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, July 5, 2012

3.5 Month Update


First EEG
Well, it has been a while since I last updated the blog. Thankfully, that is because things have been quiet and settling (for the most part). There have been lots of appointments and specialists along the way, but life at home is good.

Not too long after the second hospital stay, Carver had his first EEG to evaluate his brain activity, and everything was somewhat normal- but he did have a little abnormal activity on the right side. A week or so later, he started to run a temperature of 100.5. I was concerned that he might be getting sick, but he didn't have any other symptoms. He did, however, start having seizures- which we thought might be fever-related. They weren't too extreme, but they did happen about every 10 minutes for the first day, and then gradually started getting less and less over the week. His left eye would twitch repeatedly and his left pupil would dilate, and his breathing would become tight and shallow (it was probably on the left side due to the abnormal brain activity on the right). Thankfully, they were short and didn't seem to bother him too much. We expected the fever to go away when the seizures started to go away, but unfortunately, it didn't.

Snoozin'.
We saw the neurologist (finally) and he suspected that the fever is because his brain is not able to regulate body temperature properly. He also thought it might be a good idea to have him on seizure medications, but I thought it would be best to wait and see if they come back first. Thankfully, he was OK with that- and we haven't seen any of those particular seizures for about 3 or 4 weeks now. He does have a different type of "spell" sometimes when he is sleeping. It is occasional, and we're not sure if it is seizure-related or perhaps a type of spasm, but I finally caught one on video and will be showing his neurologist when we go back in 3 months.

Other than what is mentioned above- Carver has been doing phenomenal. He is such a beautiful, lovely baby and continues to just amaze everyone he meets. He has continued to soar developmentally, and last week got above-average test scores on fine motor and exceptional on gross motor. His developmental specialist said he was doing amazing and she was very happy with his development thus far. I will never doubt this little red-haired angel in anything he does. He has given me no reason to!
First smile caught on camera!

The past few weeks, he has started to smile and giggle. It is the cutest thing ever. His smile and laugh are just pure innocence. It just about brings me to tears and makes my heart beam every time he does it. To think that my baby recognizes me... and loves me... and smiles at me... something that they said he may never do. It has truly touched my heart in ways I never thought possible.

We love you baby Carver! Thank you for coming into our lives and being our greatest teacher.

3 Months Old!


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2 comments:

  1. bonnie555August 1, 2012 at 1:46 AM

    ah lauren, i'm so, so happy for you. sending you and your gorgeous, miraculous little ginger baby loads of love! xxxxx
    bronwyn millar

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  2. UnknownApril 18, 2017 at 5:32 AM

    My son 23 has been a victim of Chronic SCHIZENCEPHALY for many years. I am excited to share this testimony as i have been sad and confused for the past 23 years of my son been a victim of SCHIZENCEPHALY. Anti-psychotic medicine they induce psychosis, never helped rather worsened the situation, Homeopathy medication is good but has a lot of limitation too. I looked for solution everywhere all to no avail until I contacted a Herbal Doctor whose medicine works perfectly for him, my son situation has greatly improved which is what I have always wanted. If you have related problem, don't lose hope, contact him (ronniemd70@gmail.com)

    ReplyDelete

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