Several people have asked if we have any news yet, so I wanted to make a quick post. We have had input from several people and have felt led to change directions a little in our referral up in Chicago. So we have changed the neurosurgeon to which we are seeking an appointment. We now just have to wait on that office to contact us, and wait and pray that our insurance will authorize this "out of network" doctor. I am hoping to hear on both by the end of this week. We are also at some point going to need another MRI, this time of his spine, before going to Chicago. That office will have to give us exactly what they want before we schedule it. In this they will be looking for any causes of the Chiari or other issues that might be originating in the spine. We have completed a Swallow Video X-ray. His swallow is very strong with no problems right now, so we praise God for that. Please keep praying for God's wisdom and guidance in sorting through the choices we need to make, and for insurance to authorize our request. Pray most of all that God's will would be done and that we would be sensitive to the path He has laid out for us.
I have also been asked many times, "how am I, Sam, our family... doing?" It is not always easy to answer this question. So here is the best I can sum it up. Sam knows that the decompression and fusion with rods is a possibility. I am not sure he realizes yet it is a probability. He seems to be handling it pretty well. He has asked a few questions about what he will and would not be able to do. He says he "really, really does not want to do that." But he also understands on a 10 year old level why they feel it should be done and says if it has to happen he thinks he can deal with it. He is pretty sick of doctor appointments, but has really been a trooper. I am mostly trying to fill his days with what fun we can find, and keep his mind off of all of it as much as possible.
Colin is taking everything in stride. I am not really sure he gets the magnitude of what all this means yet. Nate is feeling the stress in the house I think. He has always been one to need attention, but that seems to have ramped up a notch. Please pray that I would be able to provide him the attention he needs as best I can, and that others would help us take up the slack while we are busy taking care of other things. (Right now I am spending a great deal of time on the phone with doctors and insurance.) I would also pray that somehow God will get the kids through all this feeling all the love, security, and faith that they possibly can.
As for Greg and I, we are keeping our heads and perspective in the right place. We have been focusing on God's sovereignty and trusting Him. That being said, for me personally, I would like some prayer for a few specifics. I have struggled with sleep and it is making it hard to cope some days with the tasks and emotions that are going on right now. Please pray that I would sleep peacefully, and that I can daily continue to place Sam's future and well-being in God's hands, and that I can find joy in Him each day.
Lastly, I want to thank all of you for all of your prayers, thoughts and messages of encouragement. Greg and I were overwhelmed to see all of the amazing people that God has allowed us to know over the years. He has allowed us to know some of the most extraordinary people of faith, and we are humbled to have you praying for and loving our family. Know that we thank God for every one of you and appreciate hearing from you.
I will post again when I have news on an appointment and insurance, or anything else. Thanks for your continued prayer.
No comments:
Post a Comment