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