thanks for the nice welcome , here is our story

[Guest guest]

>We would love to hear more about your child and about why you will be coming to OKC for treatment.

Thank you so much for the very kind welcome. It is such a relief to talk to others who have been, or currently are there. I heard about your list form another mom who I was put in contact with. (it is a kind of along story, but really great how it worked out) I must apologize before hand, I got very long winded. Thank you for listening to our story and our concerns.I was in on bedrest at 32 weeks and severe problems with preterm labor. Ourson was in the same position in utero for 6 weeks and was breech. Lucas wasborn premature by 4 weeks and was in the NICU for 5 days. He had so manyproblems at birth, he was one sick little boy. I figured once we went homewe were done with "health concerns". I knew of the risks of SIDS and wasadamant that he sleep on his back. I was diligent in making sure we rotatedhim from end to end so he never slept on the sameside of his head. I still can not help but feel guilty. I keep on going overthose first few months and second guessing myself wondering what did Ido/not do to cause this.I had noticed his head was flat on the back, but didn't think too much aboutit. I figured it will round out on its own. Well, weekend before last myhusband noticed there was a problem and was very concerned. He was coming upwith all these scenarios, form hydrocephalus to cancer to brain tumor. Myhusband does not normally get excited about these kind of things, I do. Hewas wanting me to take him to the ER. I was having to remain the calm onethis time and was refusing to see anything wrong in order to hold ittogether. Although by the time we took him to the Ped. on Monday afternoon Iknew something was terribly wrong.Our Ped was not terribly concerned, took x-rays to rule out cranio. Oncex-rays came back and were fine, she wanted us to just wait it out. (Shefeels the helmet/band therapy is extreme and not necessary). Well, I had beenresearching on the internet in the 24 hours btwn x-rays taken and when weheard the results. I had spent HOURS on the net and I knew there wassomething so wrong, he had all the classic symptoms of plagio. You couldjust list them right off. I have tried the repositioning, the only time he is on his back is too change is diaper.Since he doesn't sleep on his back anymore, it is not really a concern. I donot want to see if it will work out on its own, I am not willing to justcover it up with his hair. His ears are really misaligned, wrong size, etc.The complete right side of his head, forehead, cheek, etc are look to beswollen and are 1/4-1/2 inch bigger then the left side. Some people havestarted noticing on their own that their is a problem and he looks"different". . Our ped told us we could go to St. Louis, but I am from OKC and my Dad is the former dean of the University of Oklahoma Medical School.Well, we basically insisted we would take him to a specialist. I am from OKCand am very familiar with the University of Oklahoma Health Center/MedicalSchool. My father being a physician knows many contacts since he is on thefaculty there. My parents don't really support our pursuing this and ourvery negative. Once they found out I was researching on the internet theyhit the roof! They had comments like "you don't know what you are doing","you are not a trained professional, you can not interpret those results","you are just putting ideas in to your head, causing yourself to worryneedlessly". Well, we do not feel that way at all and had decided that ifthey would not help us, we would take him to where they would. To make along story short, my Dad did get us a appt with a ped. neurologist for nextTuesday, so it is a starting point. A Dr. Park in case you are wondering. Does anyone know her?I know my parents and know they will try and manipulatethe situation. I know that they do not agree with us and they will try tomake it so we do not see the Dr who could help him or make it so we don't do what we feel is right. I don't know how I willmake it possible to let the Dr know our wishes, we want him in a band. Weare not willing to wait around and miss this window of optimal correction.Lucas will be 6 months on Saturday. We would much rather he wear a band for6mths to a year and get itcorrected. We know that kids can be mean and we do not want to give themany extra ammunition.The cost was of course a huge concern. I stay at home with Lucas and hisolder brother, Caleb. Needless to say two in diapers is not cheap.We are five hours form OKC and staying with my parents will be much cheaperthen a hotel. I spoke with an agency here in Missouri who will pay foranything we need that our insurance does not. That is such ahuge answer to prayer. We did not know where the money would come from.I don't know where to go form here. I don't know what to do. I am justdreading next week. I am sure you are probably wondering why we are evenasking my parents to help. I am not really sure, except for the fact that wealways hope our parents will do what is right. I am so grateful you to be in your group. Thanks for you your very sweet welcome to the group, but also thanks for listening to our story. I know I rambled (a lot ),sorry.

mom to Lucas 6 mths and Caleb 2

near Branson MO