MRI

We just got the images from Macayla's latest MRI. This video is a bit fuzzy because it had to be small to upload, but it will show a comparison of all her MRI's from approximately the same cross section location. 

Notice how the natural open areas (ventricles) within the brain are opening up more and getting larger. The least effected area of the brain is the temporal lobes (bottom, toward the front) and that would help explain Macayla's memory being as good as it is. As I look at these images, I am amazed at how much she can do. It is amazing to think that a person can have a tumor the size of grape in their brain and it cause so much havoc. By that standard, you would think that when more than half of the brain has atrophied, that a person would be dead. But, amazingly, Macayla still laughs, makes vocal noises, listens to us when we talk to her, knows who we are, and has some of the cutest stretches in the morning when she wakes up. I love to watch her yawn and stretch her arms over her head when she is waking up. It gets both of our mornings off to a good start.

Blindness

Well, it seems to be official. Macayla seems to have lost all of her sight. Until recently, she was still responding to light. We could turn on the overhead light in her room and she would look up at it. But now she does not respond to it. She no longer responds in a dark room to a single source of light, static or flashing. We just had an appointment with the eye doctor and he stated that based on what we were describing as far as her responses and the condition of her optic nerves and retinas, that he believes she is no longer processing light. Her hearing has become extremely sensitive while all this has been happening as well. She jumps at sudden sounds, even if they are not that loud. We are so thankful that her sight stayed active as long as it did. Most kids with Battens lose their sight early on. But she was still responsive to light and shadows this past summer. It has given us some great moments of joy when she would be in the midst of a series  unorganized movements and suddenly pause and look at us. We are thankful in Macayla's case especially considering she has been such a strong visual learner. She really kept her sight longer than we anticipated. We praise God for that and we praise Him that her memory has held on for so long and that she is generally happy and smiling.

Another Seizure

Yesterday morning, Macayla had another seizure. I was washing her hair and about to start blow drying when she started. It really was without warning. In the past she has seemed agitated for a period of time before the seizures. But she was acting normal before this one. It lasted about 2 1/2 minutes and then she seemed to pass out. About 5 minutes later, she started smiling. She has never done that after a seizure. She smiled and then slept for about an hour. Then she perked up the rest of the day and even was a bit agitated in the afternoon. So, far that has been the only one and it has been 4 weeks since her last one. There definitely is no rhyme or reason to these things. 

Growing Up

Macayla is growing up. She is 7 years old, but she is already experiencing some of the "changes" so this week during a doctor's visit we decided we would talk to an endocrinologist. We would like to prevent Macayla from having her menses if possible so that she does not experience all of the discomfort and pain associated with it. Some have found such treatment controversial in other cases. Usually the ones speaking out against it do not have a special needs, brain-damaged child. Macayla is 7 but in many ways functions on the same level as a 2 month old. She has a limited time left and plenty of discomfort and pain to go through. So, if we can minimize or remove any of that pain and discomfort, we will.

Still, it is hard for me as her Dad to sometimes deal with all these "girl" things. Jennifer laughs at me a good bit, but hey, I'm a guy. Womanhood is still a mystery to me on so many levels. Honestly, I thought we would never see the day when Macayla would go through this, but as it turns out many kids with brain disorders can start early and in some cases they can start really late. I guess we get the early category. I'll update as soon as we learn what endocrinology can do. This will be a learning experience.

Honest Lyrics

This morning, I heard several praise and worship songs on the radio. Lyrics like, "All I do, I do for You, Jesus. All I go through, I do for You, Jesus." Or, "Every step I take, I take in You." Every time I hear a song or hymn with these types of lyrics, I struggle to relate. When I think about it (and be brutally honest with myself) I realize that many "steps I take" are not taken in Christ, but for myself. It would be impossible for me to claim that "all" I do is for Christ. It is lyrics like this that are frustrating because it's hard to take them as representing reality. They may represent a feeling and desire to live in such a way, free of selfishness and full of devotion, but I find that I so easily function in selfishness and my devotion so easily turns to my own agenda. 

If I were to write these lyrics over, I would insert, "Lord, help me to..." As a father, husband, in-law, etc. I would have to write lyrics that would in fact say, "Lord, help me to listen even when I don't feel like it." "Lord, give me love so I can be patient and kind." "Lord, help me follow your steps so my children will follow mine to You." Most of all, my song would always have to include, "Lord, forgive me for doing it all for me and not for You." So many songs have been written over the past couple of centuries that reflect desires to be good disciples. But we also need those songs that remind us how we fall short of that desire and can only rely on the "amazing grace" that would save "a wretch" like me. The Lord is amazing and I pray that I will rely on Him more to make my life into a song that honors Him above all. I need His song in my life, because it is evident that I am no song writer.

6 Weeks

Macayla made it 6 weeks without seizures, but they returned on Friday last week. We had reduced her Clonapin to see if she could be more alert and interactive. She became alert, but she had a seizure in the van Friday afternoon. We went back up on her Clonapin and she has had no seizures since Saturday morning. The interesting part was that Macayla started having some rigid tremors in her arms for three days in a row and it was on the third day she started the seizure activity. Her arms had not had those movements for six weeks. It makes us wonder what is happening in her noggin when all this starts. In spite of going back up on her clonapin, she has stayed fairly alert. She has been laughing a lot at her brother. She has been playing a game where she throws her head forward and it falls over to the side of her wheelchair. She thinks it is funny even though it sounds and looks like it would hurt. We tell her to put her head back and she laughs at us. It has become a game and we have had to pad the side of her chair. She is growing like crazy and is 66+ lbs. She seems to be having trouble with her skin. She has rubbed one of her knees and one of her elbows raw in the bed. Unfortunately, they are not healing as quickly as she used to. Hopefully, we can control that more soon. We are so blessed by her and thank God for her each day. 

Grace

I recently heard the comedian Chonda Pierce say, "Depression is the gift that keeps on giving." I must agree. It is one of those things that never quite goes away. It may hide for a while, but then it sneaks back in and before you recognize it, the exhaustion, the desire to be alone all the time, the unexplainable aches and pains of the body all come back. It is easy to turn to a gift like food to cope. Certainly chocolate can make it better! But food is a gift from God that was not designed to be an antidepressant on a plate. It is a perversion of such gifts to turn them into coping mechanisms. Instead, God gave us a gift that was specifically designed to help us cope in this fallen world. Grace. Grace is God's gift that sustains us in the midst of suffering and circumstances beyond our control. It is also the gift that frees us from our own sin and habits that draw us away from Him. Depression is an ongoing struggle and it easily removes our reason and reliance on Grace. I thank God for great tools like doctors and appropriate antidepressants. I thank God for great tools like counseling. Most of all, I thank God for His Grace that is sufficient beyond all measure to guide us through and restore us in the midst of a fallen world. 

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.