More in Depth Update on Emerie

Hi everyone! We got Emerie's test results back and from a orthopedic surgeons view they still cannot make a diagnosis. They tell us that it doesn't mean that they are 100% sure that it is still not in the orthopedic area. They decided that Emerie needs to wear a neck brace every time she is asleep for the next four months until our next appointment with them. They also really believe that she needs to see a pediatric neurologist again( which she has seen 12 already at Vanderbilt that tell us there is something wrong with her orthopedically). So they are sending us to a doctor at the University of Kentucky Medical Center that specializes in cerebral palsy. They still think there is something wrong in the neurotransmitters in her brain that work her muscles from her head to her waist. They told us that she definitely does not have cervical dystonia. They are leading more towards cerebral palsy. So we will see when we see this new doctor. She is going April 29 so please keep us in your prayers on that day. She will go back to the doctor at the shriners hospital in July. The shriners do not deal with anything except orthopedic surgery and plastic surgery for burns so they will no longer cover any of her doctor and hospital visits to Lexington, Ky. UK Medical Center is not the place we really would have chosen to take Emerie, but I feel like I am doing everything I can for Emerie. So I have to pray and beleive that this is the path that God has chosen for us and in God's time we will get to the doctor that can finally diagnose Emerie and guide us how to best take care of Emerie for the rest of her life. We have to beleive that this is all God's will and he will carry us through. Also, Emerie does not like this neck brace at all. It is much bigger than the one she wore after her neck surgery. She feels like we are choking her. So far we have not been able to get her to keep it on so keep her in your prayers. She has had to deal with so much since she has been born and it breaks out hearts to do one more thing that scares her and makes her miserable. She is going back to her craniofacial surgeon in April to learn more about her surgery. It would be a answered prayer if we can wait longer. We just prayer that her brain is not outgrowing her skull and we have extra time. Many people look at Emerie and say she is beautiful and looks good so why don't we just leave her alone,but what people don't understand is that if we just leave her alone they would quickly see what is wrong with Emerie. If she does not go to physical therapy she cannot keep her head off her shoulder. If she misses an appointment she quickly regresses. She is talking because she has speech and feeding therapy. God lead us to wonderful and caring therapists that we truly beieve have Emerie's best interest at heart. We are so thankful to God for blessing us with them. It not only affects Emerie's neck but all the muscles from her neck down to her waist. It is not a normal life for a 20 month old to have to have all this therpy every week but it is what Emerie is learning to deal with. If we did not have therapy Emerie probably would not even be able to walk, because if you cannot hold your head up you cannot balance enough to walk so therapy is helping her be as normal as she can be. Nothing comes naturally for her.