Drugs and Adolescence

Macayla has made it more than 4 weeks without a seizure (that we know of). But she has been very lethargic and sleeps a lot more than normal. We have been cutting out medications that could cause her to be sleepy. We took her off of a seizure medication (Zarontin) that no longer fit her type of seizures. This made her Lamictal levels increase by only a few points, so at first we thought that may make her sleepier. So, we removed her melatonin (natural sleep medication) and that has not helped. We are now trying to cut back on her clonapin which is a anti-anxiety/anticonvulsant to see if that helps. If none of the medication reductions change her energy level and alertness, then it may mean that we have reached that point in the disease where she is simply slowing down. We just want to make sure she is not taking medications that are no longer necessary and that will help her to be less "doped up" and alert as possible. 

Talking to a nurse who works in hospice, I was told that many patients will go through cycles of sleepiness for multiple days followed by a day or so of alertness as they draw closer to becoming vegetative. We don't know if that is the cycle we are beginning or not. EVEN if it is, a vegetative state would still be quite a ways down the road. Another possibility is that Macayla is simply being an adolescent. She is only 7, but she is experiencing some hormonal changes and may need some extra sleep. (Our pediatrician explained that these changes can occur earlier in kids with neuro-problems.) Adolescents tend to sleep in late, so she could be experiencing that hormonal drag of prepubescence. So, maybe we simply have sleepy-headed pre-teen in the house! Drugs and adolescence can be such a drag!

Three Weeks

We have made it three weeks since Macayla's last seizures started. We hope to make it another week. She has done well with school this week, but overall Macayla is more lethargic than she was at the beginning of the summer. We will be doing another MRI soon to track where we are. It will probably be the last one we do. Macayla now weighs 66 lbs. and is 52 1/2 inches long. Thankfully, the nutritionist does not want to increase any calories at this point. My back can't take anymore calories on Macayla (or really on me for that matter.) 

You may notice that there is a new link below along the right side of the blog. The Chocolate Funny Farm sells chocolate and coffee (two of my favorites) and many other items related to chocolate. Check out the t-shirts. It might give someone some great Christmas ideas and it is a business that has been started by our pastor's wife, Susan. By supporting their business, you support their ministry as it gives them much needed income. So, check out their website and don't be shy about buying chocolate for the guy who writes this blog! I know I just wrote that I don't need any more calories, but I could be persuaded to forget what I wrote.

You Want A Piece of Me?!

There are times when it feels like everyone wants a piece of you, but there is only so much of you to go around. The kids always need something. The spouse needs to discuss decisions that have to be made. The phone company wants their bill paid. The neighbors want you to finally cut your grass. Besides the logistics of a home and life, we have to invest so much relationally and emotionally in others. Sometimes it can seem overwhelming how much people want from you. I have found myself wanting to get away by myself for a few hours only to find I can't because my family needs something else. 

Jesus was having a rough time. He went to his hometown only to be rejected and dishonored. Meanwhile, his cousin and friend, John the Baptist, was executed by king Herod. Jesus hears of the death and retreats to a secluded place to be alone. He wasn't dealing with simple things like phone bills, lawn care or dirty diapers. He was rejected by the people he grew up with. He lost a family member and friend to a ghastly death. But while he was in this secluded place, the crowds of people found him. He had compassion on them and healed their sick. I would have run the other way, but he gave them what they needed. He even fed 5,000 of them miraculously. Then he sent his disciples out in a boat ahead of him while he said goodbye to the crowds. Then, finally, at the end of the day he gets his time alone to pray. But as soon as he is finished, he has to save his disciples in the boat from wind, waves and a lack of faith (Mt 14). 

I find myself becoming impatient at how much Jacob wants to talk to me. Five year olds have a lot to say. I want to tune him out at times, but Jesus never tunes me out when I want to talk to Him. I so often want to get away from home to be by myself, a home where I am loved and accepted. Jesus was rejected at his home. John the Baptist's imprisonment and subsequent execution directly resulted in John's belief in Jesus. How did Jesus feel about John's persecution on His account? How does He feel now when people are persecuted for Him even today? He said we would be blessed when persecuted for His sake, but it doesn't make the persecution easier. In the midst of grief, Jesus showed compassion when I would show selfishness. I'm not even being persecuted. I'm just dealing with life. That is a blessing I take for granted. I can only pray for his grace and love for they are obviously and infinitely sufficient in my weakness.