Guest guest Posted January 7, 1999 Report Share Posted January 7, 1999 hey Michele- not to far right? Thanks for responding i appreciate it. tell me about your little charge wonder! Does she have cognitive delays or not. i am beginning to think that everyone is having more physical problems then cognitive but we are on the other end. Marlee has been very lucky to accomplish what she has but been stuck as a three year old is starting to get to me. Never really learning what is right or wrong and then testing me constantly. She is my first child and probably the last due to the fact that i am scared to death to have another although our chances are slim of having another besides i am not even married any more so it is not like i am seriously thinking about it. well please fill me in on your situation. thanks Lee momma to MARLEE chArGER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 1999 Report Share Posted January 7, 1999 lee- My daughter, Aubrie, is 13 mos old and probably functions much like a 6-7 mos old. Of course, I don't know yet where we'll be in the future. Medically, she is doing great now! She had a coarctation of the aorta repaired at 8 days old and was very sick for her first several months. She also has a gtube, ear tubes, and has had glaucoma and eye muscle surgery. As far as CHARGE surgeries go, those are pretty mild and the only thing in our future is a redo of her eye muscle (knock on wood). She had severe GE reflux until a few months ago. Now she is eating orally during the day with her tube hooked up over night and virtually never vomits. Developmentally, when placed in a sitting position she can maintain it unassisted for several minutes. She just learned to play peek-a-boo and imitates some sounds and facial expressions. She doesn't like to be on her tummy but is getting better at rolling on her tummy and lifting up on her elbows to play. She has been able to roll back to front and front to back for a long time, but has usually chosen not too. She doesn't make any consonant babbling sounds yet. Just coos and " kiss " sounds (lip smacking). She seems to hear very well but we continue to monitor for mild hearing loss. She has tested with a loss when she has fluid in her ear. She has a large coloboma in one eye so we think she has limited vision there. But she seems to have great vision in the other eye and uses both eyes together well. She's due for a vision test this month. She's a darling baby but I, too, am frustrated by the developmental delays. In our case, she's so young that no one can tell me if she's just " delayed " and will catch up one day or if she will never reach a " normal " potential. Given that she was so sick for so long, she's probably only been truly interacting with her environment for about 6-7 months so that would mean she's on target developmentally. We also have a 7-yr-old son who is wonderful with Aubrie. He doesn't know that she should/could be any different. She is responding to him now so he loves to play with her. I think they adore each other. Aubrie was planned to be our last and I am glad because I share your fear about what could happen if we got pregnant again. Michele mom to Aubrie (13 mos) CHargE and (7 yrs) IL westml@... Quote Link to comment Share on other sites More sharing options...
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