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