also have Charge Syndrome. I recently read your other letters about your 14 year old daughter, named Kim. I'm also hearing-impaired, vision-impaired, slow growth,and slow weight gain. (I weigh around 65 pounds and, I'm around 4'12 or 5 feet, I guess. I'm not good in math anyway). I'm from Los Angeles California. Where are you guys from? I hope that we can be friends, I have some friends on e-mails who have Charge Syndrome too! I'm going to start my 2nd year at college (Mt. Sac) in next week! 2 years ago at Mt.Sac, I first met 2 of my best friends and 1 girlfriend. (profound deaf/cerabal palsy), (back problem), and my cutie-pie Annette ( Syndrome, kind of similiar to Charge, but sort of different). I'm majoring in becoming either a dog groomer or a dog trainer! I preffered to work with dogs than other animals. Keep in touch! Type back soon! chip0616@... Chipper > >Reply-To: CHARGEegroups >To: CHARGEegroups >Subject: reply >Date: Thu, 3 Aug 2000 18:39:56 -0700 (PDT) > > >To Jerry and and baby Eileen - welcome! To - the gift book is >an incredible idea. I am new to the group and only wish I had access to >this 14 years ago. New Years Eve 1985 resulted in a twin birth, girls, one >of which has charge. Every time I read another email it brings tears to my >eyes. I wondered if;I could sit and even write this as I don't even know >where to begin without writing a book. Kim was born, 4lbs. 6oz., l7 in., >with choanal atresia which was repaired the first time 3 days after her >birth. Dropping down to 3 lbs. she did not come home until she was six >weeks old. There was some talk about hearing impairment. Kim was very >small only weighing 9 lbs at 1 year and did not walk until one month after >her second birthday. Charge was never mentioned as her doctors saw no >other problems at the time. I assumed she would catch up to her twin one >day. Because of her developmental delays she was put through genetic >testing and seen by a Cranial Facial Team at our childrens hospital. This >is where I heard for the first time " CHARGE SYNDROME " . Kim is moderately >hearing impaired, MR, and has kidney reflux. Three repairs were done in >the first 2 years for the Choanal Atresia. Two ureter reimplants have been >done for the reflux. Having 2 systems in one kidney we are looking at >another surgery down the road. Still has to have sinus surgery before the >age of 18 . I am happy to say we have survived and I did'nt think I could. > Kim has been such a blessing. Because of her, I am now in Special Ed. in >our city school system and work with special needs children during the >summer. I recently exercised my parental rights and am thrilled that Kim >starts her freshman year in high school in 2 weeks. She will be able to >earn a special ed. degree and will continue to be trained to the workplace >so that one day she can have as much independence as she can achieve. I am >so proud of her! This is very condensed because as I said in the beginning >it would take a book. Any questions or comments I would love to here from >you. Thank you for listening. email-lydiarivers@... > > > > >Lydia mom of chrgr Kim 14, Alia 14, 16, and 19 > > > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
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