All About Carver

Carver was born 2 months premature on March 18, 2012. While in Mommy's belly, he was diagnosed with severe Schizencephaly (a very rare brain deformity) and Hydrocephaly (fluid pressure in the skull). He was born weighing 3 lbs 14 oz, and 16 inches long.

To define Schizencephaly: it is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere are often paralyzed on one side of the body, may have seizures, and may have average to near-average intelligence. Other signs and symptoms may include an abnormally small head (microcephaly), hydrocephalus, intellectual disability, partial or complete paralysis, or poor muscle tone (hypotonia). Treatment generally consists of physical therapy and drugs to prevent seizures. In cases that are complicated by hydrocephalus, a surgically implanted tube, called a shunt, is often used to divert fluid to another area of the body where it can be absorbed.

In Carver's case, there is no significant brain matter on the left side. This means that almost all of his frontal, parietal, and occipital lobes are missing on the left side of his brain. They have been replaced with cerebral spinal fluid. On the right side, there is a very thin layer of brain in the shape of an "O", which is filled with a large amount of spinal fluid. His cerebellum and lower brain (which regulates bodily functions such as heartbeat and breathing) are intact and functioning, although some reports have said it is hypoplastic (which means underdeveloped).

A few days after birth, Carver's head began to swell at a very fast pace. Because of the excessive fluid pressure, he underwent surgery to have a shunt (drain) placed in his head. It is basically a tube that runs under his skin from his skull down to his abdomen. It helps to drain the excess fluid and will most likely remain there for the rest of his life. A few weeks after his surgery, his incision site got a staph infection which put him in the hospital for another 2 weeks (and 2 additional operations).

Because of the nature of his diagnosis, Carver has seizures which have (thankfully) been helped with medication. It is very easy for him to become over-stimulated, which can create stress for him and in turn, cause seizures. He also has microcephaly (a small head due to lack of brain tissue growth) and a little trouble regulating his body temperature (because of his brain condition).

Despite these few downfalls, Carver is doing exceptional! Even though he has only a small amount of significant brain tissue, he passed his hearing and vision tests, he smiles and giggles, he coos and squeals, he can hold his head up and rolls over, and he can grasp objects with his hands. He is doing very well developmentally so far! He is truly a a miracle and has come to be our greatest teacher. Thank you for showing him support and love by following his journey with us!

This blog was created so that others can watch him grow and follow his journey with us. He is beyond miraculous and we want to share his story with the world! Contact us: carversjourney@gmail.com

Carver's Brain

Carver's Brain

Thursday, February 9, 2012

A Week of Hope

I found this image the other day. I randomly came across it, and it really touched my heart.

This week has really been a week of hope for me. I was able to get some amazing persectives and support from family and friends. It gave me a new outlook, as well as a new hope that I didn't have before.

Carver is going to be special. Special to everyone. Not just me, not just his dad or brothers- but everyone in our family (and everyone he meets.) He has something amazing to show us, and no matter what- there is only going to be endless positivity from his existance.

I'm looking forward to meeting him and seeing all of the amazing things he is going to accomplish. It's going to be a wonderful experience and I'm glad we get to share it with him.

We also got great news today! Because of Carver's diagnosis, we are going to be able to get his cord blood banked at no cost. This will allow us to have his stem cells transfused at a later time. There have been some amazing results with other conditions, and we want to take every opportunity we can. Even though it will be quite expensive to do (and our insurance won't pay for it), we might be able to do some fundraising for it. In any case, at least we will have his cord blood banked!

Because of insurance, we're not going to get the 2nd opinion (yet) from the specialist OKC. We've decided to wait until we get the MRI results and go from there. I was able to get the name and address of a specialist at a children's hospital in Boston. He is an expert in this field and will be able to give us a very accurate diagnosis using our MRI results. We will be sending them to him as soon as we get them.

I have a few loved friends who will be sending me some amazing things in the mail. I look forward to getting them and it really warms my heart to see just how kind and compassionate people are when you need them most.
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