Thursday, September 27, 2007

Meet me at the Fair

While Jeremy was on the big moose trip, the boys and I went on many adventures. One of which was to the Great Frederick Fair. If you have not gone, you must go. It must be one of the biggest fairs around. We joined the boys' cousins, Mekayla and Kaden, for a fun day at the fair. Carter and Luke enjoyed the animals, rides and sweet treats, while Brayden enjoyed a peaceful nap.


Jeremy's Moose

The 4th annual Newfoundland Moose hunting trip was again successful. I had the opportunity of taking the trophy of a lifetime. I am so thankful that Carrie would allow me some time away to enjoy God’s creation and recuperate mentally. My father, a friend from work and a friend from church joined in this amazing adventure.


Brayden full MRI report Sept 2007

MRI at Children's Hospital
Washington DC
August 31, 2007

MRI brain

Pontocerebellar hypoplasia and agenesis of corpus callosum.
Mild to Moderate ventriculomegaly. Doubtful to represent hydrocephalus, given cerebral volume loss. Correlation with the head circumference is however, helpful.

Technique: Sagittal T1; axial long TR double-echo, T1, and diffusion; and coronal fast spin-echo T2.

History: Absence of corpus callosum, colpocephaly, mild hydrocephalus.

Comparison: None

Findings: The brainstem is small in size. These is absence of the inferior vermis. The cerebellar hemispheres are mildly hypoplastic in appearance. The optic chiasm is small in size. The pituitary gland is unremarkable.

There is moderate to marked cerebral white matter volume loss, more conspicuous posteriorly. Linear band of tissue is noted crossing the frontal horn of the lateral ventricles. These may represent adhesive tissue from prior hemorrhage and/or an infectious process.

Mild cortical irregularity of the right frontal operculum and bilateral sylvian fissures, suggestive of polymicrogyria, is demonstrated. There is very simplified gyral pattern of the occipital lobes. There is associated gray-white matter interface. The latter finding may represent focal pachygyria, rather than polymicrogyria.

There is poor visualization of the internal capsule, suggestive of the delayed myelination. There is no intracranial hemorrhage or evidence of acute ischemic event.

Two parallel and small in length linear areas of flow void signal are seen at the proximal basilar artery, consistent with fenestration.

Brayden September 5, 2007 MRI results

We talked with Brayden’s neurologist today, over the phone. Dr. Change spoke to a few issues that she saw on the MRI. I will do my best to explain. I have taken sections from a website to help with understanding.
Brayden is dealing with:
1. ACC – Agenesis (absence) of the Corpus Callosum
This means he does not have the part of the brain that connects the two hemispheres. It serves as the communication between the parts of his brain. The corpus callosum appears to be completely absent.
With ACC, developmental delays are to be expected.

2. Not much white matter in any part of his brain
“The white matter is the tissue through which messages pass between different area of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves whilst the white matter represents the network cables connecting the computers together.” Brayden’s brain is showing defective myelination. “Myelin made by different cell types varies in chemical composition and configuration, but performs the same insulating function.” The myelin is white looking thus being called the white matter. Brayden does not have a lot of these myelin cells.
Brayden’s brain is not making connections (processing and sending the messages) that are needed. His brain is not laying the ground work for his brain cells to be sending the information around. Brayden’s development, and how much development will take place, is very much in question.

Explanation for what should be happening but Brayden’s brain is not showing much evidence of this:
In the first 10 years of life, your child's brain will have made billions and billions of connections. The connections which are no longer needed will wither away. When a child is a fetus in the womb, the toes and fingers are webbed, and then the webbing dies away as it is no longer needed. The brain develops in the same way: many connections are formed at random, but only the connections that are used will actually remain.
The first year of development is very rapid - any parent will tell you that! You see phenomenal changes in a child: in its behavior, its understanding, and in the way it interacts with the world in the first year of life. After that first year, the brain looks like the brain of a normal adult. By about three, the brain has a thousand trillion connections. From about the age of three to 10, the child undergoes very rapid intellectual, emotional and social development. Think about some of the children you know, and you can see it happening in them.

3. Occipital lobe did not develop properly
The occipital lobe is the part of the brain that is responsible for vision. Brayden’s lobe is completely smooth, it should be wavy, folded in and out (just think of what a brain looks like from your high school biology class).
This is part of the explanation as to why Brayden has not made much progress with focusing and tracking things visually. He makes brief eye contact and then goes on. The doctor expressed concern about him ever being able to fully see.

This is a quick and very elementary explanation, even though the email is quite lengthy, sorry. We are just being to understand the big words, let alone be able to properly explain them. We will be going to the neurologist next Wednesday to look at the MRI and discuss things further. Brayden may also have some blood work done at that time. Brayden is doing better with the seizure medication. Dr. Chang also continues to say that it is great for Brayden to be eating and growing so well. Dr. Chang will be reviewing the findings with other neurologists.

Please pray for us. My hands are shaking as I am typing all of this. We know that we will have lots of challenges in the future. We love Brayden so very much, we want to give him all of the best. Jeremy reminded me several times today, that God does not make mistakes and that He designed Brayden for a specific purpose. Something that is always easier to say when outside of the circumstances. Now that we are in the midst of it, we know that only the Lord has control and knows what the future brings. I just pray that we can take a deep breath and rest in Him.

Carrie Jenkins

Brayden August 31, 2007

Today was successful. Brayden finally had his MRI, to review his brain, at Children's Hospital in Washington, DC. We were one of the first ones in this morning. We got to the hospital at 6:30 and left around lunchtime. Brayden did extremely well. He was not able to eat anything for several hours before the MRI. The MRI was about 1 hour and it took him about 90 minutes to wake up from the anesthesia. When he woke up, he was ready to eat and did so successfully. He seems to have handled the whole morning quite well.
We are now waiting on the results. We put a call into his neurologist to let her know that the MRI was completed. She should be able to view the images from whatever location she may be and call us to give a quick run down. Although we do not know when we may hear from the neurologist, it might not be until next week. Then in a couple of weeks we have an office visit to go through the images and all of the details. We are on another wait and see path, for now.

Thank you, thank you, thank you to everyone for their prayers and support. Today went as smoothly as it could possibly go. Brayden is home and doing quite well, as if this morning never happened. Jeremy and I are still recovering. Carter and Luke have been spending time with both sets of grandparents and from what we hear, they are milking it for all that it is worth.

We will let you know when we have some sort of results.

With much love and thanks,
Carrie Jenkins

Brayden August 16, 2007 email

Hello family, friends, new friends and people we do not know yet but have been praying for our Brayden.

The past several weeks have been a bit of a roller coaster ride and I will try to be brief about all of the events. We went on vacation, which was wonderful. Before we left for vacation, Brayden's seizures were happening several times a day. Being on vacation, out of his normal environment, seem to bring on more seizures. We talked to the neurologist and we increased the dose of medication. Over the next couple of weeks, the seizures have not decreased. Brayden had an appointment with the neurologist yesterday. The neurologist spoke to several issues.
First, we are increasing the dose of medication from 2 times a day to 3 times a day. Hopefully we will see some improvement.
Second, she said that Brayden has a less than 50% chance of ever being completely seizure free. The seizures will just be controlled. Controlled could be one seizure a day, a week, a month, it just depends upon him.
Third, after looking over Brayden there is concern about his muscle tone being too tight, especially in his legs. This means, we should expect difficulty with Brayden’s ability to walk. Brayden has very little head control, basically the amount of control a newborn or one month baby would have and he is now 4 months old. The neurologist wants Brayden to start physical therapy along with occupational therapy.
Lastly, Brayden is growing, eating and sleeping well, which means that his brain has the best opportunity to grow and develop.
The long awaited MRI will give a picture and better understanding of Brayden's brain abnormalities and possible disabilities. We will talk with the neurologist after the MRI, over the phone, and have an office visit a couple of weeks following the MRI.

Brayden went to a pediatric ophthalmologist last week. There has been concern about his vision. He is not making much eye contact and still not tracking. The ophthalmologist found that his optic nerve (the eye's communication to the brain) is smaller and paler than it should be. As for what it could mean, we really do not know yet. Brayden will be spending quality time with the ophthalmologist over the next several months. The ophthalmologist ordered Brayden’s MRI to also take pictures of the optic nerve so that she could get a better picture. Brayden is seeing something. At the visit, he was able to look and focus a little on the drum (a black and white cylinder that spins).

Next week, Brayden will have his 4 month old visit with his pediatrician. His MRI is August 31.

Please pray that we can find the best care for Brayden and seizures to be controlled. Please pray for us to have a calm heart. Each doctor visit seems to come with more news and struggles that Brayden is facing. It is nice to know what we may be dealing with and how we can start doing things for him but it is still hard to hear.
Again, thank to everyone for praying.

Carrie Jenkins for
Jeremy, Carter, Luke and Brayden

Brayden July 18, 2007 email

Lets start with some answered prayers…
Brayden is now 3 months old. Two days ago we finally got him to really smile! The boys and I were playing with him and he actually smiled a few times. He has not done it since but at least he finally smiled a real smile. Once we can capture it on film, we will pass along the picture. There is nothing better than seeing your child smile!
Brayden has been on seizure medication for about three weeks. It has stopped the seizures! In the past week, we have only seen about 2 very, very small seizures. The side effect is that he is extremely lethargic and sleeping about 18-20 hours a day, at three months he should have a lot more awake time. After talking with the neurologist we are going to decrease the dose to hopefully get him more alert and still stop the seizures.

We have recently been meeting with Loudoun County Early Intervention Program. Last week a program coordinator and occupational therapist did an assessment to evaluate Brayden’s development. Today we meet with them to review the assessment and plan for the next steps. Their assessment basically puts him at newborn-1 month developmentally. They look at cognitive, expressive communication, receptive communication, gross motor, fine motor, social/emotional and adaptive skills. Since he is already showing signs of delay, he will be starting occupational therapy. He will have the occupational therapist come work with him once a week, for a while.

We are going to have Brayden’s vision tested. He is not making eye contact but for a very brief moment. He is also not tracking and turning to see things. This could be neurological but the neurologist suggested we go ahead and see an ophthalmologist.

He continues to grow and is doing really well. We just pray that as we get into the swing of things that we can provide him the help that best suits his needs. Carter and Luke are in on the action, they try every day to get Brayden to smile for them. We are smothering him with love.

Hope everyone is enjoying their summer!

Carrie Jenkins

Brayden June 27, 2007 email

Hello Everyone,
Well, we were hoping that you wouldn't really hear from us anymore this summer. We were thinking that things with Brayden would continue to be going really well. We talked with his neurologist for some time yesterday. It has been determined that he is having seizures and we need to start him on medication immediately.

The way that Brayden's body is moving and not moving in certain ways during a seizure, it appears that he is having partial seizures. A partial seizure basically means that the seizure is taking place in one half of his brain. The medication that he will start will determine if it is definitely partial or the whole brain is involved. With the medication, the partial seizures will get better and go away; if the whole brain is involved then the seizures would become worse and he would need more aggressive treatment/medication. We start the medication in very small doses and continue to build up over the next few weeks to the appropriate dose. We will then see the neurologist so that she can check how he is handling medication and what to do from there.

The neurologist was surprised and very pleased to hear that Brayden has grown so much in the past month. That was encouraging to hear. He is our first one to actually have rolls of baby fat, the other two have always been long and lean. He has some very yummy legs!

Please pray that Brayden will do well on the medication and we can figure out the seizures quickly so that he can be treated in the best way possible.

Thank you,
Carrie Jenkins

Brayden June 20, 2007

Hello All,
Brayden is 2 months old. Today he had his 2 month visit at the pediatrician. He is growing!
The official stats: 11.5 lb. (50%), 23.5 inches long (75%) and his head is 13.5 inches (below 5%). His head is growing slowly, at this point there is not major concern. He is not really making eye contact or focusing on things yet and we have not seen the first real smile. The pediatrician wants Bradyen to be assessed through the county program so that he can get into programs that will assist his development.
He might have reflux. He always has his back arched, which could be a sign of reflux or part of his neurological conditions. We are going to try reflux medication to see if that makes any difference. Other than that he is doing really well. He is sleeping great, only getting up once at night and once early, early morning. He really recognizes the boys voices and whenever Jeremy talks to him, he settles down and seems to really listen.
The MRI is still planned for August 31st. For the summer, Brayden will not have anymore doctor's visits.

Thank you, again and again, for all the prayers. Brayden is definitely doing well and benefiting from all of those that care for him and love him.

Carrie Jenkins

These are some pictures of our family last night. We had the opportunity to visit the White House for a picnic with my parents. Definitely my favorite event to attend. The theme this year was New Orleans, thus the beads that everyone was wearing. President Bush held Brayden, only for a second but long enough to get a picture.

Brayden June 1, 2007 email

Hello All,
Brayden did not have his MRI yesterday. We went to Children's Hospital in Washington, DC and waited for his turn. We took him back to get ready with the anesthesiologist. She and the nurse were puzzled as to why he was scheduled for this at such a young age since he is not considered to be emergency. He is so young that he would need to stay at the hospital overnight so that he could be monitored after the anesthesia. We did not know that or prepare for that. All of this would need to be cleared through insurance, which it was not. Brayden could come back for the MRI when he is over 4 months old, then he would not need to stay overnight. We scheduled the MRI for the end of August but waiting to hear from his neurologist to see if he should go in earlier or just plan for it to be in August.
Thank you to everyone that was praying yesterday. For some reason, the Lord did not plan for Brayden to have his MRI yesterday (never our plan, always His). We will let you know more, when we know more.


Wednesday, September 26, 2007

Brayden May 26, 2007 email

Hello Everyone,
Brayden had another EEG yesterday and we meet with his neurologist. It looks like Brayden is not having seizures or spasms. The movements and jerking that we have been seeing appears to be sleep related and he will grow out of it in a few months. Which means that he does not need medication. We still need to watch him and make sure things still seem to remain the same and get better. The doctor has seen both of his EEGs and some video that we made at home of him during some of this movements. She seemed sure that it was all sleep related and nothing to be concerned about. We are quite excited about this answer to prayer!
Brayden also had a VCUG this week to look at his kidneys and all looks good there too. He will be checked again in a couple of months.

A week of good news for our little one. He continues to do well. The neurologist was encouraged by the fact that he gets frustrated with people picking at him and is having normal reactions to his surroundings. The doctor wants Brayden to start making eye contact with us and smile sometime soon, which we would love to see too.

Next week is his MRI at Children's Hospital in DC. The neurologist said that she will call us that evening or the next day to give us a run down of what was found and then we meet with her on June 6th.

Carte and Luke are continued to be spoiled by their grandmothers. Some how Carter persuades Grandma Ellie to make chocolate chip cookies every time his comes over, which we all like because we get to eat the delicious treats!

Have a great weekend, we know we will after a week of good news and answers to prayer!

Carrie Jenkins

Brayden May 18, 2007 email

Hello Everyone,
We do not have really any new information on Brayden. We are still in the process of figuring things out. However, the past several days we have been concerned about seizures. Yesterday, Brayden had an EEG to evaluate the possibilities of seizures. We meet with the neurologist today and still are not clear as to whether he is experiencing seizures or infantile spasms. Either would be treated with medication (infantile spasms are a bit more concerning than seizures). Jeremy and I have to document the times that we see him having a seizure/spasm over the next week. Then Brayden goes in next Friday for another EEG and meeting with the neurologist to determine what we need to do. Also, next week Brayden has a VCUG test to look at his kidneys. There really is not a huge concern about his kidneys but they just want to make sure.
The MRI is still scheduled for May 31st and the follow-up visit to understand the findings is June 6th.
Please pray that the doctors get a good reading from these tests and can determine the best things to do for him right now. And that Brayden, Jeremy and I can keep up the pace that we need to make it to all of these doctor’s visits over the next few weeks. Brayden is doing pretty well with all of these people poking at his all of time (doctors and brothers) but after a long day of doctor visits he is a bit grouchy and I am too!
Brayden is still doing well otherwise. His sleeping and eating is great. He is busy trying to watch is older brothers.

Again, thank you to everyone for their continued prayers for our family.

Carrie Jenkins

Brayden May 3, 2007 email

Hello Everyone,
We want to thank everyone for their support, prayers and love for our family. It is amazing to hear about all of the people that are praying for Brayden.

Brayden is doing really well. He is mastering sleeping, eating and messy diapers. He is doing all of the normal baby behaviors. Brayden is extremely sweet and loves to cuddle. Carter and Luke are enjoying being older brothers. They want to be the first to wake him up in the morning and constantly want to kiss and hug him.

Yesterday was our first neurologist visit. The doctor is part of Children's Hospital with an office in Fairfax. Basically we don't really have any new information. The doctor will have answers for us after the MRI, scheduled for May 31st. We really liked this neurologist. She sat with us and reviewed the head ultrasound. The only information that we have after going over it with her, that it looks like Brayden is dealing with a few brain abnormalities (we were praying that it was only one abnormality). After the MRI, we meet again with the neurologist to discuss the findings and figure out what to do from that point. Even after that, it doesn't seem that we will have answers in terms of the struggles he may have developmentally, mentally and emotionally.

Thank you for your continued prayers. Only the Lord knows what he needs, definitely not us. Thank you for your help and support as we figure out all of this. Below are some pictures. And yes he looks like Jeremy.
Sorry we have not had the time to respond to everyone's email. We have had an overwhelming amount of people send messages and information our way. We read all of them and appreciate each message.

Carrie Jenkins

See what's free at

Brayden April 20, 2007 email

Hello all! We just wanted to thank everyone for the outpouring of love, prayer, and concern for our baby boy. We know that God is sovereign and has a specific plan for Brayden and his life. It is not by accident that we have been blessed to have him in our family. It is only by God's grace that Carrie & I could be blessed with such an opportunity.

Here is a brief run down of events:Yesterday, Fair Oaks Hospital performed a head ultrasound to see if Brayden has Agenesis of the Corpus Callosum. In the report provided by the radiologist, it suggests complete absence of the corpus callosum with colpocephaly and mild hydrocephalus. If you understand that, you are really intelligent. Copy and paste the links below into your browser and you can read a description of ACC.

The radiologist recommended an MRI of the head to gain more precise information. We received a recommendation from friends and were able to make an appointment for May 2nd. The neurologist on May 2nd will review the head ultrasound previously performed. This neurologist that specializes in newborn/infants/children wants the MRI w/sedation to be performed at Children’s Hospital in DC. Pray that the Lord will provide an opening for Brayden to receive this MRI as quickly as possible. We are also seeking medical analysis and other tests from the cardiologist, etc. to view the organs of his body and to see if they are fully developed.

We were able to take Brayden home yesterday evening and he continues to feed, cry and do all the normal baby things.We will keep you updated on his progress and as we receive information.

In Him,Jeremy & Carrie