Tuesday, May 6, 2008

The Infamous Question

No matter where I go, there is one question I am naturally guaranteed to be ask. "How is the baby?" There is no way for the numerous persons asking to know just how difficult of a question it is to answer. I will try to provide a more complete answer for those few who keep updated through this blog. In providing this answer, I feel compelled to make you aware that the answer is unlikely to change - possibly ever.

Rebecca's daily life is something that I am not sure anyone can comprehend. She continues to have consistent and almost constant seizures. This is difficult to understand for those who do not know much about seizure activity other than the dramatic scenes provided in the movies. However, reality is much different. She experiences a wide variety of seizure types, which result from her incomprehensible brain injury. Seizures are merely a "misfiring" of the brain and its neuropathways. Rebecca's brain is severely impaired as a result of the extended time period that it went without oxygen (that she was dead). You have to understand that she was completely dead for at least 15 minutes after her birth and for an undetermined amount of time prior to her birth. There is little comparison for us because persons do not usually become revived after this time. This lack of oxygen and reintroduction of oxygen resulted in detrimental injuries. Even though the brain is suppose to increase in size dramatically over the first year of a child's life, Rebecca likely has less brain matter now than she did prior to her birth. Furthermore, as of the last MRI the brain did not develop the "white matter" necessary for her brain to communicate with her body. As a result, her seizure activity stems from multiple locations in the brain and is very difficult to control.

I believe I had explained that she has infantile spasms (a condition that makes anyone aware of it shudder). This is just a special kind of seizure that is associated with very negative outcomes for a child's development and for the ability to control the seizures. Each of these is evidenced in Rebecca. Her seizures very from her eyes deviating to her head jerking to her legs/arms bicycling. They happen so frequently and so differently that it is impossible to track how many occur in even a day or an hour. Some appear to be a welcomed escape for her while others seem to scare her into a horrific state of fear. A recent trip to the neurologist made me aware that not only does the medical world not expect her to ever be seizure-free, but it appears that the physician does not necessarily expect them to be any more controlled than their consistent and current state. Eventually, it is expected that the infantile spasms will transform to a syndrome that is characteristic of multiple and varied seizures that are potentially far worse in presentation than she currently experiences. Furthermore, the longer the infantile spasms occur without response to treatment, the worse the prognosis is for seizure activity and developmental outcomes. Rebecca has had these spasms without improvement since she was 5 months old.

A recent trip to the eye doctor also revealed that Rebecca is "not processing visual stimuli," as we had expected. Translation, she is not seeing anything. The doctor informed us that this is due to either the constant seizure activity masking processing abilities or to a lack of ability to process visual information in the brain as a result of its injury. Rebecca also has problems with congestion that is interfering with her ability to eat. She has a blackened tooth and tongue as a result of all the medication she takes. Rebecca has not yet smiled or indicated any enjoyment of life. She has no purposeful movement, and her muscle tone increases (tightens). We have an appointment tomorrow to determine how she is processing auditory information. We do know that she startles to loud sounds, but does not process the information to the point that she can orient toward sound.

I believe that this is a fairly full account of "how Rebecca is doing". Having said all this, it is impossible to convey the emotions of a mother's heart. I love her dearly. I am glad I can hold her, am saddened by her pain, and am aggravated when she does not allow my kisses (which is most of the time). She is able to communicate her emotions very clearly in spite of an absence of words or smiles. If you doubt this, come by when she is getting her medicine. You don't even need to come in, you will hear her communicating from the street. However, it does seem to be the worst kind of punishment to have to wait for heaven to completely meet her, but I believe we will recognize each other. As many of you know, my husband says our time here is like "the dot" and our time in heaven like "the line". I will have spent far more time with her in heaven than we can imagine here in the dot. God has assured me that she will be in heaven waiting, and I believe that part of her already is. As for my other girls, they have the opportunity to choose their eternal destiny. I can only pray that they will join their baby sister in heaven. I trust that in the presence of God's glory, we will be hard-pressed to mourn the experiences we missed with Rebecca during this mere dot.

After reading this, I am likely to get the other infamous question - "How are you doing?" I fear I have no good answer other than I am not doing anything. It is through the grace of God alone that I am able to breath, to stand, and to act. Sometimes I feel as if I am the silver being purified, but as long as God the Father is the silversmith I am in good hands. One thing is certain, God is still in control.

P.S. This is a formal announcement that Ryan appears to have hijacked my blog as a result of my neglect and a formal apology for the picture he posted (which will be removed) of me on the eve of the greatest sickness I have had in 15 years.