December 19, 2008 - Christmas Blessings

Hello Everyone! WOW! What a year! Just looking back we realize how blessed we have been in 2008! There is no telling what Erik will be doing a year from now if his progress in 2009 mirrors his successes in 2008! How wonderful it is to have this to look forward to! Hope some of you were able to hear us on 93.9 KISS FM last night for the Make-A-Wish radiothon. We were on the air around 4:25pm and it was loads of fun. Erik put his "2 cents" in occasionally which was great for everyone to get to hear him! Following the on-air chat, we were able to go see the volunteers and have some dinner. Everyone with the radio station was great and very kind to us! During this time of year when we celebrate the miracle of Jesus' birth, we realize how lucky we really are to have witnessed miracles in Erik's life. God has also blessed us with a wonderful family to share this with and we are so thankful for this! We continue to pray for God to completely restore Erik. Nick's prayer is for Erik to be able to run and play with him . . . we hold on to that request and ask God to answer this prayer! We also continue to pray for the seizures to go away and be something of the past for Erik. What a day that will be!!!!! We thank you for your prayers and support in 2008 and we look forward to sharing Erik's progress with you in 2009! Love in Christ, Erik's Family

December 3, 2008 - Some for the enemy but more for God . . .

Hello! Well . . . there is more to tell! The first event since our last post was last Sunday - November 30th. We went in to get Erik up at 7:38am and found him in a Grand Mal Seizure. We administered his emergency medication and waited to see him settle. He did stop but this was followed by every once in a while he would start twitching and stop. He was doing this about every 4-5 minutes. When this had been going on for over an hour, we called Duke to ask if this was ok. We were advised that this could be his body leading up to another seizure and we were guided to get him to Duke. Before we could get out of the door, he went into another Grand Mal seizure. We called 911 and had him transported to Duke. He finally stopped seizing around 12:30pm. We stayed overnight for observation and an additional medication was added. It was interesting being back at Duke and realizing how long it had been. Mom even went to the wrong floor thinking that was where the intensive care was. This was AWESOME that it had been so long that we forgot! We use to go on "auto-pilot"! The past week and a half have been rough as we work to get the medications to a level where they stop the seizures. He had continued to expereince daily seizures (small) and we ask for your prayer support as we pray these away. Today was a good day as we went to UNC for vision and hearing screenings. Everything checked out perfect! The doctor was great in that he said a few things that really encouraged us. He said that "time would be our friend". By this, he indicated that Erik is progressing and that with continued support, he should continue to improve with his vision. His words were tat in time, his vision should be normal like anyone else. Right now, anatomically, all is well and healthy. The issue is how his brain interprets what he sees. We have seen improvement in how long he holds a gaze and in him looking towards people and things. While there, we were approached by a gentleman who said he just wanted us to know that God just laid it on him to say a prayer for Erik and us. This meant alot to us. Erik enjoyed riding the bus from one appointment to the other. I think he thought he was going to school which he loves. Thanks for your continued prayer support as we enjoy watching Erik progress daily. Love in Christ, Erik's Family

November 25, 2008 - So much to tell . . .

Hello All! Well, the title of this post says it all! We have news . . . good news . . . not so good news . . . and more! Where to start? Well, one praise is that we have had a prayer answered! Erik is no longer taking Trileptal (the medication that lowered his sodium) and a few weeks later . . . his sodium levels are normal! This is a BIG deal for us. Now for some other news . . . Erik has been having seizure activity for a few weeks now. Slowly increasing. He had a cold and fever the first week so we thought this could be the cause since any sickness increases his chances of seizures. The cold went away yet the seizures continued. We had his medication levels checked. It takes a week or so to get the results. Before we had the results and were able to change his medications, we woke on Sunday morning with Erik in a Grand Mal seizure. We are not sure what the enemy was up to but the medications we give him to stop this type of seizure did not work. We are not sure how long he had been seizing when we found him but perhaps because it went on for so long before we intervened, this is why it took a while for it to stop. After we gave him his medication, he continued to have intermittent seizure activity. Once an hour had passed, and he continued this pattern, we call the doctor. They indicated that he could be about to go into another Grand Mal seizure and that we should get him to the hospital. We were getting ready to go when Erik went into another Grand Mal seizure. We called 911 to have him taken to the hospital. He continued until around mid-day when he settled. He stayed in the hospital overnight and came home on Monday. We have introduced a new medication to assist with managing the seizures so we ask for your prayers that this will be the answer for Erik. We are not sure what the enemy was trying to accomplish but we are continuing to go THROUGH this! You may recall that many times when Erik has had spells like this, he comes out doing things he has not been able to do before. It is like God is "re-setting" him. This is what we are praying is happening now. Thanks for keeping Erik in your prayers. Happy Thanksgiving to you all! Erik's Family

November 4, 2008 - Moving in the right direction . . .

Hello All! We hope this email finds you all doing well! Erik is keeping us busy lately. He is getting more fun with each passing day! We have had a few nurses working with us lately who have not worked with us for several weeks. Their comments are that Erik is more alert, stronger (he is standing straighter and holding steadier than in the past), and is making and holding better eye contact! PRAISE GOD! As you know seizure medications are something we continue to manage for Erik. We have been successful eliminating Trileptal - the medication that has successfully controlled his seizures in the past but had the side effect of dangerously lowering his sodium. Because we have eliminated Tripetal and because the belief is that the Trileptal was causing this dip in his sodium level, we have began the process of lowering his supplemental sodium and so far so good! the fewer medications there are to administer until God completely restores Erik and frees him from the bondage of seizures, the better! Erik has experienced a few minor breakthrough seizures but we continue to pray these away. I watched a movie recently where one of the actors said that when things get rough, this is a good sign that the Lord has you on the verge of a breakthrough! Just hearing this confirmed our thought about what is happening with Erik. We are working towards him becoming medication free! Thanks always for your prayers for Erik and our family! Love in Christ, Erik's Family

September 22, 2008 - Prayer is Working!

Hello Faithful Friends! Just a quick note to let you know that our prayers are working! Erik has been seizure free since our last prayer request and we are relatively low on the medication that lowers his sodium but controls his seizure activity. PRAISE GOD! This is truly a "first" for Erik - that he is doing well with this medication so low! We are continuing to lower his medications and do ask for your continued prayers as we work to adjust his medications. We know that we are blessed to have so many prayer warriors in our lives and do thank God for you! Love in Christ, Erik's Family

September 11, 2008 - Prayer Request

Hello Everyone. We want to ask for your prayers for Erik and our family. He has been taking a medication that is very effective for controlling his seizures that we now have to stop. The problem with this medication is that it lowers his sodium level causing muscle tone and heart strain. We have tried to manage this but have found that even trying other medications has not been as effective as this medication. His seizure activity has been slowly increasing over the past few weeks. The decision was made on Tuesday to stop this medication and if needed add another at some point. Labs were drawn Tuesday so we are waiting for the results to know how to proceed. As has happened in the past when we have begun to lower this medication, immediately Erik's seizure activity increased and . . . yesterday was not a good day. He was lethargic, and had significant seizure activity. Not a good day for us at all! We are praying for the right medication to be identified for Erik. Our understanding is that the next class of medications have more serious side effects and our prayer has always been that we would not have to go to these. Our ultimate prayer remains for the seizures to dissipate completely!!! Medication changes bring with them 4-6 months of challenges - specifically with seizure activity. That is the thing with seizures, because of the way the body processes the medications, it takes so much time to get the medications to a level that is effective and then while you are working on this, seizure activity generally increases. Yesterday was a bad day but you know . . . that day is done and in the past! We know that God has something exciting waiting for us on the other side of the current challenge because the enemy is definitely working hard to deter us!!! We will all have to continue to lift each other up in prayer! Love in Christ, Erik's Family

August 27, 2008 - Lots going on . . .

Hello Everyone! Well . . . the title of this post says it all . . . we have lots going on! The biggest thing going on for Erik is that he started school this week! He attends Cedar Fork Elementary and so far so good. There are 8 students in his class and he is doing his best to keep up with everyone. He has a nurse who attends school with him (Mrs. J) and they seem to be getting into a routing quite easily. Transportation picks them both up in the morning and brings them home. The first 2 weeks he is going 1/2 days and then it will be full days after that. His teachers and therapists are getting to know him now and he seems to be responding positively to all. This is such a relief for us all! Erik has been struggling with seizure activity lately and as such he had an MRI on Friday - August 22. All went well and we have not heard from the doctors that anything has changed which we are interpreting as good news. We have a follow-up in September. We have adjusted his medications and ask that you continue to pray for complete healing from these seizures. Erik does continue to strengthen his muscles - especially his back muscles. We can actually support his hip these days and he will stand straight. He still moves his head around some but can stand with his head steady for longer periods than he has in the past. Our prayer is for him to be able to first sit up on his own followed quickly by standing and walking. We know this is a short note but we did want to let everyone know how things are going. Take care, Erik's Family

July 12, 2008 - Disney Photos!

Hello Everyone! We do hope everyone is well. We have been busy with various transitions: Margot starts highschool and Erik starts "out of the house" school in August, Brigitte and Nick started 5th and 1st grade this week, Margot and Mom went to Chicago on a missions trip, and Margot will be going to a Youth Leadership Conference with the church the week of July 21st. All of these activities have or are keeping us busy making arrangements and preparing. We have successfully posted photos from our Disney trip for you to enjoy!!! We also changed the layout of the website. If you click on the photos, it will take you to a website that will allow you to see the photos larger and you can see the captions we added. Make-A-Wish was wonderful to make this happen for our family! We still cannot believe all that they did for us! Erik continues to make progress and we ask for your continued prayer support as we work to make the transition from in-home school to attending school at Cedar Fork Elementary. We believe he is medically stable enough to take full advantage of what the school system has to offer - this is a miracle in itself! Praise God!!! Erik continues to have "break through" periods of seizure activity which we believe may be the result of his continuing to grow. He had a pretty serious seizure on Tuesday so we continue today to work through the effects of the medication today. Hopefully tomorrow her will be doing much better and will be back to himself! Please continue to pray for the medications to control his seizure activity until the Lord completely frees him of this condition! We do hope you enjoy the photos! Love in Christ, Erik's Family

May 6, 2008 All of our prayers were answered!!!!

Hello Everyone! WOW!!!! We are just so excited to share our story with family and friends! Our Make-A-Wish trip to Orlando / Disney was truly AMAZING for us all!!! We realize that we will never be able to have another time together like this one because it was just perfect!!!! Some of the unexpected WONDERFUL surprises for us were: -- Make-A-Wish truly took care of everything we needed or could have anticipated! -- Give Kids The World was awesome and unbelieveably accommodating and kid focused. -- Give Kids The World staff waited on us hand and foot. -- The Make-A-Wish financial support was more than adequate for meeting our needs. -- Give Kids The World delivered an amazing bag of age appropriate goodies (movies, toys, snacks, etc.) - EVERY DAY! The kids really looked forward to this each morning! -- Characters at the Magic Kingdom appeared to "seek us out" which the kids thought was great! -- We actually did not have to "ask" for things - the pin from Give Kids The World and the Make-A-Wish hat for Erik were recognized and highly honored. We were able to walk right up to characters for autographs and photos, walk right up to rides and even ride them twice if we wanted to! -- Parking and stroller rentals were taken care of which saved us quite a bit of money. -- The giving continues for us even now. Give Kids The World has arranged for us to have free admission at Global theme parks for the next year! This will encourage and motivate us to continue to venture out with the entire family. As for Mr. Erik . . . he was a trooper! He had absolutely NO SEIZURE activity the entire time we were away! This is unbelievable and completly God's answer to our prayers for this because he has been having 2-3 spells of some type weekly. Also, he hung with us all day long without any napping and was still ready to go at 10:30 at night! He LOVED it! Erik's favorite thing was the trains we encountered. We have been told multiple times that because of the brain damage he has sustained over the years he would not be able to grasp cause and effect relationships. Each time we witness him showing that he has this ability (recognizing family members, expressing protest when he knows we are laying him down for bed, etc.) we know that this is a gift to us from God. He got to the point on the trip that when he heard the train coming (not the whistle - just the train sound) he would start vocalizing and smiling. He knew what was coming! He also loved the fireworks which we were uncertain of what his reaction would be! Thanks for all of the prayers you each offered up for us prior to and while we were on our trip. It was truly a trip we will never forget and the kids REALLY deserved the wonderful treatment they received after the challenging journey we have had with Erik's health. It was an irreplaceable and un-re-creatable gift for us to see the smiles on the kids faces as they were catered to and we could never have imagined it would be like this! Thanks again and we hope you will continue to partner with us as we pray Erik to complete restoration! We plan to post photos from our trip for you to see soon . . . Love in Christ, Erik's Family

April 22, 2008 - Prayers for our Make-A-Wish Trip to DISNEY!!!

Hello Everyone! Just a quick note to ask that you lift us in prayer because the time has arrived for our Make-A-Wish trip to Disney! We are all very excited because we leave on Sunday - April 27th and return on Saturday - May 3rd. When this wish was granted, Erik definitely was in no shape to have fun on such a trip. Our prayers have been answered and we now know that he is ready to experience it all! We are preparing for the trip but at the same time the enemy is trying to deter us. Erik's seizure activity has picked up despite medication increases but we know that this is what our family needs and we are continuing to prepare. Please pray for the seizures to cease and that Erik will have no more seizure activity starting now! Do keep us in your prayers because it is quite an undertaking to pull it all together! We will be staying at Give Kids The World which is a place designed and only open to wish kids. Love to all . . . Erik's Family

April 9, 2008 - Erik continues to progress . . .

Hello all! WOW - so much has happened in the last month . . . let me think back . . . Erik is doing well. He continues to struggle with some seizure activity which we are trying to address with medication adjustments. Please keep this in your prayers. We were also pleased that Erik was approved for nursing, supplies, etc. for another year as he has received in the past. YEAH!!! This is an answered prayer because he is making progress and we were afraid that some of his services would be reduced or taken away which could slow future progress. This month, we also were excited to see some progress on another front. It was publicised about 3 weeks ago that Duke infused stem cells in a pediatric patient with positive results. Take a look at the video ( http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3924774n). We started following clinical trials related to stem cell research over a year ago (Wake Forest and Harvard for Parkinson's patients) so naturally we found it fascinating and exciting that they recently performed the procedure right here at Duke . . . on a child no less! We are following up with the doctors and at this point, they are only infusing stem cells if they were saved from the cord blood at the time of birth. We did not save Erik's cord blood. For some reason, God did not move us to save it so perhaps this is not God's plan for Erik. Time will tell! Please pray with us about this and the possibility of this or other therapies for Erik. It is exciting that we are able to think about things to advance him opposed to last year at this time we were thinking of things to make him more comfortable and sustain him!!!!!!!!!!!!!!!!! God is also sharing with us through our dreams lately. In our family/household, there have been at least 3 reports in the past 2-3 weeks of dreams/visions where Erik is talking, walking, etc. This is interesting to us because now we get to wait to see if these are dreams, reflections, or visions. We pray that they are visions and look forward to seeing them come true!! God has shown us visions before so this should be no different! God is also giving us "previews" of things Erik will soon do. Recently, in his sleep, he has laughed/giggled like we have ever heard him laugh/giggle before! We thought it was Nick when we heard it! We remember that before Erik started his laugh (not quite a hearty giggle), he did it right after seizures or in his sleep - unconscious state. He also continues to get more and more appropriate in his responses to us and his surroundings. For example, week before last, when his NG tube tape was removed, he cried a sad, "normal" cry instead of just vocalizing like he normally does. He also looked at us when he did it which is important. These may seem like small things but for Erik, these are major steps! This is cause and effect which we have been told - multiple times - will be hard for Erik to regain. Well, continue to pray for the seizures to go away as well as TOTAL restoration for Erik! In Christ's love, Erik's Family

March 3, 2008 - Update on Erik!

Hello Everyone! We have been busy of late but so far, all is good! Erik continues to make small steps - he is sitting up for longer periods of time without added support (I think we are up to 2-3 minutes now), he is making better and longer sustained eye contact, and he appears to be more responsive to things most of us take for granted. One example is that when he hears us come into his room in the morning, he now looks towards the door for us! This is awesome to see! We still are struggling with controlling the seizure activity. It has been better of late but we are still seeing weekly seizure activity. Please continue to pray for Erik to stay well in this time of many viruses and illnesses going around, pray for complete restoration, for complete control of the seizure activity and for him to continue to be motivated to make progress. Love in Christ, Erik's Family

January 4, 2008 - Video of Erik on the move

Check out this video of Erik moving ALL limbs! Enjoy! Erik's Family

January 3 , 2008 - Happy New Year

Hello Everyone and HAPPY NEW YEAR! We all enjoyed the holidays and were thrilled to be home together for the 2007 holiday season. We send our best wishes for a happy, healthy, and productive year for you all! Erik has been making progress yet struggling with seizures the past few weeks. We are not sure why this is occurring - growth, immune system weakened from cold or virus, medication levels, - it could be due to a number of things. We continue to help him through these and have intensified our efforts to look for warning signs so we can work to prevent seizure activity when possible. Please continue to lift him up in prayer asking for him to stabilize. Erik is strong and continues to make progress by getting stronger despite all of this! He appears to be getting physically stronger and is able to hold himself upright in a seated position (with support) for longer periods of time. He also appears to be learning to follow verbal commands. We sit him on a bench and count, "1, 2, up" and he pushes forward to a standing position (with support)! This is awesome progress and we are encouraging him as much as we can. Thanks to all of you for all you have done for us in 2007! We are looking forward to 2008 and sharing more about Erik's amazing progress with each of you! Love in Christ, Erik's Family