Prayer Answered with a "YES!"

We received our genetic results today and the best news is that Jacob is in the clear! We were confident from previous tests that he was not affected by the disease, but only a genetic test could confirm that 100%. Jacob only has one copy of the mutated gene (he would have to have both copies to be affected). He carries Jennifer's copy which is the more rare mutation and the copy I carry is the more common mutation. So, when and if Jacob marries, his future wife will need to test to see if she is a carrier or not. Otherwise, Jacob will not be affected by Battens disease and we praise our Lord for that! We prayed that Jacob would be free from the disease and God said "Yes."
So, we are celebrating this news today and we are excited that Jacob's condition is no longer in question.

School and Fun

Macayla has had some interesting changes over the past two weeks. She has had significantly less seizures that we could outwardly notice. We aren't sure why. It could be caused by better absorption of seizure meds through her feeding tube than what she got by mouth. It could be from the fact that we reached our full dose of the experimental drug she has been on for Battens. Or it could simply be how her brain is being affected at this moment in the disease. Whatever it is, we like it. We know that it could go back to the way it was or worse, but we'll take what we can get.
Macayla tried out school for the first time today. She actually paid attention for 20 minutes during circle time! That's an amazing event since during these past two weeks Macayla's attention span has been about two minutes. My hat goes off to her teachers because they keep the atmosphere so energetic and interactive that it's hard not to pay attention. It will take time for them to get used to Macayla and for Macayla to get used to the schedule, but it seems to be off to a great start. Macayla even made a new friend in the class, a little boy, who really anticipated Macayla's needs and wants. He even got her to toss a ball back to him which is difficult to get Macayla to do usually. I'm so excited for her as she gets to go back to school for the first time in a while. We will go as long as she is able and it is beneficial. We thank her teachers for all that they do.

Outside the City

Macayla is playing on the floor and looking through a book about Jonah. Jonah the prophet of God who was sent to the city of Nineveh to deliver God's message. At the end of 2004, we had come to a point where God began to open the doors for us to start back in seminary. Through prayer, Jenny and I came to the conclusion that it was time to set things in motion. We put our home on the market and began comparing the seminaries we had narrowed our search down to. To my surprise, God made it abundantly clear that we were to go to New Orleans for seminary. My biggest hang up with New Orleans was the crime rate. How could I protect my family in a city where the murder rate was ten times the national average? I feared that such a decision was putting my family in danger, but Jenny reminded me that I ultimately can only protect her and the children so much because, in short, I'm not God. So, in February we submitted to the call to New Orleans and set all of the paperwork in motion. In March our home sold and in April Macayla started having seizures.
After we ran the whole spectrum of tests that could account for seizures, Macayla was normal (accept for the falling and seizures of course). Our neurologist also shared that the cause for epilepsy cannot be found half the time and the only choice is to control the seizures. At that point, New Orleans actually appeared to be promising for Macayla. There was an epilepsy center there with the Oshners Children's Hospital that seemed to have much to offer for someone like Macayla. So we went. We submitted in obedience to what God had directed us to do. We pulled up stakes and moved into a third-floor apartment on the seminary campus.
But hurricane Katrina sent us back to South Carolina two weeks later. Like most people, we thought it would be over quickly, but the flooding made that impossible. We knew it would be August 2006 before we would get back down there. But then...Macayla. During our time in exile from NO we discovered Macayla's true condition, Battens. What a relief to finally know what was causing the seizures, but how horrible it is to know what is coming.
Jonah was a prophet who was told to go to a violent city he didn't want to go to. After some rebellion and prayer, he finally went and did what God commanded. But Jonah had expected God to act after the message was delivered. The message was, "Forty days and Nineveh will fall." It was NOT "Nineveh will fall unless you repent." No, Nineveh was supposed to fall. So Jonah delivered the message and sat outside the city to watch the fireworks. But the fireworks never came because Nineveh repented. God had not acted like Jonah expected. Jonah was angry, so angry he wanted to die. I did what God wanted. I went to a wicked city after rebellion and prayer, but God has not acted as I would have expected. (Of course, I wasn't going to deliver a message of judgment, but to go and learn to share a message of hope.) So here I am. Outside the city wondering what God is up to. But I spoke to a man who recently lost his little infant girl suddenly. She died in her crib. Listening to him and his story made me realize that I stay too focused on what I think God should be doing. Instead, maybe I should be focused on what God is ACTUALLY doing.

She Can't Taste A Thing!!

Many people, including myself, associate feeding tubes with hospice situations and as a marker that the end of life is near. Macayla had a feeding tube (G-Tube) placed this week. I was certainly nervous about this as it seemed like a step toward giving up or giving into the disease. We certainly feel a desire to fight the disease and never give up hope and accepting a G-Tube seems like giving in. But this is not an accurate perspective in a case like Macayla. Macayla has to take such awful tasting medicines that I am amazed that she has taken them for a year now without rebelling sooner. Mac's tube will change her life dramatically. We can spend up to three hours trying to get her meds down some days and we usually can't get all of it in her when that happens. There have been some days when we can get them done in ten minutes, but those days are rare now. So, Macayla's surgery was necessary and a blessing. It is in fact a way to improve the quality of life she experiences now.
The surgery went very well and she is recovering well. She did throw up once during her stay in the hospital. But other than that, she did great. She is eating again, though she is suspicious of the food expecting it to be laced with medication. But she eats well when she can and when her swallowing is good. When it is not, we supplement her with tube feeding. We love that she is still eating, but that is temporary and eventually she will be totally tube fed. The most amazing thing we have already seen is that it takes literally 20 seconds to get 8 medications in her. That leaves 2 hours, 59 minutes and 40 seconds to do other things like play and eat food that is not tainted by the awful taste of medications.
We see over and over how God has mobilized and moved people to reach out to Macayla and us during these times. People in the hospital, multiple churches, family and friends have all been used by our Father to comfort and encourage. We thank you all. We even got to celebrate our anniversary in the hospital by the generous and thoughtful acts of several folks. One friend from church brought us Steak Out complete with cheesecake! Another friend at the hospital dropped off a DVD romantic comedy, popcorn, M&M's and a nice card to go on the wall to announce our 8 years of marriage. We also got a vase of flowers for the room and balloons. We ate our meal, cuddled on the "wonderfully comfortable" cot, and watched a movie. What a wonderful experience in the midst of a hospital stay! Thanks to all! Macayla is home now and we still celebrate every time we give medicines because she didn't taste a thing!