December 3, 2005 Erik is resting at Duke Children's Hospital

Hello all. Erik had a follow up appointment with the Neurologist Friday afternoon and they decided to keep him over for observation. The back of his head, where is CA surgery was, was a little puffy again and they thought it may be infected again. It is not as puffy as it was 8 weeks ago but it was a concern. Sooooo, he is back on the antibiotic to see if that helps the swelling to go down without any surgery. He will be on the antibiotic for 4 weeks and then we will see if the swelling went down. If not, then they will need to go in and clean out the infection like they did 8 weeks ago. It is really hard to get an infected bone clean and to stay clean. Please pray that the infection will go away and stay away. On a good note, they did a CT Scan on Erik Friday night and his ventricles looked really good. The Neurosurgeon was really pleased on how everything looked. It looks like the shunt is working great. He has eaten really good for Wendy and seems to be making a lot more sounds today. He is such a fighter. He may be able to come home tomorrow, Sunday, but the Infection Disease people may want to see him him before he leaves which will be Monday if they have their way. It looks like we will be taking Erik into see the Infection Disease group every week until they take him off of the antibiotic. The bad thing is now he will be back on the Benadryl for the next 4 weeks which will make him a little more sleepier. Another good note before I close. The Neurologist would like to lower Erik's Phenobarbital medicine when he gets back on his feet. Maybe in the next week or two. The thought is to slowly reduce the amount to where hopefully in the next few months he would be completely off of the this medicine. This seizure medicine is really strong and is one of the reasons Erik has been really sleepy. We are praying for no seizures and to be able to not have any Phenobarbital in his body ever again. What an awesome day that will be. Thank you for your continued prayers. Prayer is so powerful. God Bless, Erik's Family Angie Lewis Guest Posted: Mon Dec 05, 2005 9:16 am Post subject: West Edgecombe Baptist Church I was just made aware of this wonderful website. Thank you for sharing the information and Erik's story with so many. It is so wonderful to see God at work in your life. I am the pianist at West Edgecombe where Janet and Russ attend and a member of our Women's Fellowhip Group. Our group has been lifting Erik in our prayers for some time now. I am also related to Beth Sallee who was next to Erik's room in Greenville Rehab for some time. They have been through a journey much like your own. We will continue to pray for Erik's recovery and be in prayer that the Doctors will make the right decisions in terms of his future care and treatment. I also am in prayer for your continued peace as you face each new day. Love In Christ, Angie Lewis

December 1, 2005 - It's been a while

Hello Everyone! Yes . . . its been a while since we wrote. We have really been busy here! We finally were approved for special services for Erik and now have all of his therapies done in the home! YEAH!!!!!!!!!!!!!!!!!!!!!! We also started getting home nursing help - 12 hours per day - 7 days per week! This has truly been an answered prayer! It will take 2-3 nurses to cover the hours and so far we have met 2 wonderful people! Lynette has year of experience and Erik really seems to be calm with her. She knows how to care for him and knows about seizure symptoms and such which allows us to not worry when we cannot be looking at him constantly. Dawn came today and she will be working with us on Thursdays. Her daughter had an AVM that ruptured when she was 7. Today has been an encouraging day for us as her daughter is now doing great and has had a wonderful recovery. She was much worse than Erik and was older. We know Dawn was sent to us to remind us that God is in control and that He still plans to heal Erik completely. God is so good to us! Well, I know this is short but we wanted to let everyone know that we are doing okay here. Erik finished his antibiotic and now has some swelling around the incision site and has had a few seizures (not severe though). We are watching for any changes and are praying that this is not a sign of an infection. Please keep Erik and us in our prayers as we keep all of you in our prayers. We could not make it through all of this without GOD and YOU! Love to all, Erik's Family Guest Posted: Fri Dec 02, 2005 5:53 pm Post subject: Wendy, It was nice to see you on Friday under the circumstances. Erik Does look Good. Please Keep me updated on his progress whenever you get a chance to e-mail me. My e-mail is hokiefan1_27603@yahoo.com. I check it every day. Love, Jennifer

November 16, 2005 - Erik Updates

Posted: Wed Nov 16, 2005 10:08 am Post subject: 11/16 - Hello All! Hello Everyone! Just when we were about to send an email letting you know all was going fine, we hit a bump. All is okay though. Erik has had some vomiting over the past week or so and the surgery site had a little puffiness around it. We were watching this when last night he had a seizure. These things combined caused us to bring him in for a check. All of the tests look great and he seems to be doing fine. It just scared us a little! Please pray that the seizures will subside and that he will continue to move in the right direction. We hope to go home today and stay there for a while!!!!!! Love to all, Erik's Family Cheryl Brewer Guest Posted: Mon Nov 21, 2005 4:53 pm Post subject: Praying for all of you! Wendy-- I did not know any of this! Where have I been?!! I'm so sorry that I haven't known and been praying. I certainly will now, though! I will continue to read your updates so I can pray specifically for you all. Thanks for giving me the card about Erik when I saw you at Pizza Inn. Love and prayers, Cheryl Karen Sealey Guest Posted: Wed Nov 23, 2005 4:42 pm Post subject: Happy Thanksgiving!!!!!!!!!!!!!!!!!!!!!!!!! Hi Wendy, I wanted to let you know that every since I found out about Erik's condition that you all have constantly been on my mind & in my prayers. I hope that you all have a great Thanksgiving!!!!!! Afterall, we all have many things to be thankful for. I have to tell you that you guys have inspired me to grow more in my service to the lord. I too love; beieve in the power of prayer and know that god will take care of us all. I know that God will always take care of Erik no matter what. You two have a special bond with God for your strength in dealing with these obstacles that try to break you down and amazingly, giving up is never an option for you. God bless all of you!!!!!!!!!!!!!!!!!!!!!!!!!! Please let me know if you ever need a quick sitter for the children. I am here to help with any other thing that I may be able to help with. Much love to you all!!!!!!!!! Karen; Marie Sealey '); //--> Brigitte Specht Guest Posted: Sat Nov 26, 2005 11:09 am Post subject: You are in our thoughts and prayers href="http://erikmedlin.org/bb/posting.php?mode=quote Wendy and family, Funny how God works in mysterious ways. Every year we have a Christmas party and invite friends and family. My husband and I "adopt" a family in need and ask our guest to bring a present for the children of that family. Last year, we adopted a family that I work with that welcomed premature twins 3 months early (three weeks before Chrsitmas). This year, we were wondering how we would find a family that may need a little help with their shopping and Sara Belskie Self dropped me an email saying that she had the perfect family. YOU! We sent our evites out with this website attached to them and the Faith and Love that your family portrays has moved each and every one of us. We haven't met but we all are praying for Erik and your family. We are certain that you will get through each and every bump in the road b/c your love for God is tremendous! Merry Early Christmas~! '); //--> Ashley Collins Guest Posted: Wed Nov 30, 2005 12:40 am Post subject: prayers your way sending prayers your way...for a merry holiday season!

October 30, 2005 - Erik Updates

Wendy Guest Posted: Sun Oct 30, 2005 12:17 pm Post subject: 10/30 We are home! We are home! We came home last night and Erik and the rest of us had a good night of sleep. We are now going to work very hard on getting therapy for Erik and helping him get stronger. We start home therapy this week and we are excited about this. Erik is motivated by therapy so this will be really good for him. Please continue to pray for healing and strength for Erik and for this to be our last hospital stay! Love in Christ, Erik's Family Jennifer Mull Guest Posted: Mon Oct 31, 2005 12:24 pm Post subject: I am so Glad Erik is home and doing well. Keep up the good work Erik. Love, Jennifer Emily Ross Looney Guest Posted: Fri Nov 04, 2005 5:51 am Post subject: checking in Hey, Wendy! I finally got a chance to check out Erik's site; it looks amazing! I'm so glad that you guys made it home and I don't plan on seeing you for a while! Take care and call if you need anything! Love, Emily Kimmie's mom Guest Posted: Tue Nov 15, 2005 8:12 am Post subject: thank you so much Hi Wendy! I finally had a chance to check out Erik's site and read your story. I am so glad that I did. It's comforting to know that faith in God is so powerful, and we have done just that with Kimmie. Thank you for the gifts for Kimmie--she loves the purple clothes and is wearing them all of the time. I would like to attach a picture of her in the clothes for you, but don't think I can through this site. Do you have a home email? If you do, my email is mailto:mkgronlund@sbcglobal.net We got home from the Ronald McDonald house on Oct 26th. The radiation treatments went well and Kimmie only lost her hair. We're on a break now before the Chemotherapy begins (Nov 28) and Kimmie is getting ready for her 5th birthday (Nov 20). We pray that when then do her MRI during her first week of treatment, the tumor will have responded to the radiation. She's doing great! Her vision in her eye is better, but the facial muscles haven't come back yet. It's only been three months and I know I just need to give it time and prayer. We'll be traveling to Duluth, MN every three weeks for her Chemo and then have a two week break at home between. She's started pre-shool (the teacher comes to our house once every two weeks) and will be going to her ballet classes when she's up to it. It would be great to hear from you Wendy--and I'll be sure to show Kimmie Erik's pictures on this site. She asks about her friends in California often and misses them. Hope all is well--say hello to the famiky for us, and to the rest of the family. Love and prayers Margie; Kimmie, Roger; Melanie Gronlund

October 27, 2005 - Looking good!

Erik did fine! The doctor said that the shunt was "slow flowing" from the ventricles and that this was most likely the reason for his slow responses and sleepiness. PRAISE GOD FOR CONTINUING TO BLESS ERIK!!! He did have some seizure activity immediately following the surgery which is not uncommon. We will just pray this away!! He said the tubing had probably been developing build-up slowly but that we did the best thing by waiting to do surgery to allow the previous procedure(s) to heal. We are going to stay here for a few days and see how he does once he starts to wake up more. It is so exciting to think that all of Erik's "issues" have been addressed with and we pray that this will be his new beginning! We will keep you posted! Love in Christ, Erik's Family

October 27, 2005 - Shunt Revision for Erik

Hello Everyone! We are at Duke today for a shunt revision. We brought Erik in last night because he has been really sleepy and just not himself this week. His ventricles are still unsafely large so the decision was made to revise the shunt to hopefully assist the ventricles in getting to a safe size. The good news is that the infection appears to be under control and responding to the antibiotic!!!! YEAH!!!!!! Please pray that the shunt revision will make a huge difference in Erik's responsiveness and overall alertness. We really want this to be the reason he has not been himself. We will keep you posted and thanks in advance for your prayers . . . Erik's Family

October 21, 2005 - Things are going well...

Posted: Fri Oct 21, 2005 2:51 pm Post subject: 10/21/05 Things are going well . . . Hello all! Things are going well for Erik. We hope to go home today. He will remain on strong antibiotics for 6-8 weeks and then we will reaccess him at that time. Please pray that: 1) the antibiotics will successfully cleanse his body of the infection; 2) he will resume eating and drinking so the feeding pump is not necessary; 3) that Erik will be able to participate in therapy to get stronger every day; and 4) that we will easily develop a routine as we return home. It has been good to see the staff here at Duke. everyone has been happy to see how active Erik is now and to know that the AVM is taken care of. Thank you for continuing to lift our family up during this journey! Erik's Family

October 15, 2005 - He did well...

Hello everyone! Erik did well today. The results of the surgery are that a large abscess had formed at the incision site. They drained and cleaned this up and so far he is doing well and appears to be feeling better. It was a serious surgery and they had to go into the site where the AVM was removed on 9/8. All looked well and now we have to wait to see if the antibiotics will clear any residual infection-related problems up. Erik is now in the PICU at Duke Medical. The plan is to see how much the site drains and see if the fluid is infection free. Hopefully, we will get the "go ahead" to move to the floor tomorrow where we will remain for a few days. Probably to see if the abscess starts to form again or other complications. Dr George was great today and we are thankful that he is working with us during this critical time. God has been good to bring us to the medical staff and care that is best for Erik. Please pray for complete healing for Erik, for the shunt to function properly, and for him to remain infection free. Thanks to you all for your prayers and encouragement! Erik's Family

October 15, 2005 - We are at Duke

Hello Everyone! We are sending this from Duke Medical Center. Since Erik's last surgery, there has been concern with some fluid collection around and under the incision site and about the efficiency of the shunt. Each day, he has appeared to be slowly complaining more and more. He has been sleeping more each day, the fluid appears to be increasing, and he has appeared to be uncomfortable. Yesterday we had an appointment with neurology and they advised us to go to the ER for a neurosurgery evaluation. 12 hours later, we were admitted and in a room. The thought was that this morning they would perform a shunt replacement. Once we met with our neurosurgeon, he decided to look more closely at the fluid collection to see what it is: spinal fluid, blood, or infection. Once they determine this, they will either clean the area and/or revise the shunt. If there is infection, they plan to take care of that first and then in a few days consider replacing the shunt. They are not sure that the enlarged ventricles and the fluid collection are connected so it appears we may be dealing with 2 issues. We wanted to ask for your prayers for Erik. Pray that all will go well this hospital stay and that he will return or surpass his good/new baseline soon. He is still moving everything and more responsive. This hospital trip, he actually complains about things when the nurses are around which is good to see! We will write more when we can! Love in Christ, Erik's Family

"Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely will help you, surely I will withhold you with my righteous right hand." Isiah 41:10 NASB

October 11, 2005 - I'll be Praying daily for Erik & your family

Hi! My name is Carole Myers. I live in Greenwood, In. An email came through on our email prayer request from church. We attend Mt. Gilead Christian Church in Mooresville, In. I will add Erik & your family to my prayers that I pray every day. I read your whole story and it brought tears to my eyes. God is certainly there with you all the time! Be assured I will be praying. Carole

October 11, 2005 - Greetings!

Greetings Everyone! WOW! What a week! The BBQ on Saturday was great! It was so good to see our family and friends! Having so many of our prayer warriors under one roof was fun for us. We are so thankful to our church family for doing this for us. I don't know how people go through tough times without Christ and the love of a solid church family! PRAISE GOD that we have such a good one! Erik is hanging in here. We are having good and tough times but so far the good outweigh the tough. We have many doctor and therapy appointments set and are watching the function of the shunt closely. We are still not sure that it is working 100%. We don't want to do anything too soon though because many things are stable. Margot, Brigitte, and Nick all seem to be adjusting fine to all of us under one roof. It has always been interesting when Erik and I have been away. Whether it has been a day or so or a month, it is an adjustment for us all to be back together again. It is all fun to work through though! God defiantly works on each of us during periods of separation. We know he is shaping and growing us through it all and that is all we need to know to make it work! We know Christ remains in control and with us during Erik's recovery period. Please pray for stability for Erik and for the incision sight and the shunt to be in working order. Love to all, Erik's Family "I know the Lord is always with me. I will not be shaken, for He is right beside me. No wonder my heart is filled with joy, and my mouth shouts His praises! You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever." Psalms 16:8,9,11 NLT

October 9, 2005 - My heart and prayers go out to you

Wendy - I saw a BBS posting on Friday about the BBQ fund raiser and followed the link to read about what's been going on. My heart goes out to you and your family. I'll be praying for Erik's full recovery! With love, Jodi Snare

October 7, 2005 - My prayers are with you

My name is Janet Cooper and I just heard about your son today from a common acquaintance. My prayers are with you and your family. Keep your faith because I too believe God works in mysterious ways. God Bless, Janet Cooper

October 4, 2005 - We are adjusting!

Hello Everyone! Well, things are going well here for us. We are "re-acquainting" with each other and seem to have been able to pick right back up where we left off! It is great to have everyone together again! The past few days have been spent making doctor's appointments, filling prescriptions, making therapy appointments, setting up meetings with agencies for evaluations, and gaining status on equipment we ordered for Erik. Whew! keeping up with it all is a job in itself! We are lucky to have some options for Erik with respect to therapy. Please pray that we will choose and have available to us the therapy plan that will best suit and advance him! Also, please continue to pray for stability for Erik. The first night home was great. The second night, he went to bed around 3. Last night, we were up with Nick some so we are not sure if this woke Erik up or if he would have woke up on his own. Hopefully, tonight everyone will sleep soundly! Erik has been sleeping more than he was in CA. We want to allow time for the time changes and the "jet lag" to wear off before jumping to conclusions about why he is sleeping so much. One reason we remained in CA for a week after hospital discharge was because we were not certain that all was well with his shunt. We do know that it is working but we are not sure if it is efficient enough. We still are not sure. He is still moving around alot and all but just sleeping alot and unsettled at night. We will see. Just pray for things to settle down! Well, take care and we will update you more as things progress! Goodnight from our home in NC . . . Erik's Family

October 2, 2005 - Think about this...

Hello Everyone! We have been trying to rest today and get some "last minute" errands run. YEAH - tomorrow we head home to NC! As I was heading down one of the main roads here that I traveled on quite often, I thought about something that I wanted to share. It seems that each time I traveled this particular road, I was in a different state of mind. Sometimes elated, sometimes in tears, sometimes happy, sometimes scared,sometimes lonely - the variations are numerous. Every day no matter where I was, my moods could be anywhere and could easily be impacted by my interactions and those around me. What I also realized is that there have been many opportunities for people to be kind or mean to me while I was "emotionally fragile" so to speak. I have been fortunate in that I have had many small blessings. Here are a few that come to mind: - The smile from the McDonald's staff member The familiar faces that greeted me when I entered the hospital each day - The person who waited for me or held the elevator - The smile from the person in the car next to me - The person who let me change lanes at the last minute (this person seemed to be in a hurry but happily let me over anyway) - The person who asked how I was - out of the blue - The card I received in the mail letting me know I was not forgotten - The person who made my children smile and laugh when I was not able to do this - The voice mail message on the room phone that I received after a difficult day at the hospital - The smile from a child who appeared weary from medical treatment - The unrequested ice cold drink from a nurse Kind words and a little time from someone famous after a trying day - The person who held the door for me - The person who motioned to the parking space they were about to vacate for me. None of these things were time consuming or costly. All of thee people could have looked the other way or went about their business but instead, chose to see me. All of these people put me - unknown to them - a stranger going through a tough time - before their needs for such a brief moment. I call these people "God's angels" because I know He sent them to me to provide just what I needed at the time I needed it. It is amazing how these little things really picked me up and made things better. Many times we wonder what our purpose is for the day. I realize after my time here that sometimes it is something big and sometimes it is something small that we may not even notice. I have learned a valuable lesson which is that we each should be sure we make every interaction with every person positive. You never know when something small you do can really make you the "angel" for someone else. Take care and we will email more from NC . . . Wendy and Erik

September 29, 2005 - Prayer for Erik from Chip Riggsbee

I have been a friend of Lee Melvin since we went through high school together. She sent out an email for prayer for little Erik. I am so very sorry about what's happened in little Erik's short life so far but His creator is watching out for His child and I believe that He will give Erik a full life to enjoy His blessings. I also thank God for blessing you, his parents, with His strength, wisdom, and peace during the time Erik has been ill. May I give you my testiomony? The Lord heals. I know. In 1999 I contracted a spinal virus that was eating up my vertebrae and turning them to oatmeal. This left me in excruciating pain and virtually paralyzed. 3 spinal surgeries were totally unsucessful. By God's leading a Christian couple that my wife and I are friends with recommended an orthopedic surgeon in Charlotte that had operated on the husband's back wih excellent results. We went to the surgeon and he did two surgeries on me and after 3 years of being nearly paralyzed I began to be able to go to physical therapy and to make a long story short the Lord healed me to the point where I could attend Bible College. I received my Associate of Theology with an emphasis in ministry degree this past May. I graduated summa cum laude, and #1 in my class with a 3.99 GPA (all the glory goes to God for this). I don't tell you these things to brag on myself but to give glory to God for the powerful way he can and does turn situations around. He totally turned mine around and I am confident He's on the way to doing the same for Erik. I will put Erik on our church's prayer chain and he will continue to receive intercessory prayer from us. I'll also continue to follow his story which has touched me deeply. I am the parent of two children and while I can't feel what you're feeling because everyone's feelings are different I can imagine how I would cling to the Lord as you have during your child's illness. May God richly bless you and your wonderful family now and in the future. Chip Rigsbee Pawleys Island, SC

September 29, 2005 - Erik updates

Hello All! We are adjusting to life outside of the hospital and all is going well. We have an appointment with Erik's medical team tomorrow morning and then the goal is to come home on Saturday! YEAH!!! Many times we sit and think about how quickly things have changes over the past 2 years. One minute things are going great and the next minute, things have gone another direction. This also has worked in reverse - one minute things are not going well and then there is an amazing impovement. One thing has been steady - God has always been with us and has held us through it all. It seems like the Footprints poem many of us have read has been our experience. When things have been the hardest, we have laid it at God's feet and he has picked us up in various ways and let us know he is with us through it all. We still have quite a road ahead of us but know that we are being faithful in our walk with God. This is what God asks us to do. He wants us to rely on him, believe in his power, and trust him with everything. Many times people say to us they cannot imagine how we make it through tough times leaning on God. Our experience has been that these are the times we have found it easiest to do this. Our job going forward will be to maintain our faith, trust and hope in God while we are going through what may seem to be "easier times". This may prove to be harder than anything we have been through thus far. We will continue to take and celebrate it all - day by day. We are excited to let you know about a web site that has been set up to help keep everyone informed of Erik's progress. It is: http://erikmedlin.org. Check it out! Thanks to our friends for setting this up for us. We certaintly have not made time to do this but we think it is an awesome thing!!!!!!!!!!!! Also, for those of you who are local . . . don't forget about the BBQ October 8th at our church - Good Hope Baptist. We will list details below. There will also be a carnival that day for the kids from 4-7pm and at 7pm a local gospel group will be singing. It should be lots of fun! This is a fundraiser to help raise money to cover Erik's medical expenses. Love in Christ! Erik's Family

September 25, 2005 - We're out...

Hello Everyone! I am sending this email from the Ronald McDonald House . . . with Erik!!!!!!!! We are here for a few days. We have a few appointments this week and hopefully if all goes well, we will be coming home on Friday! It is so exciting to have Erik out of the hospital. Well, I know this is a brief email but I have a busy little man to entertain now so I need to go. Love in Christ, Wendy

September 22, 2005 The roller coaster

Hello Everyone! Just a quick update for everyone. It has been real up-and-down lately. Erik was doing well and then he started seizing some, sleeping more than usual, his heart rate was elevated, and his incision was leaking. Whew! Just when you think you are going forward, you go backwards. We have ridden this "roller coaster" before so our reaction is to tighten our seat belts and pray! Well, Blockbuster has helped me some too! I rented some movies to watch and that helps time pass! As many of you know, going forwards and backwards is a part of the healing process and our journey with Erik. The enemy just can't give up! Just when he tries to get to us though, it causes us to rely and trust God even more than before! With your help through prayer, we hope to send the enemy running and screaming! All of this is real complicated which reminds us that we are fortunate to be where we are with the medical care available to us. Each segment of every day is unique. Erik is still doing fine and able to eat, move around, look around, and interact but he seems tired or like he has a headache. Hopefully today will be a GREAT day. Please pray for physical healing for Erik, continued restoration, and peace for our family during this time of separation! Love in Christ, Erik's Family

September 17, 2005 - Keep the prayers coming

Hello all! Yes - it is a late night here in CA. It has been an "off" day for us. Erik has experienced some seizure like activity off and on since noon and he has been acting like he is not feeling well. We are talking to the doctors, observing him, and praying that we will quickly figure out the cause of this! Please keep Erik in your prayers. Pray that the doctors will be given the knowledge to do the right things to figure this out and that things improve! Love in Christ, Erik's Family

September 15, 2005 - We are moving THROUGH this time

Hello Everyone! Things are moving so fast here in CA! This is GREAT news and God's work! Each day, Erik appears to be progressing. Today, he is making streams of sounds which is something we have not heard in a VERY, VERY, VERY long time! It is great to hear his voice. He is participating in therapy and appears to be motivated to move around. He actually has been awake most of the day. The other thing he is doing that is neat to see is that he complains when we leave him or when he wants to be held or fed. He has not been this responsive in months. PRAISE GOD! There are no words that can describe how AWESOME God has been. Erik is definantly touching many and is a testimony of God's amazing power. We have met some wonderful people here and are sure our trip here has been puropseful in many ways. Many that we may never directly know about. Please continue to pray for stability for Erik and for his body to be fully restored. Love in Christ, Erik's Family

September 12, 2005 - Erik's progressing

Hello Everyone! Hope you each had enjoyable weekends! It has been a pleasantly uneventful weekend for us here in CA. Erik appears to be a little better every day. Today we fed him some. He did fine but is still tired and weak. He was nice and awake more and this was good to see. Margot, Brigitte and Nick all made it to CA fine. We had fun today riding on an old steam engine through a redwood tree forest. Nick was excited to be riding on a train like Thomas. Thank you for all of the prayers. Please continue to pray for complete restoration for Erik. Love in Christ, Erik's Family

September 9, 2005 - Faith made it real!

Greetings from CA! Well, it has been a busy day for Master Erik! We started at 11am and are still going now at 11:30pm. It has been a good day though. There were 3 main steps. First the angiogram. This was great. The doctor came out from the procedure to let us know that the blood flow to and from Erik's brain was much improved from prior to the last procedure. PRAISE GOD!!!!!!!!!!! This improvement also allowed for the doctors to remove the large mass of tissue and blood AS WELL AS the smaller one located last week. This was the second phase of treatment today. The procedure went well and Erik remained stable throughout the procedure. The mass they removed was 6cm in size!!!! This is 30% larger than expected. He should experience some relief as far as pressure goes from getting this out! The third phase was to perform an angiogram to look at everything. All was good. The ventricles were slightly enlarged but this could be due to the recent MRIs changing the setting. We will see because he was just taken down for a CT to check all of this. Prayer requests: 1) Our understanding is that the second day after a procedure like Erik had is the day there is more swelling. In Erik, this can do many things such as increase or cause seizure activity. Please pray for stability so he does not start to seize. He has been 10 days without any seizures and we want this to continue!!!! 2) Please pray for COMPLETE restoration to come quickly for Erik. 3) Please pray that Erik will remain "complication free". 4) Please pray for the nurses and physicians caring for Erik to be attentive and on high alert to any changes in him. 5) Pray for a safe trip for the kids on Saturday to CA. 6) Please pray for those who read this and those who are in the world who are not Christians. Experiencing all of this with Erik has really made us realize how lost people must feel without Christ in their lives. Our prayer is that Erik's trials will be for a purpose - to reach those who are not Christians and bring them to salvation!!!!!!!!!!!!! More than anything, please remember to thank God for answering our sincere prayers for healing in Erik. It is so powerful to be experiencing a miracle made possible ONLY through God! The physicians all but said this to me today which was a blesing to see the witness Erik has had. Today we have seen the Heavens open up and a miracle delivered! PRAISE GOD!!!!!!!!!!! Love in Christ, Erik's Family

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

August 29, 2005 - Two steps forward and one step back

Hello everyone! Today has been a busy day. Erik had an uneventful night and seemed to have rested well. Today around 1:30, they moved him to the floor. All was well for about say 30 minutes which is when he had a seizure. At this point, he moved to intermediate intensive care which is between intensive care and the floor – basically one-on-one nursing on the floor. He got over the seizure just to have another around 3:30. And another at 4:30. At this point, he moved back to intensive care. This is where he needs to be right now so they can keep a closer eye on him. We understand that after a procedure like Erik had, it is not uncommon to have some swelling of the brain tissue and/or an increase in seizure activity. We have an EEG scheduled for tomorrow which is good. We know that this is how it goes – 2 steps forward and 1 step back. Erik appears to have taken MANY steps forward so far and we remain faithful and confident that God is continuing to heal him in ways we cannot see. Erik was still moving around quite a bit today and alert and interested in his surroundings so this was good. His body just appears to need a little more “rest time” right now. The family head home tomorrow so pray for their trip to go well and for Erik to have a day filled with positive events! The enemy still is trying but we know Erik is protected by the blood of God, the Holy Spirit, and your powerful prayers. You cannot imagine the level of strength this gives us throughout the day. God bless each of you!!! Erik's Family

August 28, 2005 - Erik is moving!

Seriously, he is moving!!! He woke up around 11:00 am and as we walked into the room he was moving his arms and looking around. Wendy’s vision of Erik’s arms moving was presented to us almost in exact detail. We were both grinning from ear to ear. He was looking around the room. It was a glorious site. We showed Erik the picture of our family we had taken last week and he focused on it for at least a minute. He kept rubbing his head and trying to take his oxygen tube out of his nose. It really was a great thing to see. He has not done any of this for months. He did have some possible seizure activity right before he received his 12:00 medicines and the decision was made to give him his regular medications and a boost of another medicine to ensure there was no recurring activity for the remainder of the day. We need to keep things settled during this adjustment time for him. His blood pressure stabilized last night and remained stable throughout the day. This was his body and God’s work because no medications were given to regulate any of this. We also learned today that his CT scan came back good and that his ventricles are actually smaller than they have been in the past. This too is answered prayer!! Please take time to thank God specifically for the miracles he is showing in Erik. Also continue to lift Erik up for the next 2 days. He is a good and faithful God and loves us very much. We are meeting new people and sharing God’s love here so pray for us to continue to share Erik’s story and God’s love for His glory. More progress to come . . . Erik's Family

August 27, 2005 - News from CA

Greetings from CA!!!! It has been an interesting day! Erik’s procedure started around 4:00 instead of 11:30. This was okay though because we used this time to talk with some of the other doctors we will be working with over the next few weeks. We were also able to set up an appointment for an EEG on Monday to get things started looking at the neurology side. As for tonight, around 8:15, the doctors came out and told us they were done. They were surprised at what they saw once they looked at Erik through the angiogram – his anatomy is very complex. We were once again told that they had never seen an anatomy like Erik’s. This being said, they had to adjust their treatment plan quickly. They were extremely pleased with the results. They were able to block off the entire problem area which is more that they expected to do in one procedure. There may still be some areas that need to be addressed but they are on the vein side instead of the a rtery side. We will have to let time pass before we see if it will be necessary to address this. They also said they don’t expect to have to do this again and that if they address the vein side, it will most likely be in 3 weeks or so. All is up in the air though depending on how he comes out of this the next few days. For now, Erik is highly critical for the next 72 hours. He may be the same, better, or he could experience excessive clotting or a bleed – both could be really bad for him. They will allow him to start waking up some tomorrow to see how he is doing. There is an entirely new blood flow pattern established now and we just need to pray that Erik’s body will accept this new pattern. Everyone here is very interested in Erik and his prognosis which we now are optimistic that it has a good chance of improving. We also learned today that much of the weakness and inconsistencies of abilities Erik has been experiencing may have been due to the blood flow issues and not necessarily the medicine alone like we suspected. We can’t know for sure but we are asking for prayers to specifically be for Erik’s body to positively adjust to the new blood flow pattern over the next 72 hours and that when he awakens he will show physical signs that there is improvement. The CT scan immediately following the procedure showed no signs of a bleed and the doctors appeared greatly pleased with this. Right after we talked with the physician, we had an image of Erik waking up with his arms moving around and his eyes open and looking around. It was like a dream without sleeping. Perhaps this was God showing us what is to come! Please pray for Margot, Brigitte and Nick to continue doing well and for Jaymee and Doug who are caring for them to be rested and strengthened during this time of a temporarily extended family! Please also continue to pray for us and the physicians and staff here who have just been wonderful! We appreciate you continuing to lift us up in prayer and ask that you help us continue to move through this until we see the end results of God’s manifestation of healing in Erik! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Erik's Family

August 25, 2005 - Stanford Day 2

Hello All, The weather in California is wonderful. Sunny and mid 70’s during the day and low 60’s at night. Absolutely wonderful. The hospital is huge and the people are very nice. We are all set for the procedure tomorrow. We discussed the procedure with the doctors today. We planned to send an email tomorrow but decided we had some specific prayer requests for Erik. Following the procedure, the plan is for Erik to stay in Intensive Care for the first 24 to 48 hours and then send him to a regular room for a day of observation before being discharged. Because of the nature of Erik’s condition, he has an extremely high risk for a brain bleed the first 48 hours post procedure. This is why he will have more intensive care in the ICU. The doctors said today that they do not know how much of a change we can expect from Erik since some of the past set backs could be permanent. They basically do not know if we are addressing the issue of the AVM in time to regain what he has lost over the past 9-12 months. We have been praying for a miracle. We can’t wait to see how God brings us through this but it is certainly difficult to wait it out! Pray for Erik to experience full recovery! The last time, and only time, Erik had this procedure resulted in Erik suffering a stroke on December 11, 2003. Please pray for us to have peace and faith and for God to manifest healing in Erik! Prayer is so powerful. We know that. We hope that every time you think of Erik tomorrow that you will say a prayer for him and our family. I am sure we will have good news to celebrate this weekend. We already have good news to celebrate!! Prayers have been answered. We visited the Ronald McDonald House today after we left the hospital and learned that they had just left us a voicemail saying that they have a room available for us. THANK YOU GOD!!! We took a tour of the house and it is absolutely awesome. It’s very clean and it has 47 beds. Everyone has their own room. They have 6 TV/Lounge rooms to relax in and a huge kitchen with a huge frig and freezer. We also have our own small (dorm like) frig in the kitchen area. Here is our new address and telephone number. Erik and Wendy Medlin C/O Ronald McDonald House Room 209 520 Sand Hill Road Palo Alto, CA 94304 Telephone # 650-470-6000 (This is the main line and then you will need to ask for Wendy or room 209) Thank you in advance for your prayers tomorrow. We have some great prayer warriors and we know great things will happen. God Bless you all!!! Erik's Family

August 24, 2005 - Getting to California

We had a really good experience this morning flying to Dallas, TX and then to San Jose, CA. Everyone with American Airlines was great! Our arrival at the hotel was somewhat disappointing though. As many of you know, we have been trying to make arrangements to stay at the Ronld McDonald house here. Last week, we were told that they did not have a room for us but that they would give us the names of hotels that would give us a discount until hopefully a room opened up at the Ronald McDonald house. The hotel we initially chose and made a reservation with did not have a microwave or refrigerator in the room or a bath tub like we were originally told they would have. We need this for Erik - especially since we will be here for a while. Anyway, the search of the other hotels was also disappointing. Same issues as before or in an area that did not appear to be quiet or safe like we had hoped. The last on the search was a Hampton Inn in Mountain View, CA which is about 6 minutes from the hospital. They had an opening, a refrigerator, a disabled accessible room available and they were REALLY nice! YEAH! The General Manager was so helpful and even gave us a free night for tonight. So here we are until the Ronald McDonald House has an opening. It could be tomorrow, a few weeks, or not at all when a room opens up. With one of the hotels we went to, there was already a family from the Ronald McDonald house there who is also waiting for a room so who knows how many more may be ahead of us. We have been blessed to have met so many people just today, many of whom will now also be praying for Erik through this experience. We know we are here for a reason and can't wait to see who else God puts in our path. Thanks to all of you who have been lifting us up in prayer today especially. Tomorrow is the pre-op appointment and Friday is the first procedure. The procedure is high risk for Erik so please pray us, the doctors, and nurses through this! Love in Christ, Erik's Family

July 31, 2005 - Erik's Story

Twin Boys - July 2002 Our family welcomed twin boys into our lives on June 11, 2002. We were very excited since they were healthy and would only need to remain in the hospital a short time before coming home. Both boys, Erik and Nick, developed and grew great from birth. They were both active, talkative, walking and busy boys! First Procedure - August 2003 The oldest twin, Erik, however was larger and his head seemed to be growing at a faster rate than it should. As such, the decision was to conduct a CT scan at 12 months to ensure that all was okay. There were no signs of developmental or other delays or problems so we were not too worried. The CT scan was done on July 31, 03. After the scan, we were told that he had hydrocephalus and an arteriovenous malformation (AVM) resulting from a congenital defect. As you can imagine, we were blown away by this news. The immediate concern was the hydrocephalus which was caused by the position of the 4cm (huge) AVM which interrupted the normal flow of spinal fluid. As such, we went to Duke University Medical Center (DUMC) in Durham NC for treatment and were told that an immediate shunt insertion needed to take place to help with this. This was done on August 8, 2003. All went fine during the procedure. The decision was made to embolize the AVM in hopes to direct blood flow away from this area and create a more normal and functional blood flow pattern. On December 11, 2003, the first of 6-8 procedures took place. During the procedure, there was a complication in which glue separated from the surgical tool. The glue then flowed towards the right side of the brain causing a stroke with a left side of the body deficit. We were devastated. Here we had gone from an active, curious, delightful child to a child that had to relearn everything – speech, sitting up, eating, walking, - EVERYTHING! We dealt with it and by March of 2004, Erik had started walking and talking again. We were once again thankful and excited. Shunt Adjustments - 2004 Around the end of May of 2004, we noticed that Erik was leaning a lot. He also started drooling quite a bit, and he did not seem to be able to stand up and get around like he had done since the stroke. We took him to the doctor for their opinion and on May 28, 2004 the shunt was replaced. On July 7, 2004, we took Erik back to DUMC because he was leaning a lot again and not sleeping well. This time, they put a new shunt in that could be manipulated with a magnet instead of through surgery. We so hoped that this would make it easier to get things settled for Erik. This procedure was followed by non-surgical adjustments on 7/19/04, 8/29/04, and 12/18/04. God is in Control During these times of Emergency Room visits and such, there would be specific moments where we would naturally start to panic. It was during these times when God would reach down from heaven and reassure us. He may just send an overwhelming sense of peace or He my have decided to send someone to lift us up. HE NEVER FAILED to do this for us. We are thankful for Erik because if our family had not been through this journey, we may never have experienced peace that you can actually feel move through your body. It is awesome! The first time this was experienced was when Erik was initially diagnosed. We were in a restaurant with friends when my (Mom) heart started racing and I felt like I couldn't breathe. I told God that something was wrong because a mother was not supposed to have to deal with this. He could not have intended for this to work this way. At that very moment, I asked God to relieve me of this feeling and allow me to take the role of helper during this time. I said that I knew He was the Great Physician and asked Him to just show us where to go and lead our hearts. He has faithfully done this for us. People ask us how we make it through. This is the answer. God is doing the work and we are just watching him work and watching his testimony be created. Sometimes our job is to comfort Erik. Sometimes we share Christ with other families. Sometimes we pray for Erik and other children. One of our prayers before all of this began was for God to place us around different people we could witness to. We also asked Him to teach us how to be better witnesses. God has defiantly answered our prayer! More Problems - October 2004 Starting October, 2004, Erik also began to experience Myclonis or Myoclonic Jerks – what seemed like an exaggerated startle. We went to the neurologist for EEGs and evaluations. They ruled out seizures and said that some kids just do this after brain trauma and not to worry. January, 2005, Erik started having trouble swallowing (eating) and he started drooling a lot. We started a series of tests to see if we could understand what was going on and why Erik seemed to be regressing instead of progressing. Since the stroke, we had Erik in intensive therapy and he appeared to be motivated to want to get up and go but he just could not get his body to cooperate. We went to DUMC and learned that he also has a chiari malformation which puts pressure on the cranial nerves and could be causing the balance and oral tone issues. MRI’s were done in February, 2005 to determine of it was safe to perform a procedure to correct this problem for Erik. The decision was made early April to replace the shunt one more time to be sure this was not the problem before going through with the complex chiari surgery. The shunt revision was performed on April11, 2005. All went well and after about a week, we started to notice improvements in Erik’s abilities and responsiveness. We were encouraged. Grand Mal Seizure - April 2005 On April 25, 2005, everything changed. We found Erik at 6:55am lying in his bed in a pool of drool about the size of a dinner plate. He was experiencing a Grand Mal Seizure. We called 911 and he was transported to DUMC for treatment. We had been fortunate not to have had to experience "emergencies" with Erik so this all was a new experience for us. When we arrived at DUMC, I stepped out of the ambulance and felt light headed. The driver asked me if I was okay. I said that when I was but I did not know how "okay" I was until I turned around and saw 2 nurses standing at the ER door with arms outstretched. it was like God was telling me, "I've got you." I still get chill bumps and teary eyes when I think of this moment. I was immediately comforted. Their outstretched arms were God's arms. God Sent His Worker To Do His Work While Erik was seizing, the neurologist left around 2pm to discuss Erik with a colleague. Shortly after he left he returned with Dr. William Gallentine - a fellow church member from Good Hope Baptist Church! We had met Dr. Gallentine and his wife at a progressive dinner in December and knew when he arrived that God sent him to help in our case. We immediately felt a sense of peace when Dr. Gallentine arrived. we knew he was a Christian and that he would do all he could to help. At around 5pm, Erik ceased seizing. What a long day for all involved. The physicians at DUMC were awesome. They were very attentive to Erik and us and gave us hugs or words of encouragement throughout the day. By the time Erik awoke from the coma they put him in to stop the seizure, he had experienced so much that he had trauma on the left side of the brain leaving him with a deficit on the right side of the body. He laid in the Intensive Care Unit (ICU) for 10 plus days during which time we were not given much hope. If he did make it, they said he would most likely not be himself at all. During this time, we had the opportunity to meet many great physicians who really were not optimistic. We were told that the part of the brain impacted was the part that controlled his personality, emotions, and really the things that made him who he is. We encouraged the physicians to do all that they could but reiterated that we knew the Great Physician and he was ultimately in control. Comfort from God - May 2005 The first week of May, 2005, Erik started waking up good, recognizing his family, smiling and almost laughing. YES - I said smiling!!! He smiled at his sister and opened his eyes when he was still in a semi-coma state and this we know was a sign from God reminding us that he was still with us. Although he had not regained the skill of speaking since the stroke on 2003, he was making some sounds and such before the seizure and started making some of these again. We were so excited! Early May, he was transported to Greenville, NC for in-patient rehabilitation. This was hard on our family since we already had experienced so much separation but we knew we needed to take advantage of the opportunity to help Erik. Shortly after we were there, Erik started vomiting followed by high fevers. After a week or so of every test available, and I do mean every test available, he started seizing again. This was also the day that a dear friend of ours who had been trough hospitalizations and illness with his child came to visit us in Greenville, NC from Raleigh, NC. This visit was not by chance! God placed him there to get through this ordeal with us. He helped pray us through this and stayed with us until Erik and I left for DUMC. At DUMC Erik's symptoms and behaviors were determined to be seizures. On the way back from Greenville, NC, the ambulance and I (Mom) were separated. It just appeared to vanish in front of my eyes. How could this happen I pleaded! Due to exhaustion and concern I did not even know where I was. I needed to be with the ambulance when we arrived to see Erik and make sure I was there. I started reading signs because although I had traveled this was many times, I had no idea where I was. The ambulance no doubt would beat me there but knowing this, I prayed HARD for it to all work out. As I was on the phone, we approached the 40/540 junction. Just like it had fallen from heaven, the ambulance appeared right in front of me. This did not seem possible since it was going faster than normal and it was on a shorter route. GOD WAS IN CONTROL!!!! At DUMC, Erik's medications were increased and although the seizures ceased, he became less interactive and responsive due to this. No More Options? - June 2005 June 14, 2005, Erik started having seizures and not acting like himself. We ended up taking him to the hospital and learned that he had a brain bleed into his ventricles. We were devastated since we had been told that once this started, things would be difficult for Erik. While in ICU, we were told that doing anything else for Erik was too risky and that there was nothing else that could be done except watch him and make him comfortable when things arose. We were numb. How would we deal with this? How could we prepare the other children? Should we attempt to prepare them at all or just wait to see how things progressed? During this time of shock, we decided to completely rely on our Faith and God and try to enjoy our family. Well, God sent us another direction because our friends started searching for other treatment options. There had been a woman that I had seen at DUMC many times over the years. I was drawn to her but did not know why. Finally, the day after (probably less than 12 hours from when we made the decision to totally as God to lead us), she stepped off of the elevator right in front of us. We started talking and learned that her son Quintez (who is now 12) started experiencing the same regression as Erik around the age of 4. What? We couldn't believe it! We knew there was another case at DUMC similar to Erik but the fact that God placed us together was awesome. Quintez went through the same things - AVM diagnosis, seizures, regression of skills, bleeds, etc. It was amazing how alike their illnesses were. She said she had been told the same thing about Quintez. That there was nothing that could be done for him. Teresa suggested that we send Erik's films to Stanford University Medical Center (SUMC) for review. Why not, we said! We felt like God was guiding us. We prayed hard that he was. On to Stanford, California - August 2005 We have a clinic visit planned for August 25, 2005 and the first of a series of procedures set for August 26, 2005. We plan to remain in CA for 4-6 weeks while we get through the procedures. This again will be SO difficult for our family but we know this feels like the right thing to do for Erik and our family. Wendy August 3, 2005 www.lpch.org/clinicalSpecialtiesServices/COE/BrainBehavior/Neurosurgery/vascularDisorders.html">Info about Stanford Children’s Hospital On July 20th (Margot's birthday) we received a check in the mail from the love offering (that we had heard was set up through our church family). We were touched and pleased and set this aside for later planning to figure out which medical bills to apply it to. Probably 3 hours later, Stanford called and said that they had reviewed the files and were interested in helping Erik out. They said they had not seen a case like Erik's and really thought they could help him. We were blown away. After months of being told there was nothing that could be done and/or that no one would touch his case because he was such a high risk, this was wonderful news. We began looking into making arrangements and verifying our insurance coverage. We felt this was the right thing to do because the first thing we would have said would have been that we couldn't afford to go but God had already shown us 3 hours before that he was going to provide for us. That was Wednesday. Literally the following Friday, a friend called and said he would do whatever he could to help us out and he was able to get really good rates for flights for us. Things were working out. Next, friends from Quintiles called and said they had pulled their miles together and wanted to send the family out for a visit. This was awesome. Another answered prayer because I (Mom) had prayed for there to be a way for them to come out or for God to make the time fly by. He has done both. Insurance Concerns The Thursday before we were leaving the following Wednesday, our insurance carrier called to tell that the medical care at Stanford would not be covered under our plan. Keep in mind that the first thing I did was get authorization for "out of area" coverage. I was floored for about 10 seconds. Then I just literally and completely gave it to God to handle. I said that we were going and that He just needed to make a way for this to be covered. We also received a call that the Ronald McDonald house did not have an opening for us. Then the most amazing thing happened, we did not worry about this all weekend. It did come to mind but just as a passing thought. The following Monday, we were told that it was all covered. It was like God just wanted to make sure we were going to totally rely on Him. We did. We came here with 3 consecutive Friday appointments. After the first appointment, the doctor came out and said the most amazing thing. That was, "we occluded the entire thing." We were blown away. He said Erik was fine (and not gone from us as we had been told this would happen if the mass was completely occluded). Amazing. The next morning, we walked into Erik's room and he was moving all over the place, making sounds, trying to pull his nose tubes out. It was amazing and even the doctor's were blown away. Satan was not through trying though. Sunday Erik started seizing and for about a week his ammonia levels were dangerously high. The Great Physician This ended with a medication change and for a week, all was going well. The doctor then said he wanted to take the mass along with another small area of concern out. We agreed to do this and this was done on 9/8/05. The mass ended up being far larger than expected - 6cm. We thought at most it was 4cm. Erik has been doing so well since then. The doctors are really amazed. We tell them repeatedly that they are the tools and God is the Great Physician. They appear to agree. Every day, Erik seems to be doing better and better. He even complained today when we left. This was hard for us but when you have not heard your child's voice for so long, it was music to our ears. It was also another sign that he is aware of more than we know. The nurse we had today told us that she enjoyed being there today because as the different doctors came in in the morning, they were all amazed at Erik's progress. We were not there yet and the nurse we had did not know Erik. She said they all were impressed with how well he is recovering. Improving Daily Erik continued to improve. We had 10 days "seizure free" and then his incision site began to leak, he started to collect fluid at the incision site, and he started having seizures. This was so frustrating! His medications were increased and surgery to revise the shunt was considered. We ended up leaving it alone because a surgery this close to the other surgery could create other problems. Not a congenitial defect. We planned to meet with genetics to understand more about Erik'sconditionn but were told this was not necessary. We were pleased to learn that the physicians believe Erik's condition was acquired and not congenital. He apparently fits the profile of a child who was developing like any typical child until a year or so of life and then contracted a virus or bacteria that settled in his system and could not work itself out. This is when the AVM or distal fistula formed. This was good news as we were in hopes that this was not something that would be passed to other generations. Leaving Lucille Salter Packard Medical September 25, 2005 we left Lucille Packard and headed to the Ronald McDonald House in Palo Alto for a week of adjustment. All went well and we go home safely. The flight home went well and we attempted to establish a schedule/routine. It was so good to be home and together as a family under our own roof! The enemy is still trying to deter us. All was going well but Erik appeared to be sleeping more and less responsive. This concerned us. We wondered if it was the shunt, jet lag, post surgery recovery, or any of a number of other things that could be going on. The 2 weeks that followed were trying. Erik would wake up sweating, was sleeping more than usual, tired easily, had a day or so with a low grade fever, vomited one day, and just was not himself. We packed our bags for the hospital on Sunday but did not take him to Duke until the following Friday after 2 weeks of "home time". He just was not presenting with consistent or continuing issues. At Duke Medical again It was good to see our friends at Duke - although we would have preferred to have seen them outside of the hospital! We discovered that he had a collection of infection, fluid, and as our neurosurgeon put it, "junk" around the incision site. They cleaned it out and are waiting to see how things settle before looking at the shunt again. The thought is that the shunt is working okay and that his symptoms were the result of a contained infection. We were so glad we took him in. It is so difficult to know when something is wrong because he just does not complain. God always guides us as we ask Him to do. He is so good to us! We headed home a week later in hopes that all would settle. Returning to Duke After a week at home, Erik began sleeping again and started drooling some. We called our physicians and they advised us to come in for evaluation. A CT scan was conducted and his ventricles were enlarged. The decision was made to revise the shunt. After the surgery, Doctor George informed us that the shunt was slow flowing and that the revision was a good decision. We are in hopes that this will get Erik back on track. Our desire is to stay out of the hospital through the winter season when colds, viruses, and the flu are more likely to be present. Hopefully we will be going home October 29, 2005.