We were able to review Mac's MRI today and thankfully the rate of atrophy has decreased compared to the previous 6 months. There is a little more atrophy in her cerebellum (the part located at the base of the brain where the brain stem comes in) but there is only "minimal" changes in the rest of the brain. This means that it has slowed down some and we praise God for that.
We should be starting on cystagon next week which is an experimental drug that has helped some children with Battens, but not cured anything. It has to be administered four times a day but we aren't sure exactly how to get it in her yet. We will also start vitamin E, B2, and B6 with this. The cystagon study as well as other studies have shown this to be helpful, though they aren't really sure why yet. The way we understand it, the cystagon helps slow down the build up of the deposits in the cells. These deposits build up until they destroy the cell and this leads to the atrophy of brain tissue. Hopefully, the cystagon will slow Macayla's down which would be great since it is slowing down some now. This is encouraging overall.
Macayla has been measured for her wheelchair and now we wait for all of the insurance paperwork to go through. The chair will be a big help and we look forward to her getting it and being more comfortable. She had her blood work sent off for molecular testing so they can map her genes and isolate the mutated genes that are causing her Battens. We'll use this info to test Jacob to see if he is a carrier or not. That's the latest.
Friday, June 30, 2006
Friday, June 23, 2006
Love is patient...
God has kept two sections of Scripture biding for my time lately. These two pericopes have been orbiting my heart and mind as of late and they swirl slowly past so that I have time to look at each one separately as well as together. I have been trying to see how they compliment each other and why. The first passage is Philippians 4:4-7 and the second is 1 Corinthians 13. In Phil 4, Paul tells the Philippians to "rejoice in the Lord always, again I say rejoice." In this life, how do we rejoice in the Lord? How do we rejoice in the Lord that allows terrorism and Battens disease? How can I be "anxious for nothing" as this text later says? It says in everything by prayer and supplications with thanksgiving let your request be made known to God and the peace that surpasses all understanding will guard your heart and mind in Christ Jesus. Well, I've prayed. I've prayed and made requests. I've prayed with thanksgiving. But I'm still anxious. I still worry. Macayla is still sick. Why? I mean I did exactly what the text said to do many times over and I still have worry and not much peace. Maybe I don't have enough faith. Or maybe this is not a formula for ridding the world of anxiousness. Maybe I shouldn't take Philippians 4 for anxiousness like I take aspirin for a headache.
I was making a request known to God the other day. I prayed for patience with Macayla as we fought to get her meds down. Parents often pray for patience. I do all the time. But no patience seemed to ever come my way. Then it happened. I was driving, Macayla was yelling in anger at me over something I couldn't figure out and Jacob was making his requests and supplications known to ME about staying home for the day, getting his apple juice, and watching Batman all at once. My nerves were in the cheese grater and all I could do was pray for patience. The answer: "love is patient. love is kind." 1 Corinthians 13 was spoken to me. I then realized I needed to stop praying for a byproduct and start praying for the source. Love is the source of patience. The source of kindness. Love is not jealous, it doesn't boast, it is not arrogant. Love does not keep account of wrongs suffered. Love is, in other words, the source of contentment. Love bears all things. This word in the Greek for "bears" carries the image of thatching a roof to cover and shelter from the elements. Love shelters. Love is the source of all this and God is the source of Love. God is Love.
The word rejoice in Phil 4 is translated from a Greek word that is a root for the word "grace." Love was freely given by God to us on the cross and resurrection. It is this grace that makes it possible for me to rejoice and to love. 1 Corinthians 13:13 is engraved inside my wedding band. It isn't there as some quaint, poetic reminder that I "love" my wife. It is a reminder inside a never ending circle of the never ending love of God. A reminder of his eternal faithfulness. This is so I can go to the source. God is the only source I can go to that can supply me with the kind of love my wife needs. The kind of love Macayla and Jacob need. To supply me with patience, kindness, contentment, forgiveness, and the ability to rejoice in Him always. It is through this grace that I know the Lord is near guarding my heart and mind from worry. I pray that I continue to see the source more and more fully. I pray for his love.
Then I heard our pastor reference Romans 8:35-39 in the sermon and this gave such great assurance about Christ's love. "Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril or sword?...But in all these things we overwhelmingly conquer through him who loved us." Paul writes that he is convinced that there is nothing (death, life, angels, demons, present, future, powers, height, depth, or any created thing) can separate us from the love of Christ. This love, this source is present in my life only because of Christ and only because he is so faithful to pour it out in grace.
I was making a request known to God the other day. I prayed for patience with Macayla as we fought to get her meds down. Parents often pray for patience. I do all the time. But no patience seemed to ever come my way. Then it happened. I was driving, Macayla was yelling in anger at me over something I couldn't figure out and Jacob was making his requests and supplications known to ME about staying home for the day, getting his apple juice, and watching Batman all at once. My nerves were in the cheese grater and all I could do was pray for patience. The answer: "love is patient. love is kind." 1 Corinthians 13 was spoken to me. I then realized I needed to stop praying for a byproduct and start praying for the source. Love is the source of patience. The source of kindness. Love is not jealous, it doesn't boast, it is not arrogant. Love does not keep account of wrongs suffered. Love is, in other words, the source of contentment. Love bears all things. This word in the Greek for "bears" carries the image of thatching a roof to cover and shelter from the elements. Love shelters. Love is the source of all this and God is the source of Love. God is Love.
The word rejoice in Phil 4 is translated from a Greek word that is a root for the word "grace." Love was freely given by God to us on the cross and resurrection. It is this grace that makes it possible for me to rejoice and to love. 1 Corinthians 13:13 is engraved inside my wedding band. It isn't there as some quaint, poetic reminder that I "love" my wife. It is a reminder inside a never ending circle of the never ending love of God. A reminder of his eternal faithfulness. This is so I can go to the source. God is the only source I can go to that can supply me with the kind of love my wife needs. The kind of love Macayla and Jacob need. To supply me with patience, kindness, contentment, forgiveness, and the ability to rejoice in Him always. It is through this grace that I know the Lord is near guarding my heart and mind from worry. I pray that I continue to see the source more and more fully. I pray for his love.
Then I heard our pastor reference Romans 8:35-39 in the sermon and this gave such great assurance about Christ's love. "Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril or sword?...But in all these things we overwhelmingly conquer through him who loved us." Paul writes that he is convinced that there is nothing (death, life, angels, demons, present, future, powers, height, depth, or any created thing) can separate us from the love of Christ. This love, this source is present in my life only because of Christ and only because he is so faithful to pour it out in grace.
Tuesday, June 06, 2006
Jesus Wept
In 2005 we discovered that Macayla was having seizures. Throughout most of the year we were hopeful that we would discover the cause of the seizures but we were confident we could gain control of them with the right combination of medications. A few days before Thanksgiving, I heard a sermon on John 11 where Jesus raised Lazarus from the dead. We always focus on the raising from the dead part. We know the outcome of the story so it is easy to skip over some important elements of it. As I listened to this sermon, I was reminded that Jesus waited before coming to Lazarus and Mary and Martha's aid. He could have stopped Lazarus from dying, but he didn't. He didn't even have to go to Lazarus' home to do it. He could have simply willed Lazarus to be healed and it would have been so. But he stayed at a distance and allowed the sickness in Lazarus' body to take its course. I was reminded that Jesus was in control of the situation. When he did finally show up on the scene, Mary and Martha both acknowledge that Jesus had the power to prevent their brother's death but that he didn't. I knew as I listened to this sermon that Macayla was dying. I knew God was preparing me for the worst news a parent will ever hear. This was at Thanksgiving and a MRI in December confirmed that we were in the realm of a fatal disease. It would be the week after Christmas that we would confirm the name of the disease, Battens.
But John 11:35 is the shortest verse in the Bible, "Jesus wept." Jesus comes to the tomb of Lazarus who was 4 days dead at this point and Jesus wept. He didn't weep because he morned the loss of a friend. He knew that he was going to raise Lazarus from the dead before he ever got news of the illness. He wept at all of the grief that death causes in our lives. First of all, death was not included in the original design of our world. Our sin brought that about. Second, death doesn't just kill someone, it grieves those who loved the deceased. Jesus wept because it didn't have to be this way. He wept over the grief of those who loved Lazarus like he did.
I weep for Macayla often and Jesus weeps with me. Macayla is a victim of a fallen world where disease and death exists. But that's not what was intended and that's why Jesus came. He came to restore what was intended in his creation. He came to bring us back into fellowship with him. God is not a puppetmaster in the sky just toying with us. He loves us. He loves us so much that he weeps with us and I bet his tears are bigger than ours. He loves us so much that he crossed the gap between him and us. He brought "up there" down here.
Jesus could heal Macayla and totally restore her brain and body. But he is the resurrection and the life and He can take care of Macayla better than I. Even if she is not healed and dies (which only a miracle could stop) Jesus will take care of my and his little girl. Jesus not only wept but he later suffered and died because of our fallen world. His resurrection, unlike Lazarus', overcame death and sin. It provides life, real life for those who trust Him like a child.
But John 11:35 is the shortest verse in the Bible, "Jesus wept." Jesus comes to the tomb of Lazarus who was 4 days dead at this point and Jesus wept. He didn't weep because he morned the loss of a friend. He knew that he was going to raise Lazarus from the dead before he ever got news of the illness. He wept at all of the grief that death causes in our lives. First of all, death was not included in the original design of our world. Our sin brought that about. Second, death doesn't just kill someone, it grieves those who loved the deceased. Jesus wept because it didn't have to be this way. He wept over the grief of those who loved Lazarus like he did.
I weep for Macayla often and Jesus weeps with me. Macayla is a victim of a fallen world where disease and death exists. But that's not what was intended and that's why Jesus came. He came to restore what was intended in his creation. He came to bring us back into fellowship with him. God is not a puppetmaster in the sky just toying with us. He loves us. He loves us so much that he weeps with us and I bet his tears are bigger than ours. He loves us so much that he crossed the gap between him and us. He brought "up there" down here.
Jesus could heal Macayla and totally restore her brain and body. But he is the resurrection and the life and He can take care of Macayla better than I. Even if she is not healed and dies (which only a miracle could stop) Jesus will take care of my and his little girl. Jesus not only wept but he later suffered and died because of our fallen world. His resurrection, unlike Lazarus', overcame death and sin. It provides life, real life for those who trust Him like a child.
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