Wish I had One of those Star Trek Thingies!

Star Trek came on in the afternoons when I was a kid. I can't remember which of the three channels it aired on, but I loved watching it. Dr. McCoy always carried a little medical scanner with him on trips down to the planet surface. It could diagnose any problem without surgery or invasion of the patient. I wish I had one of those!

Macayla is doing well over all, but I must admit that my definition of "well" is not fixed. For her, "well" means she has not thrown up or had many seizures and her breathing is good. She has been a bit more interactive the last couple of days, but that tends to increase seizure activity. One interesting observation: she gets a twitch in her right thumb anytime she has a seizure, reacts to stimulus or her facial expression changes. Her face still goes back and forth from pale to flush at times. Her cough reflex seems weaker and the swelling that was in her feet seems to be more in her legs now but not as pronounced. Her left hip is going in and out of joint, though it does not seem to be causing much discomfort at this point. All of this is why I wish I had Dr. McCoy's medical scanner thingie! I wish I could just see what is happening on the inside, measure pain and discomfort, and know better what helps and what hurts. But we will be waiting a while on those. In the meantime, prayer, hugs, kisses and medications are all we have.

So many sci-fi movies last century predicted we would be traveling in big cruisers to other planets by 2010. We are a little behind schedule. But I think we should develop all of the Star Trek gadgets before we build a starship. Give me a medical scanner thingie and a phaser! Ooh, and a "tricorder" and a transporter and a...

Job's Grief

Macayla has not given us a reliable pattern or behavior. Her vomiting has not been as predictable as we would prefer. The times when she is most interactive are unpredictable. Her throat is weakened and causes gagging quite a bit. It is sad to watch and often we feel helpless to do much for her. We take some comfort in the fact one of her new medicines, Lorazepam, seems to help keep her comfortable. We just wish we could do more for her.

I've been studying the book of Job lately. It is a difficult book to study and there are many facets to consider. God's sovereignty, the nature of suffering, counseling, and grief. We have bouts of grief quite often. We speak about it and even rage through it. Job spoke of his grief in powerful ways. He wished for his own death because his suffering was greater than most of us could even begin to fathom. His friends tried to correct his words and thinking in the midst of his grief. (Not a good way to start off counseling). Job's response resonated with me. "Do you intend to reprove my words, when the words of one in despair belong to the wind?" (Job 6:26) Sometimes we just need to vent our grief. We may even speak wrongly or incorrect theology in those moments. In Job's case it is notable that God later said Job spoke correctly and his friends did not. But spoken correctly or not, we may need to speak, rage, vent or cry through our grief. Job's friends did the most good when they were just there and kept their mouths shut! They messed up when they tried to explain God's motives to Job.

This weekend, we had friends and family come to visit. Friends from our church in Greenville and here in Anderson. My family from Aiken came to visit. Lately, my grief has been palpable and at times overwhelming because of all the changes in Macayla. This weekend has been a blur but comforting. Having friends and family here to just hang out, eat with, and love on was one of the biggest comforts there is. We spoke about things, though I can't remember exactly about what. We joked. We hugged. Did I mention we ate? We enjoyed watching the kids play and the dogs run themselves into exhaustion. Everyone got to see Macayla and love on her. It is amazing how stupefying grief can be. I really feel like I was only half awake in my interactions with everyone. But I woke up comforted this morning. The exhaustion is still here in spite of sleeping 13 hours last night! But God's comfort has been passed on through His people. Thanks be to Him and all who He worked through this weekend.

Beyond the Smiles

Macayla has had more days of sporadic vomiting, but she has also had some great moments of interaction. Last night she smiled and cooed with me. She looked like she was about to burst in laughter. These moments of interaction have lasted for about one to three hours at a time and she sleeps otherwise. The latest exception to this was Monday night when she did not sleep at all. She was awake and interactive. We gave her some medication to help stop her jerks and twitches, but it did not put her to sleep. So, I got most of the night Monday to interact with her and she slept for most of the next 24 hours.

Her smile is one of the most beautiful sights on the planet. It's a beauty that is beyond the surface as I cannot seem to catch it with the camera. Photos of her in full smile do not communicate it. There is something about the live event of her smile that gives you the full experience of beauty. It lets us know that she's still there and in spite of everything, she will be alright when the dust settles. For "in all these things we (followers of Christ) overwhelmingly conquer through Him who loved us. For I am convinced that neither death nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is Christ Jesus our Lord."

Autonomic Nervous System

It is amazing to think how wonderfully and fearfully we are made. Macayla's recent symptoms has educated us on part of the nervous system we have never given much thought to. Really, we don't put any thought into this in our own bodies. The autonomic nervous system works "autonomously" to control our bowels, bladder, blood vessels, stomach, etc. The signals just go on their own without us having to think about it.

For many months now, Macayla has had spells where her face would become beat-red or deathly pale regardless of her temperature. Her bladder function has often been sporadic. Over the past week, she has had spasms in her abdomen and swelling in her feet and hands as well as vomiting. Our neurologist had us draw blood yesterday to check her Depakote levels and amylase to check for pancreatitis (a side effect of Depakote, also known as Depakene or valproic acid). Her levels were normal and her Depakote was not even high enough to be therapeutic. So, it needs to be increased.

So, now our best guess is that her symptoms stem from the autonomic nervous system not functioning as well. It would explain why her bladder functions fine for weeks then suddenly stops for a day or two. It would explain the color change in her face as this system can constrict or dilate the blood vessels there. It is this system that makes us blush. It would explain the swelling in her feet as signals are not making it through to move fluid around properly. The amazing thing about this system is that the signals sent from our brain travel part of the way via nerve pathways and part of the way through chemical mediators. The type of action stimulated by this system depends on which chemical is used. One chemical causes blood vessels to constrict while another causes the vessels to dilate. One cause the bladder to contract while the other inhibits the bladder. When these chemicals are out of balance, problems start. The system is controlled mostly by the hypothalamus which is near the brain stem. If there is a problem in the hypothalamus, obviously there will be problems in the system. It is a wonder any of us function properly. In fact, I think it is a miracle.

But the sadness here is that if Macayla's autonomic nervous system is being impacted, then the deterioration is reaching her brain stem and the nerve pathways to these basic functions. It means her heart and lungs can be impacted. It means she may have symptoms such as vomiting for which there will be nothing we can do to bring comfort. It means we are facing what we dread.

But we know that the God who could create the amazing bodies he gave us has a plan. He will weave our lives and decisions into that plan. He will not allow Macayla's life to be wasted. He will heal her of these things, either while she is with us or when she is with Him. That's what this weekend is all about. Christ defeated death and sin at the cross and tomb. Now we truly only have to walk through the valley of the SHADOW of death and not the valley of death itself. He has promised, when this amazing plan of His is complete, that those who belong to Him will see the full victory. Even death's shadow will be destroyed by the light, love and life of Christ. This same God has promised to hold our daughter in His hands. Thanks be to God!