News from April 2008 Wednesday, April 30, 2008, 9:00 a.m. I am so sad to report that precious little Harry (friend with MPEI) passed away on Monday night. Harry is the first child that we found that was similar to Micah. It is through the Harry's Journey website that we found the MPEI diagnosis for Micah and have now connected with other families who have children with the same disease. Most of the parents would attribute their connection to this support group and their growing knowledge of MPEI to Harry and his family because of their website. Harry just turned 5 years old this month, and they had a big birthday celebration 2 weekends ago for him in England where they live with over 70 people. I was thinking then that I don't know if I would do a party that big for Micah since he would not be aware of it and his mood would be unpredictable, but I am so thankful they have that wonderful memory of so many celebrating Harry's brave and precious life. We are so sad for this family and their great life. We are so thankful for their example and the knowledge they have brought to us and so many, but my heart aches most for them and others who do not have the hope of our Savior. There is something missing as I read others' entries offering comfort and condolence. I am reminded of the urgency to share the hope that is with in me and the peace we can only have in Jesus. Please pray for this family and for me as now there are just as many parents who have lost children as those who are still living who are a part of our support group. We have talked about developing some resources on our website so that we could point people there if they are interested in what we have to say. This is a big task that is overwhelming to me. I pray that God will make a way. Micah is doing well overall, continued good and bad days. But when we hear of the suffering of some of these children, we are so thankful for how much God has protected Micah from, and we are reminded to pray proactively for what could easily come. Thank you for your prayers; they are the support and encouragement that keeps us going. God is good! Wednesday, April 9, 2008, 12:00 p.m. We are healthy at the moment and have been healthy for almost three weeks. Thank you for your prayers. I really love the winters and colder weather, but I have been looking forward to warmer days and sunshine more than ever before. Micah has had a lot of good days this week. Monday, he was smiley and even laughing the whole day. Yesterday, he did not want to be touched and was very irritable all day, but he was wide-eyed and alert. He was very aware visually, more than usual, just as long as we didn't touch him. Today, he is having another happy day and really enjoyed school this morning. So we never know from day to day what he will be like, but we are learning to work with whatever good he can give us each day. There are other days that are just for sleeping or fussing or even pain, but those days have been fewer lately, and we are so grateful. I have received several comments lately from different specialists who work with Micah that they unanimously see significant improvement for Micah over the last several months. That is such an encouragement to me. I lose perspective and can’t always see the progress, but others see it. What a blessing. We had a big vision assessment at the Specialty Eye Clinic at U.C. Berkeley two weeks ago. We have been waiting to have this appointment for over a year now. Praise God, Micah was awake for that as it would have been pointless otherwise. After 90 minutes of lights and flash cards and video monitors and EEG testing, the specialist determined Micah definitely has visual response and was very optimistic as to what he was able to see. The EEG (electrodes hooked to the brain to record response) test showed a better visual response than her more subjective interactive testing. Basically Micah has about 20/300 vision. Which in terms that relate to Micah, that means he can see something that is 11/2" big that is held 2 feet away. The EEG test showed 20/100 vision which is common with kids who have this level of testing to test better electronically. This means that he probably has the ability to increase in vision at least to this point. We are still talking legally blind, but we are glad to have some more information. We should be receiving a written report soon that will be more helpful in how to help him visually. There is nothing wrong with Micah's eyes. This is strictly a problem with the pathways to the brain, so his vision can be drastically different from day to day depending on how the connection from the brain to the eyes is working. We also have made contact with a doctor in Philadelphia who has done research on MPEI to see if he would be interested in doing more research with Micah and the other children who are apart of the support group. We will be taking a vacation this summer to the east coast and would love to work this into our trip. You can pray for a response and clarity with this opportunity.