July 29, 2011 - Erik's Rights . . .

Hello Everyone! It has been a while since we posted but that just gives us more to share! Erik had a great year at school. He became more and more alert and engaged in the classroom and even was administered end of grade testing. He did well. He is making choices and wanting to stand more (with support) which is great. Teachers also shared that Erik became more appropriately engaged by listening to questions asked, waiting for others to respond, and vocalizing when the teacher called on him (instead of when others were asked t respond). He was fairly consistent which is great to know. We also have changed the agency that provides nursing care for Erik as well as multiple changes with therapists. Erik now not only receives physical therapy but also speech and feeding at home as well. There are adjustments with getting to know everyone but so far all is going well. Thank you for your prayers that we would find therapists to work with Erik and please continue to pray for progress in all areas. Now for the BIG news . . . On July 17th Erik surprised us ALL! While enjoying a snack and we noticed him raising and using his right arm! It was unexpected and extremely exciting! We watched him for a while and even recorded a video. We were capturing the moment with the video so it is really dark and hard to see but his right side is toward the camera and you can see him moving his arm/hand all the way up to his mouth! Even his right leg is moving! Before this he would extend it some and move it a little when excited but moving it to his mouth and out repeatedly is truly God's work! Here is the video link which seems easier to see when the screen is small. You may have to copy the link below and paste in your internet browser to view. http://youtu.be/otXI4aoAgC4 Please keep up the prayers as this progression is truly God's work. In fact, it has created many opportunities for us to share our faith through sharing Erik's progress which is a welcomed opportunity. It would typically take months of focused therapy to see Erik voluntarily move his right side like this. We saw this literally overnight. Erik's nurses and therapists immediately commented on the change too. This for us was another moment where we stopped and said, "Wait God . . . this is not even what we are praying for right now but thanks so much!" Truly God's timing is perfect! Enjoy your summer! Love in Christ, Erik's Family

February 24, 2011 - Positive Updates . . .

Hello. We have some exciting news to share. After several years of praying for thorough OT services for Erik, we are pleased to share that Erik now has a speech/communication AND a feeding therapist coming to the house weekly to work with him! We are so happy to have the addition of these 2 individuals to our team! Timing is everything and Erik is at the point where he is fairly consistently responding to things like pushing a button to indicate interest in an activity or to make a choice. This makes securing the 2 additional therapists key enabling us to take advantage of the interest and motivation he is showing towards progress. Please continue to pray for Erik to positively respond to these interventions. We continue to struggle with seizure activity. The spells are brief but he seems to be having them daily (with a few days here and there without anything we notice) and we need to figure out the best approach for reducing or eliminating these all together. Please keep this in your prayers . . . actually our prayer is for the seizures to stop all together! :) We were able to schedule a second appointment with another contractor for an estimate on converting the dining room downstairs into a bedroom with shower for Erik. Of course when the contractor arrived he immediately said they are not going to approve it, I will prepare an estimate but I can tell you that it will not be approved. So . . . what this does is make the prayer for this to come together for Erik more of a priority! We will keep you updated as things progress. As always, thanks for your continued prayers and encouragement. Love in Christ, Erik's Family

January 13, 2011 - Happy New Year!

Hello Everyone. Hope the holidays were great and that the new year is starting out well. Erik had a good Christmas and we are pleased he did not have any seizure activity on Christmas day. Past month or so have been challenging with seizure activity. Very few days lately without recognizable seizure activity. Makes things rough because even if they are brief, they exhaust him and make it difficult for him to eat, make him less responsive, and just bum us out! We have had 2 adjustments to his VNS which have possible reduced seizure activity down to 1 time per day (that we see) but we are suspicious that he is having them when we are not aware - especially at night. He has been very tired all day long for the past 5 days and we just don't see anything that could be the cause. Sleeping all night, no medication changes, etc. We are praying for a solution so keep this in mind as we know God will carry us through this. We are asking for the discernment to know what actions we should take. Erik has been doing well in school and seems to really enjoy his instructors and classmates this year. They are working with assistive technology and encouraging him to make choices which he appears to be intentionally doing! This is great to see as it does appear he knows what he is doing and is happy to be able to communicate with us through the tools available. Thanks to all of you for continuing to keep us in your prayers . . . Love in Christ, Erik's Family