February 23, 2010 - News and Prayer Request

Hello! What a time we have been having! We have had both good news and concerns raised over the past few days and we want to share these with you. First . . . We went for Erik's Botox appointment last week (2/17) and on the way to the appointment Erik began to have a seizure. The seizure continued to the point where we had to pull off of the road to administer emergency medication. We hate to have to do this because it sedates him for 2 days or so. The good news though is that he did not react to the Botox at all! Like we shared, Botox is quick but really painful. We figured God just did not want him to be uncomfortable! We would have preferred no seizure though! He did get the Botox and we can already see some improvement. We did get confirmation that there is housing on the first floor of a facility near the center. One problem we encountered last trip was that many of the place did not have elevators or first floor housing which made them less than ideal for us because of the wheelchair. We are working now to set up things with the facility. It is also only ~ 1/2 mile from the center so we are hoping we will be able to walk to and from at least one of his daily treatments if not both. We also had an AWESOME surprise on Sunday. We were approached by a couple in our Sunday School class about a ramp for our home for Erik. Apparently God placed us in a Sunday School class with a member who has built wheelchair ramps! We were blown away by this and truly did not know how to respond. We have not even been praying for this lately! Prayer focus has been elsewhere! God has a way of doing this for us. We have to remember that He knows our needs even if we do not continually ask. Trust me . . . we have asked for a ramp for greater than 2 years now. It was awesome for God to answer this prayer NOW. The plan is to try to have the ramp completed by the time we return from Charlotte. Hurray!!! We do have a prayer request. Since the Grand Mal Seizure last week, Erik has just not been himself. Real quiet and just different. He has had a few seizures as well. Nothing major but just a few breaking through. This morning at 4am we woke to Erik in a mild seizure. By the time we got to him, he was settled. We realized that Erik was hot with a fever. This is concerning because Erik is not one to spike a fever. In fact, I only recall 2 times when he has had a fever not connected to a major infection. We gave him Motrin which cooled him off and took him to the pediatrician this afternoon. They did blood work and determined that it appears to be a virus. Please lift a prayer that it is nothing more than this and that it will quickly pass! It is just so rare for Erik to have a fever. Thanks so much for all of your continued support. Love in Christ, Erik's Family Psalm 55:22 Cast your burden on the LORD, And He shall sustain you; He shall never permit the righteous to be moved. KJV

February 17, 2010 - GREAT NEWS!

Hello. Well . . . we are thrilled to share with you that Erik received his stroller yesterday! Please see recently posted photos. God is so good and the stroller is better than we anticipated. Erik fits perfectly with room to grow and the features are wonderful. THANK YOU, THANK YOU, THANK YOU to those of you who contributed to the cost. We would not have been able to get this without your support! He can recline (this will make rest and diaper changing much easier when we are out), his legs can be raised (this will help with leg circulation and comfort), there is a canopy for shade, and more than anything his head and feet do not extend past the stroller! He just was SOOOOOOO happy when we put him in the stroller last night! It is REALLY light weight which is great for his nurses and all caregivers too. We have a doctor's appointment with Duke this afternoon to get Botox and we will be taking the new stroller along for use. It will be nice for him to be comfortable and this will be much easier to sue when we are in Charlotte getting HBOT twice per day. Please pray for comfort for Erik during this Botox appointment as this is a quick yet painful procedure. Thank you. Please also pray for our upcoming trip. We have set the dates for March 22 through April 16th. We have increased expenses this time in that expenses for furnished housing are added to our cost. This is approximately $2,000 for the duration. In addition, we were in hopes that CIGNA would help cover some of the costs this time to offset the housing but they are giving no indication that this will happen. The treatment is $3,180. Just last night a nurse who has not worked with Erik since before his HBOT treatments commented repeatedly about how much more alert and better Erik is. Since the last round of HBOT, he seems to be stronger, more focused. He is just so much fun and more engaged! We are looking forward to seeing the improvement another round of treatment will offer. In addition, we are again amazed how God works. With Erik having the VNS now to help control seizure activity, we are looking forward to seeing if the experience will be better due to less seizure activity. Please keep us in your prayers as we move forward with planning this trip. Many people have asked about our needs during the upcoming treatment in Charlotte so in response we added a section to his webpage sharing what we know will be additional needs during this time. Love in Christ, Erik's Family

January 26, 2010 - Lots of good news!

Hello Everyone! Well we do have lots of good news to share with you!!!! First, we woke Saturday morning to Erik in a seizure. This was NOT a small seizure. In fact, this was the type of seizure that generally requires administration of medication that knocks him out for roughly 2 days. Anyway, we grabbed the magnet for his VNS and ran it cross the device and the seizure stopped in about 10 seconds! What a wonderful thing! No additional intervention or medication was required. Second, today was our appointment with Duke about a possible hip surgery. We met with the surgeon and he indicated that although Erik's right hip is partially moving out of his socket, it is not to the point where surgery is required. YEAH! We have a follow-up appointment set for the end of July (6 months) to have additional x-rays taken. Botox treatments (we have an appointment scheduled for February 17th), time standing, and solid physical therapy appear to be key in preventing further strains/complications. We may not be able to avoid this surgery at some point but there is a chance and we will sure try! What all of this means for us is that we can focus on getting the therapy, Botox, and HBOT Erik needs. We planned on heading back to Charlotte in the Spring for a second round of treatment but hesitated depending on the outcome of this appointment. At this point, we are going to work to set something up to begin mid-March. This will require that we fund this (unless CIGNA will step in and cover the treatment - we are not holding our breath!) and make arrangements for residing in Charlotte for a month. Although this treatment is such a good thing for Erik, it is tiring and many things will have to come together for this to happen. Not sure about the financial issues, mom's work allowing her to go and work remotely as was possible with the last trip, housing and the multitude of other things that have to come together for this to be possible. For those of you who know us we will do as we have in the past and work towards the goal of making all of this happen and trust that the Lord will make it work out smoothly or put up "road blocks" that clearly steer us away from this if it is not His plan for Erik. Please keep us in your prayers as we begin attempting to put all of this together. Your faithfulness as prayer warriors for Erik is so important to us and is proving to be a true gift for both Erik and our family. Love to all, Erik's Family

January 11, 2010 - Unbelievable Week . . .

Hello. WARNING – LONG post ahead! Well . . . we are just thankful we survived last week to be able to tell you about it! Here is a quick summary: Monday - Mom learned that there are significant management and staff changes taking place at work reducing the team she is a part of from 9 to 4. No one was let go but instead a new group is forming in the company and several key team members are being pulled to that group. Change is good but this drastic of a change is always concerning. Tuesday - Mom and Erik's nurse took Erik to an orthotics appointment to hopefully get a lift for his shoe and to inquire about additional support for him while in his wheelchair. He is leaning alot and extra support should help this. The outcome of the appointment was unbelievably surprising. Because of tone issues he has from his CP and past trauma, it was recommended that he have surgery to his right hip to prevent a threatening dislocation. When dealing with CP, it is very difficult to avoid this surgery. Knowing this, we have worked very hard to avoid it but it looks like we were successful putting it off for a while but it is still needed. The surgery is rather intense and involves breaking the femur bone near the hip, making adjustments and setting it back in place. This would require a half body cast during the healing process for 4-6 weeks. Same that would be required if the bone was accidentally broken. God has provided an excellent resource for us even before we knew this was pending because Erik's classmate is just returning to school today from having the same surgery and he did really well through it all. Great to have someone to help us through this process. We have an appointment with the surgeon the end of January for a second opinion and to make a final decision. Please pray for us to have the wisdom to make the right decision for Erik. Wednesday - Effective January 1, our insurance through Mom's work changed. Knowing this and knowing that Erik had a key appointment to receive Botox for his right hand January 6th, we called the new provider mid-December to confirm all would be okay. They said to just enter the insurance information when known which we did when we received our card late December. They said it would be seamless and not to worry. Erik periodically receives Botox injections to relax his muscles and ensure he continues to have the use of his right extremities. He has been receiving these treatments for several years. Botox is difficult to schedule since local physicians typically plan 1 day per month to administer this medication. Erik was scheduled to receive Botox this summer but was hospitalized because of a seizure and had to miss the appointment. Next available appointment time was January 6th and we took the appointment knowing this would be a long time to have to wait. Erik has regressed during this time. Wednesday was the appointment time. Mom took time off work, made transportations arrangements, secured nursing (we have to have someone with us because of his medical fragility), kept him out of school, paid $7 for parking, made arrangements for our other 3 children’s afterschool care since mom would most likely not be home in time, and probably something else we are not thinking about. Anyway, when we arrived mom was called into the Financial Care Coordinator’s office and told that they would not be able to provide treatment for Erik unless we paid ½ of the cost ($5,300) in advance because the new provider had not provided authorization. This started a chain of events. Although we and the Financial Care Coordinator did everything as timely as possible with the holidays, and the fact that Duke was not able to work with the new provider until the benefits program was effective – January 1, 2010, it was not approved in time. Keep in mind that Erik has had Botox many times, all approved, for the same thing. Nothing was counter-customary with the appointment and/or treatment. Multiple calls were made to the new provider and we explained that this appointment was critical for many reasons. First because of all that had to be coordinated to just get there, second because we had done all we could do to make contact and get things approved, third because we had been told it would be “seamless”. In addition, to make our ability to handle this even more of a challenge, Tuesday's news about the surgery made the need to Botox even more important since it would relieve some of the discomfort – at least temporarily. The way this connects is that we see the orthopedic surgeon on January 26th. The opinion is that this surgery needs to be done as quickly as possible. So since the next available Botox appointment is in March, if he wants to do the surgery right away, it could easily be 6 months before Erik can get Botox again. In addition, as stated above, post surgery Erik will be in a body cast for 4-6 weeks so we will not even be able to physically transport him to the appointment without lots of planning and coordination, if this is possible at all. It is known that people always regress after surgery. If we had the Botox done as planned, we would be able to continue to work with Erik’s limbs and keep him from excessive regression. As it is, he is quickly losing the use of his right hand/wrist. We pleaded with the insurance reps (who by the way were very nice) but they could do nothing. We cannot find in this process where we could have done anything different to avoid what happened yesterday. At this point, we accepted the March appointment time (and asked to be called should someone cancel before this time) but know that this probably will not be an appointment we will be able to keep. Because of the time in between appointments, it is likely that if Erik will have regressed to the point where Botox will not make a difference and we are at risk for the doctor not approving the procedure because of this. We are REALLY close to this point now and since we know the upcoming surgery will cause regression, we fear that Erik may lose the use of his hand primarily because of a lack of timely authorization from the insurance provider. Please pray that an appointment time will open up before the surgery and that Erik will not regress beyond where Botox will be able to help. Friday - We received a call from Erik's health care case worker and the bath seat we have been working to get for my him since August of 2009 was just approved by Medicaid (it was approved by BCBS months ago). Sadly, the new provider denied the equipment because there is only one company in this area ABRIA (or something like that) who they work with for durable medical equipment and this is not who we have been working with. We have been working with his current equipment providers since 2005. Getting equipment is a lot of work and very time consuming. An evaluation is required and multiple approvals must be granted including primary and Medicaid for my Erik's case, and this alone takes months. Please pray that something can be done to approve Erik’s bath seat quickly since we just got final Medicaid approval (the final step in this process) so we do not have to start this entire process again and have to wait another 6 months! AS IF THIS WAS NOT ENOUGH . . . Saturday - Saturday evening the sensor on the washing machine (upstairs) broke and the washer overflowed running into the hallway, both girls bedrooms, into the floor/ceiling and into the walls and onto the carpet on the first floor of the house! Incredible! So now we are working to see if we can meet our deductible and get our house back in order! This will take time and lots of prayer to get through! So . . . the good news is that we must be doing something right OR God must have something amazing in store for us since the enemy is working so hard to get us from every angle - health, family, work, financial. Stay tuned to see what blessings lie ahead and keep us in your prayers! Love in Christ, Erik's Family

January 6, 2010 - PA Trip Went Well . . .

Hello All! HAPPY NEW YEAR to you all! Just a quick note to let you know that the trip to PA after Christmas went REALLY well! We rented a 15 passenger van (so we could get the wheelchair and everybody together) and sat Erik in the row directly behind the driver's seat. He loved it. He rode well and only had 2 REALLY brief seizure spells while we were away. We learned that we live in the right state. It was so cold and getting Erik into his wheelchair in the cold was hard to do without him getting really cold. We managed though but it took more than one of us a quick speed to be successful! There was no snow when we arrived but it snowed the 2-3 days after we arrived. The kids LOVED it and spent alot of time sled riding. The day we left it did not snow which made the ride home perfect. We were so happy to see family and friends and are so happy we "stepped out of our comfort zone" to take this trip. Thanks for all of the prayers that surrounded us on this journey. Love in Christ, Erik's Family

December 24, 2009 Merry Christmas!

Hello. Well . . . our home is filled with excited children today anticipating Santa's visit tonight. This year has been filled with challenges, progress, and blessings for our family. We are thankful that God has seen us through it all! The next exciting event we have ahead of us is that we have all been able to get time off work to allow is to travel to PA to visit family. Erik made this trip once when he was 6 months old. After this, he was diagnosed and it has been too risky to travel that far. The trip would have been difficult for him. This year, we are thankful that God has given Erik good health and us the peace to think that we can take this journey as a family. We will load up the car and head up North the afternoon of the 26th and return late evening on the 30th. Please keep us in your prayers during this time and we will look forward to sharing how it goes with you when we return. MERRY CHRISTMAS to you all and thanks for your prayers and support this year! Erik's Family

November 16, 2009 - All is settled . . .

Hello Everyone! Well . . . things are going well for us. Erik seems to be doing well with the VNS and went almost 4 weeks with no signs of seizure activity! This was great. He has had a few VERY brief breakthroughs in the last week or so but with all of the illnesses going on around us, we are not surprised. The plan now is to stay where we are with things and see how he does over the next month or so. He is enjoying being back in school and really missed his friends. He is responding well and seems quieter and somewhat more focused/engaged in the classroom which is a great thing to see. We just want to let you all know that we are happy to be somewhat settled for the moment! HAPPY THANKSGIVING to you all! In His Name, Erik's Family