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