Hi everybody, I'm new here, and actually found this site for a friend of mine. I thought I would ask a few questions for her, until she is able to check this site out. First of all her son is 11 mos. old and has a cleft of the soft palate only. they will do surgery in Jan. she has alot of questions of course. she is really concerned that they are treating her son as he has cleft of hard and soft palate, but he only has it in the soft. she is getting conflicting info from his team of docs on aftercare instructions. one tells her he cannot eat or drink, she can only use a dropper and "drip" fluids for like 3 weeks, another says sippy cup a few days after surgery. he actually can suck on his bottle, it's getting it down his throat instead of going up in his nose that is the problem. he eats really well too, great weight and growth. they also told her that even though he does not have alot of ear infections (he has had only 2) that he has to get tubes in his ears because of the cleft. so if any of you have ANY experience with this PLEASE let me know. she wants the best thing for her baby, but is getting confused with different info from docs.
hopefully, she will be able to get on in a few days, but in the meantime, i thought i would help her out. thanks a WHOLE bunch. i told her there HAS to be a forum group somewhere on the net, my son has a mild form of Cystic Fibrosis, and I honestly would not know what to do with my CF family ONLINE!!! GLAD I CHECKED AND FOUND MY FRIEND A SUPPORT FAMILY TOO. thanks, and I am eager to hear your input.
Carrie Lawson, friend of worried Mom