Thursday, July 9, 2009

Update and Prayer Request for Jamesy

Well, it is time for an update regarding James. There is quite a lot of new news. First of all, Kristal and I must thank you all for your continued prayer on James' behalf. God has been gracious to us.

1. James has progressed in many ways. His ability to use his hands with accuracy has improved immensely. He is ultra-impressive with his ability to give high-fives, and he has also learned how to wave hello and good bye! His ability to hold up his head is still improving as well. He is also learning to communicate with us much better. He is in the beginning process of forming a few words (like mama, dada, grama, gampa, more, etc.). His words are not well formed, but the intentionality of what he is trying to say is clear. Furthermore, one of the things we have noticed is that he is starting to like new cartoons, but for a very good reason. The reason he is preferring different cartoons is because he is getting to the point where he can follow a story line. There is much more that could be said in regard to James' progress. We attribute these blessings to the God who heals both according to the natural processes that he infused into his creation and according to his supernatural intervention.

2. We do have new information regarding James' brain activity. James hasn't been sleeping through the night now for about a month and a half. It appeared to Kristal and I that when he woke up in the middle of the night that he was wanting to fall back asleep but couldn't because his body simply wouldn't let him. His body was jerking and he was altogether spastic. Well, James' neurologist decided that he wanted to get an overnight EEG (a study that tests his brain activity). We came up to the hospital yesterday, they put the EEG leads on his head and we stayed the night in the hospital with a camera on James all night. This morning the neurologist read the EEG report and had quite a few things to say.

I will be brief: James has had three EEG's prior to this one and the results were much different this time around. The neurologist has been concerned with James' brain activity in the past, but has never had any significant evidence for that concern from the previous EEG tests. This test, however, provided evidence that validated his concerns. This is both good news and bad news. It is bad news because it confirms that there are underlying problems that yield high potential for excessive seizure activity at all times of the day and night, and it is good news because it gives the neurologist specified data that will help him narrow his search for possible causes and other underlying problems. Basically, the neurologist said that James' brain is "spiking" at all times of the day and night. He said that these "spikes" are indications that James' body is wanting to have a seizure. He suggested that the spikes occur when all the neurons in his brain fire together at the same time, which is highly abnormal. He said that the EEG revealed that his brain was spiking almost every second of the night (literally). In other words, James is always on the verge of seizure activity, throughout the greater part of the day and almost every second of the night.

Praise the Lord that he hasn't had any full blown seizures (except for one time--last August when he was coming out of anesthesia after surgery; and he does have continual epilepsy throughout the day evidenced through staring spells and spastic, uncontrollable movements when he is overwhelmed). However, this is alarming news for us--as well as for the neurologist (who was quite puzzled and concerned). It is a confirmation of what we have seen, but it is not necessarily the best news in the world. The abnormal activity is much more frequent and much more drastic than we were expecting. The one thing that concerns the neurologist is that James' brain activity is alarmingly worse. Because of this, he believes that the next step is to continue testing for metabolic disorders. He is also put him on a new seizure medicine.

We praise God that this EEG test caught the underlying problems in James' brain. It is difficult when you know something is wrong and have no data to help you find the root of the problem to deal with it (you also begin to feel something like a paranoid hypochondriac because you are confident that there is something wrong with no technical data to confirm your concerns). Please pray for two things: 1. that the Lord grant the doc wisdom as he does further metabolic testing and 2. that James' brain "spikes" would not turn into actual seizures.

Thank you for your continued prayer and concern.

We are confident that God knows what he is doing.


Laura said...

We love you guys and will pray for your son related to this new data. I can really understand the good and the bad sides of this report. But with God, as you have often said, everything is for good. Thanks for constantly reminding us of that. Jim Elliff

Mary said...

Wow that is A LOT to 'soak in'... it was very interesting to read. Know that all of you are in Howard's and my prayers daily.

Audrey Janes said...

I have been following your blog for a long time and "keeping up" with King James. First, I have been continually praying for James and each of the needs you have shared. Secondly, I am humbled by your passion for the true King of Kings even through the road bumps and struggles He has allowed to be placed in your life. It is so easy to fall into a "woe is me" or a "where are you God?" attitude and You and Kristal have been so strong. Keep up the Amazing devotion to King James AND the King of Kings! We are continually praying for James.
Audrey "White" Janes

Jessy said...

I praise God for His means given to figure out problems and collect data! It amazes me what He has given in terms of gifts, knowledge and abilities - not only to doctors, but to moms and dads. He is kind not to leave us to ourselves.
I rejoice in the overwhelming fact that God cannot and therefore does not make mistakes. Your James is a masterpiece.

bem said...

You and your family will be in my family and my church family's prayers.