Desi, the gift that keeps on giving......

Last week I was sitting in the car line to pick up the girls. The speech therapist came running out and asked me to park so we could talk. What she said over the next few minutes literally took me by complete surprise. She started out by telling me that she and the other speech therapist had completed some of Desi's speech therapy tests. Then she went into the details of how they both felt like Desi's palate was deformed and how they could hear air escaping from somewhere in her palate or her nasal cavity. No matter where it was coming from, it wasn't right :-( She has flaps of skin on each side of her throat that are NOT supposed to be there and if all of that's not bad enough, she tells me that Desi has NO gag reflex. Nada. Nothing. They couldn't make the child gag. Folks, that's not normal :-( I spent most of last week on the phone like a mad woman trying to make appointments with ENT's, our PCP, Arkansas Children's Hospital, etc. Thankfully (it's a God thing), the lady over the Cleft Clinic at Arkansas Children's Hospital called me back and was able to get Desi in for all of her testing on October 30th. She will have audiology testing, speech testing and then she will see a doctor that specializes in nothing but palate issues. Praise God!!! Taking in all of everything these professionals are telling me, Desi is "probably" going to need some sort of surgery. As to the severity of the type of surgery she will probably need, we won't know until after all the testing is done. We would LOVE to hear that even though she has a deformed palate, that surgery WON'T be required, but we'll just have to wait and see. That's what we are praying for, because I just don't want to put our baby girl through surgery :-( One other thing that has given us cause for concern. The lady at ACH also told us that Desi will more than likely have to undergo a full genetic workup. Since she has spina bifida occulta, missing her left arm, speech and developmental delays and now a deformed palate, they will want to rule out any type of syndrome she might have. The information we'll get from this workup will also tell us of any other deformities or delays she might face. I'm scared to know, but I feel like we NEED to know so we can be prepared and also on the lookout for anything else. We love Desi so much and will do everything we can to get her healthy. Your prayers are greatly appreciated!!!