by 5thtymachrm (909 Posts), Mon Jan 12, 2004 05:34 pm
Well, we finally had our visit to childrens hosp today. wow did we wait a long time [:0](3 hours after our appt time we were finally seen) one of the specialists she was supposed to see, left and went on to her next clinic in a different office.
other than that, the doc we did meet up with was wonderful and so were the nurses. We found out that Indy has a disease/disorder called hemifacial microtia. She doesn't have hearing in her right ear and we won't know exactly how much hearing she has on her left until more testing is done in the next few months. they said they can't do any type of plastic/recontructive surgery until she is around age 5. she will probably need a speech therapist and several other things over the years to help her out. I guess this could have been much much worse, the doc said most kids he sees with this have severe problems with their cheekbones and jaw and Indy seems fine, there is also some issues that can come up when she is around 3 yrs with her upper cervical spine.
We now know that it was caused by one of my pregnancy complications[:(], the blood clot that I had early on. He said it was a miracle that she made it through that, most all pregnancies would never make it through what I had. She is a fighter, and my little miracle[:I].
The was quite concerned about me ever getting pregnant again because the same thing would probably happen. I will have to have some serious testing and lifestyle changes before I ever think about getting pregnant again. God only knows why I would want to go through all that again..lol. Indigo is more than worth all of that. I do have a five year plan for my next child and to ensure it I got an IUD placed that is good for five years so I can't change my mind. I am a little sad about it all but also relieved that we know what it is now and a plan of action about it all, and we have years till we really have to get serious about surgery and the like.
Does anyone know any other children with this issue? (hemifacial microtia) Thanks![:)]
11/20/03 Indigo E. (born with no PE @ 37 weeks, 5lbs 13oz) (Pg Issues:hypertension(atenolol),hyperemesis, hypothyroidism, cancer remission, asthma, 8cm blood clot @3wks)
11/17/95 m/c @14wks
1/97 m/c @3wks
2/98 m/c @5wks
8/02 m/c @3wks