Our visit with the neurologist
I'm sorry it has took me so long to do a update on the neurologist visit last Wednesday. He was very nice and he told us that at this point we need to try the botox. We have nothing to loose and hopefully something to gain. He told us he does believe the problem may be in Emerie's brain also, but he did not want to give us a diagnosis yet. He said since Emerie is a difficult case he wants to treat and if his treatment works then diagnose Emerie. He said he is tired of all these doctors giving us different diagnosis' and nothing ever turns out right. So he is going the opposite direction. He said Emerie does not need anymore labels in her medical charts. He talked with me for over an hour which is very unusual. Emerie is usually terrified of most men especially doctors. She usually goes crazy when they try to touch her, but she let the doctor pick her up and he massaged her neck for 20 minutes. He wants to try botox in 5 weeks when her muscle has healed back together. The catch is he wants her neck to be really bad on the day he injects her. So we will have to just get up one morning and know it is the day. The botox is dangerous and it is very painful, and he does not want to sedate her at all. The reason for this is when you sedate Emerie her muscle relaxes and almost appears normal and he needs to see the muscle contracting at its worst. He said it will take 15 injections and he may spread them out over a 2-3 day period to make it less traumatic for Emerie. He said that if he can't inject her because we can't hold her down then we may have to be forced to sedate her. I don't think he realized how strong she is. He will soon find out. He said to give her motrin every 6 hours from now to he does the botox and do not miss a dose to help with pain control. So we are in a waiting period again. Jeff and I have not completely decided that this is the route we are going to take so keep us in your prayers that we will make the right decision because we feel like we made the wrong decision with the surgery. We just want to do the right thing for Emerie. He asked me my goal for Emerie and I told him that Emerie's neck does not have to be straight but it would be nice for her. We just want her neck straight enough for her skull to grow straight, and continue to grow straight after the cranial reconstrution surgery so she does not have to keep repeating that surgery. He told me that we have the same goals. He said he does not know if Emerie's neck will ever be 100% but we have to try to get close for the sake of her skull. He also thinks that the helmet is more important than the collar at this point but we were told she had to wear the collar 4 more weeks, so the day she comes out of the collar she will have to go get the helmet put back on and hopefully the doctor can give us a timeline for the cranial reconstruction surgery. She has been back at therapy and the first day she could only tolerate it 30 minutes but today she lasted the whole hour and did very well. Jeff got to take her to therapy today for the first time and she was so excited. Another amazing thing happened to Jeff and I last Friday and we were speechless which many of you who know Jeff is almost impossible. We have such wonderful and amazing friends and church family. We were told to meet some of them at the church last Friday night and we thought they were going to take our van and have some work done on it and they told us earlier in the week they would have something for us to drive while they worked on the van. So we thought that was why we were meeting them. When we got to the church there was a van sitting there and they told us it was our van now. We both had tears in our eyes because our vehicle situation had been a big burden to us lately. Jeff's truck he uses to mow broke down in August. The transmission went out for the second time in 14 months. His car he uses to get to work has been breaking down on his way to work and everywhere. We are so overwhelmed with medical bills we did not know how we were going to fix any of the vehicles. Jeff's job is also real slow right now because cars are not selling so it has been tough. So we are just overwhelmed with what GOD has once again done for us. We both just put these cars in his hands and just prayed we would get where we were going safely. Boy did he show us what prayer and faith can do for us. GOD has never let us down through our journey and I know if we are faithful he will never leave us alone to deal with anything. The people who had a part in this just can never imagine what an amazing gift this was to us. They told us this van came directly from GOD. We don't know the whole story but they told us they will sit down and share it with us later and I will definitely pass it on to all of you. The van is the same year as our van but it has less miles and the kids think we got a brand new van. This was such an amazing experience for our children because they got to see first hand how great our GOD is. Thank you Missy for getting the whole thing together and for being so faithful when GOD lays something on your heart. I hope that anyone that had a part in this receives all the blessings GOD has in store for you. We love all of you and words could never express how grateful we are. If anyone of you have anything you ever need please do not hesitate to call. GOD IS SO AWESOME!
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