A Brain Storm!!!

I think I have been putting off this particiular entry due to the memory lapse. I beleive that God lets you forget certain things so you can go on with your everyday life.


So, Shane and I had a follow-up appointment with the Nurologist,Dr.Roach, to see what the CT scan showed. (This was one of the few appointments Shane was able to go.) The doctor walked in and started small talk as always and proceeded to tell us about his findings.


It went something like this. "Drake is missing a part of his brain and his brain is not growing." That's all I heard him say as I froze in horror!!! How are you suppose to react to such news ? What questions do you ask? Was this what it feels like when your heart truley breaks?All I could say as I looked at the floor, wishing I could curl up on it and dissapear, was "STOP". I had to stop the doctor in mid sentence. I asked him to please stop talking so I could think. The doctor paused a moment and then proceeded to say he was sorry and that he thought we had heard this information before. It's one of those times I looked back wondering where exactly he thought we had gotten information before seeing him .But I guess there isn't really ever a "good" time to get such news.


The information, as it turns out, was Drake has microcephaly,colpocephaly and agenisis of the corpus callosum.I will define each:


Microcephaly is a neurological disorder in which the circumference of the head is significantly smaller than average for the person's age and sex. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. Two copies of a loss-of-function mutation in one of the microcephalin genes causes primary microcephaly.
Infants with microcephaly are born with either a normal or reduced head size. Subsequently the head fails to grow while the face continues to develop at a normal rate, producing a child with a small head and a receding forehead, and a loose, often wrinkled scalp. As the child grows older, the smallness of the skull becomes more obvious, although the entire body also is often underweight and dwarfed. Development of motor functions and speech may be delayed. Hyperactivity and mental retardation are common occurrences, although the degree of each varies. Convulsions may also occur. Motor ability varies, ranging from clumsiness in some to spastic quadriplegia in others.
Generally there is no specific treatment for microcephaly. Treatment is symptomatic and supportive.
In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.


Colpocephaly is a type of cephalic disorder. This is a disorder in which there is an abnormal enlargement of the occipital horns - the posterior or rear portion of the lateral ventricles (cavities or chambers) of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter in the posterior cerebrum. Colpocephaly is characterized by microcephaly (abnormally small head) and mental retardation. Other features may include motor abnormalities, muscle spasms, and seizures.
Although the cause is unknown, researchers believe that the disorder results from an intrauterine disturbance that occurs between the second and sixth months of pregnancy. Colpocephaly may be diagnosed late in pregnancy, although it is often misdiagnosed as hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). It may be more accurately diagnosed after birth when signs of mental retardation, microcephaly, and seizures are present.
There is no definitive treatment for colpocephaly. Anticonvulsant medications can be given to prevent seizures, and doctors try to prevent contractures (shrinkage or shortening of muscles). The prognosis for individuals with colpocephaly depends on the severity of the associated conditions and the degree of abnormal brain development. Some children benefit from special education.


Agenesis of the Corpus Callosum (ACC) (agenesis comes from the greek word "γεννεσις" meaning birth, creation precluded with "a" which gives the opposite meaning) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. Agenesis of the corpus callosum occurs when the corpus callosum, the band of tissue connecting the two hemispheres of the brain, fails to develop normally, typically in utero, resulting in disconnected brain hemispheres. The development of the fibers which would otherwise form the corpus callosum become longitudinally orientated within each hemisphere and form structures called .Signs and symptoms of Agenesis of the Corpus Callosum and other callosal disorders vary greatly among individuals. However, some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, chewing and swallowing difficulties, early speech and language delays, and social difficulties. Recent research suggests that specific social difficulties may be a result of impaired face processing.[6] Unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger's syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation.

So, I asked some of the inevidable questions. Is he going to be mentaly dissabled, will he ever know that we are his parents, how long will Drake live? I'm not sure weather I really wanted to know the answers to these questions, but I felt the need to ask.Of course there were no answers to those type qustions. He did tell us that Drake might be more prone seizuers, and that his cooridination might be imparied.

Shane and I did'nt talk much on the car ride home. What do you say to the person you love and made all this happen with? After we got home and put the boys to bed, I cried myself to sleep, and the next day and the next. This is where I wish I had been blogging all along so I did'nt have to repeat the news so many times to so many people. It was funny that the same questions came from several people, will he out grow this or is'nt there a surgery to fix it? The answer was and still is NO!
I think this was where I began feeling as if I was losing Drake. My hopes and dreams for him were begining to change, it seemed more like I was'nt sure what my hopes and dreams should be for a child that might never know us as the people who love him more than any other being on the planet. I guess I felt as if I did'nt even know my own son, or even wanted to.
About that time I started talking to an old friend, Taylor Swink. We had been friends through her husband for several years. It seemed she had heard of our trials. Taylor called to see how we were doing and what was going on with Drake. She told me it was okay to take time to grieve for the child we would not have (since I truly felt as if he were dying) .Wow, what a revelation that was for me. I was finally given permision to be sad for Drake, to be sad for me, to be sad for our family, just to be sad. Thank-You!