Thursday, January 3, 2008

James Update 1/3/07

An important update: James has been doing some things that made the doctors think he might be having seizures (if you have been keeping up with James' progress you will know this). Because of this, they hooked him up to a take home EEG unit (thingy). Well, an EEG reads the electric impulses of his brain. It can detect seizure activity. A standard EEG test lasts about 20 minutes or so. James already had one of these and the results were normal. The doctors thought it was necessary to have him put on a 24 hour EEG test to get a more thorough examination. This is a necessity because the EEG can only detect the type of seizure they presume he might be having in the exact moment he is having it. Thus, they sent us home with a mobile EEG unit (thingy). We just had it taken off yesterday. Be praying the results come back normal.

The EEG was absolutely inconvenient. His head was completely wrapped in gauze, because the EEG is merely a bunch of long, skinny wires glued to his head. Without the gauze he looks like a machine man. If they didn't gauze his head up, his hands would be so entwined in the mess of wires that not even the jaws of life would get him out.

Before getting the EEG on his head, we had an appointment with the infant developmental team. The meeting was both informative and a bit challenging. It was informative because Kristal and I feel like we know more about James and his needs. It was challenging because both of the doctors on the developmental team spoke with us about James' progress down the road.

Up to this point the developmental doctors have been telling us, "All kids with brain injuries heal differently from their specific injury. There is no way to predict how James is going to jump back from the injury he incurred as an infant. There is nothing we can do but to wait for James to call the shots. James is at high risk for severe motor skill disabilities. We are not sure how severe his disabilities will be, but we know that he will have them."

Well, James is almost 9 months old now and so the doctors on the developmental team are beginning to see exactly how his brain injury has impacted him. As of right now, they are convinced that James' motor skill inabilities are going to be more on the severe side.

This came as a sort of a "rude awakening" for Kristal and I. It is one thing to hear the doctor say, "Your son is at high risk for severe motor skill disabilities." it is another to hear, "Your son is now showing us that he does and will continue to have sever motor skill disabilities."

They are not sure what aspects of James' motor skills will be effected severely, they just know that he will struggle for the rest of his life. Right now they know enough to tell us that his brain damage has impacted him greatly, but they do not know enough yet to tell us precisely where it will effect him the most.

They confirmed that his problems with eating, his inability to hold up his head consistently, his inability to roll over, his inability grasp toys, and his inability to hold concentration are not the result of getting a late start, these things are the result of his brain injury. It is not as if James is too fat to move, or that he is not motivated to grow developmentally, it is that he has had brain damage, which is effecting almost every aspect of his motor development.

The doctor said, "James' issue with holding up his head and eating are not going to be fixed over night. He is not going to merely just learn to do these things--his brain injury is preventing him from doing these things."

One positive thing that the doctors told us is that James' cognitive abilities will not be greatly hindered. The doctor said, "James' ability to reason etc. will be essentially normal. He will probably have missing pieces here and there, but will have normal reasoning abilities, for the most part." This was encouraging to hear.

The developmental doctors are also concerned about his hips. One of his legs seems longer than the other. They are concerned that his hip may not be forming correctly. We are going to look further into this.

James' physical therapist (who is really cool) is looking into getting him some adaptive equipment. Adaptive equipment is designed to help people with disabilities cope with life easier. He will be getting a special adaptive feeding seat, bath tub seat, and things like this.

Although much of this news sounds a bit scary for us, we are happy to at least know where we are heading and how to take care of him.

Yesterday we had to take him back to the hospital to get his EEG unit (thingy) taken off. We were away from the house from 11 am to 8 pm. James did super well. This is the longest he has been away from the house since he went to the hospital before Christmas. He is getting much easier to take in public. This is a huge blessing.

We know that God is super huge and super compassionate and hears our every little prayer on behalf of James. We pray expectantly, knowing that God will only do what is best for His glory and our growth. We know that God is in the business of playing "April Fools" jokes on doctors. Considering the fact that He is infinitely powerful and infinitely compassionate, we know that it would only be for an infinitely good reason that God would not heal James from his brain injury.

We thank the Lord for giving us James. The Lord has already used him in more ways than we can count.


Jessy said...

"Considering the fact that He is infinitely powerful and infinitely compassionate, we know that it would only be for an infinitely good reason that God would not heal James from his brain injury."

I love this. I take sweet rest in this fact about our God.

Brian Keith Phillips said...

We will continue to pray with you and your family.

It is a wonderful assurance to know a God like ours is great in power and more loving than we are and more eager to do what is best for all of us than we are to do it for ourselves.

God must have a special love for you and Kristal to bless you with these trials. I am confident of that.

Anonymous said...

Thanks for the updates. You and your testimony continue to bring glory to our Lord.
Kathy Bacon and family