September 3, 2005 - Erik's CA Update

Hi Everyone! Sorry it has been a while since we updated! This week has been busy. Erik was diagnosed with high levels of ammonia in his system. Apparently the new medication he was given last Sunday to treat his seizures can do this. They did say that the reaction of high ammonia is not common and can indicate an underlying metabolic or enzyme related condition. We will be meeting with the genetics staff to learn more about this. It apparently is something that is good to know about. Also, now that we know about it, it should be manageable. They did stop the medication and now he is more responsive and interactive. It is just so good to see this!!!!! We also have made the decision to undergo another surgery within the next 2 weeks. The physicians want to remove the blood and tissue (mass) from the procedure on 8/26 and treat another small one that they found. The removal of the mass should relieve some of the pressure in Erik's skull and will eliminate future complications from the mass. The greatest risk of this procedure is a stroke. Although we are not thrilled about another surgery, we realize that this is another answered prayer and will give Erik the best chance for recovery. This is the manifestation of a miracle. Some of you may remember that since Erik's diagnosis, we have been told many times that the mass was one that could not be blocked off or removed because all of the arteries and vessels supplying the blood flow to his major organs were connected to it. I remember driving down the road praying and crying and asking God why Erik had to have THIS TYPE of mass. I asked Him why Erik wasn't given a chance by having a mass that could be removed or blocked off. After a while, we just accepted the fact that this could not be done and we stopped thinking about and praying for something that did not seem to be in our future. As I think about the past 3 weeks or so, it seems like God is giving us a break. I do believe all that we have been going through has been a test of our faith. Boy oh boy has it been tough! We have stuck together as a family and with our Christian friends and family we have made it this far but we are tired. I feel like God has reached down and answered our prayers from 2 years ago by touching Erik and making all of the procedures we are doing here possible. THIS IS TRULY A MIRACLE! Our immediate prayers are: 1) For Erik to continue to get stronger every day; 2) For Erik to seize NO MORE; 3) For the physicians to be utilized to do God's work through their skills; 4) For the procedure to go better than expected and for him to once again amaze everyone through his recovery; and 5) For the procedure to be done in God's time. We understand that this type of procedure has a greater than average recovery period. To use the doctor's words, "Who knows. Erik really amazed us last Saturday after the initial procedure so let's hope he does it again after this one!" We really feel we have been obedient by coming here. It is tough for our family to be separated but the doctor's really seem to care about Erik. Every time they come to see him, they always touch him and talk so kindly and appropriately to him. He watches them and seems to be relaxed when they are around. We really can tell they care about Erik and our family. Thanks to all of you for your prayers and encouragement. Please be in prayer for the things listed above. I am attaching a photo from a few nights ago. Erik is doing well. Love in Christ, Erik's Family