Paint your own Pottery

Carter, Luke, Brayden (Brayden's nurse) and I headed to a local paint-your-own-pottery studio.

Carter and Luke walked around and around picking out the perfect item to paint. Carter finally decided on a plate and Luke a bowl. Carter wanted something big enough to paint all of our names on it. Luke wanted a bowl because he wanted a special cereal bowl (he would eat cereal every meal if he could).

Brayden tried to paint a little plaque, which Carter and Luke had to finish.

Day at the Museum

Since Carter and Luke have seen the Night at the Museum movies, they have been wanting to go. We did not go to NYC we did go to the Smithsonian Natural History Museum in Washington DC.



Carter, Luke, Brayden, Brayden's nurse Christina and I headed in to the museum. All the boys had a great time.

We wandered the museum. Ate lunch and watched a 3D movie about dinosaurs. Of course Carter and Luke said they liked it but they never let go of my hands.

They acted out each dinosaur or animal they saw.

We spent time in the Discovery Room, where kids can touch, smell and look at so many things. Carter and Luke were fascinated by the microscopes. Luke carried around the magnifying glass to look at everything. Brayden got in on the action, really liking the abacus, raking his fingers across it. He even held a skull.

Celebrate 6

Carter celebrated his 6th birthday with his new kindergarten friends and neighbors. The party was all about fall: costumes, decorating pumpkins and candy (only a little bit). The party was a blast. It was interesting seeing Carter interact with all of his new friends. He was definitely a gracious host, making sure everyone had a pumpkin to decorate, handing out the cake before he ate his and organizing everyone for activities.

It was beautiful weather so all of the children could play outside (thank goodness). The moonbounce was pushed to its limits by a crowd of kindergartners. All of the kids looked adorable in their costumes. Carter was Batman and Luke was Robin (or Wobin, as he says it). Brayden will be in costume for Halloween, he slept in his Papa's lap for most of the party anyway.

Carter had a wonderful time, he loves being with everyone. At one point during the party, he came running inside. I asked him what was wrong. He said, "Nothing, I just wanted to tell you my party is fun!"

He had a blast. I know that I am not cut out to be a Kindergarten teacher.

Brayden and the Sweet Potato

Last night we dined at a steak house. It was quite a treat. Carter and Luke ordered up some fruit smoothies. Jeremy and I ordered a big 'ol steak. Brayden was feeling left out and started to fuss. His tube feed was not satisfying enough. Jeremy tried to help him out by giving him a little taste of sweet potatoes. He sucked it right off of Jeremy's finger. Jeremy gave him a little more and then a little more. He ate it right off Jeremy's finger. Before long, Brayden had eaten about half the sweet potato. He came face to face with a big potato and he won! Of course his new shirt is covered in sweet potato. There are little bits of potatoes all over his face! He completed his meal with a taste of ice cream. Mmmm. He was so stuffed he could barely move. He looked stuffed (thus the picture).

Hook Him Up

Brayden is hooked up! April 23rd, Brayden went to Fairfax Hospital for surgery. The surgery was successful and he now has his G-tube. He looked so adorable in his little hospital gown with pants, we had to take a picture. Brayden stayed at the hospital for three days and the nurses made us practice feeding him through the G-tube. We are learning how to hook him up to everything. Right now it is quite a process but once we get the hang of things we should be able to do it with our eyes closed! He is still pretty sore but for the most part he is adjusting pretty well.

While we were at the hospital, the pediatric rheumatologist scheduled some blood work (done during the surgery) and stopped in to see Brayden. After the rheumatologist’s assessment, she found that he does not have Vasogenic edema and that the red hands/feet are probably related to his brain abnormalities; the brain’s difficulty to regulate blood and circulation. We will still see some more doctors to check on some additional possibilities for the red hands/feet.

We are a bit sleep deprived but happy to be home.
Thank you for everyone’s prayers. It went as smoothly as it could go.

Party for Brayden

We celebrated Brayden's first birthday with family and friends. Brayden was loved on by everyone and was wiped out after the party. Jeremy rented a moonbounce for the big kids, who barely stopped jumping just to eat cake. It was a beautiful day!

Brayden is ONE, April 2008 email

Brayden’s 1st Birthday! Watch out this email is a long one (you may want to get a snack or go for a bathroom break); there is so much to say about Brayden!

If Brayden had a mascot it would be the turtle; slow and steady, eventually will get to where ever he is going and keeps a lot hidden in his shell. Our little turtle, Brayden, turned one today! Brayden is slowly developing in his own time. He is doing better with holding up his head. It is still work for him but he is trying. The seizures are doing better and mostly controlled with a couple of medications. His smiles come once in a while so this picture is quiet special. He truly is a sweet little guy. He is getting good at letting us know his likes and dislikes. He always lets his therapists know when he likes the exercise or if he has had enough.

One of the big questions of the year is his condition, handicap, label, etc…
Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.
· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hyplopasia
New ones to add to the list
· To the GI doctor and feeding therapist: feeding difficulties, G-tube
The past 3-4 months Brayden’s growth has really reached a plateau. He is always weighing in around 17 lbs. He may lose a few ounces, gain it back, and stay about the same but no significant growth. He has been going in for feeding therapy once a week and it is slow progress; just like the rest of his development. Brayden has always been successful at nursing but beyond that, nothing has worked really well. He has reached the point where he needs more nutrition. So next week, April 23rd, Brayden will be going to Fairfax Hospital for surgery to get a feeding tube, the G-tube. He will be there for a couple of days to make sure everything is working.
· To the Rheumatologist or Genetic Counseling – Vasogenic Edema or Riley Day Syndrome
Brayden’s hands and feet swell really bad and get very hot. This may also happen on his arms or legs. We are in the process of figuring out what this could mean. Allergies, heart conditions, circulation, among other things have been ruled out. After seeing the neurologist this week she and other neurologists suggested the he be tested to find the cause of this so that he may be treated. This may or may not be related to his apparent brain abnormalities. There are only three pediatric doctors in the area that have expertise in this area; two at NIH and one with INOVA. We are in the process of getting on the waiting list to see them.

Just looking at him, we would have no idea all of that is going on! Brayden has some amazing doctors and therapists that really incorporate all of his special needs. We have been blessed to have these experts that we trust and Brayden is starting to trust.

Are you overwhelmed with information yet? We definitely are and I only give you the watered down version in the emails. We have been overwhelmed with information and emotion this past year. For me, I have retained more information than I ever knew possible and found emotions that I did not even know existed. We are learning to really take things day by day. I am still waiting for all of this to feel “normal” and to get into a routine but Brayden always has more surprises in store.

One year ago today, we had no idea what road was ahead for Brayden and our family. That day we welcomed him with such joy and excitement. The next few days after his birth feel like a preface to a novel that is still be written (only the Lord knows the ending of the story). This is so different from anything I ever imagined for my family. Brayden’s life is changing and shaping our family. I think about what kind of impact this will have on Carter and Luke, they love Brayden so much and want to help in whatever way they can. Carter and Luke love to sing songs to Brayden, thankfully he enjoys it.
Brayden is an amazing gift in more ways than I can express. He is our little turtle; slowly moving ahead and slowly revealing more about himself day by day. We are so thankful for him, this past year and whatever lies ahead.
Thank you for everyone’s support and prayers.

Sincerely,
Carrie Jenkins for
Jeremy, Carter, Luke and Brayden

Prayer Requests:
For Brayden’s G-tube surgery to go well on April 23 and for us to be ready for this change.
For the doctors to figure out the swelling and redness in Brayden’s hands and feet.

Elvis has left the building, Brayden's 1st Haircut

Brayden's Elvis sideburns are no more. Last night Jeremy used the clippers to trim Brayden's hair. We were not quite sure how Brayden was going to handle a haircut since he does not like for his head or face to be touched but he did great. Maybe he liked the buzz of the clippers. The haircut is in small steps; first the Elvis sideburns, next the baby mullet will be trimmed.

I am fearfully and wonderfully made - Brayden's Dedication

Our church, Reston Bible, has an opportunity for us to dedicate our children back to the Lord. We had the privilege of doing that for all three of our boys when they were infants. This time it was Brayden's turn. Jeremy and I shared a testimony during the dedication. Below is what we shared.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
"Praise You In This Storm" by Casting Crowns.

In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. That day was filled with joy and excitement. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it didn’t make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of these test were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.

The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life. We do know that he is and will be developmentally delayed. He is nine months now and still working towards holding up his head. Brayden struggles with seizures and we try to regulate them with medication. He is visually impaired and is struggling with eating orally and may need a G tube for feeding. He was just fitted for his first wheelchair/stroller that will help him get around. Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, feeding therapist, vision therapist.

Two big things we are learning: control and community.
Jeremy and I are both first born, type A personalities and we like to have things under control. When I was pregnant with Brayden, I remember loading the boys in the car one morning and running a bit late. Everyone was buckled in. I had the book bags, lunches, and the gear to get through the day. I sighed and thought to myself “ok, I have this under control”. After Brayden was born, my sighs and thoughts are “ok Lord, you are in control.” We have no control over what Brayden’s capabilities will be. We can do all the things we can to help him but no control with what the outcome will be for him.

Community has played a big part in the past nine months. The moment we found out about Brayden’s brain, prayer went out across the globe. We try to send out emails updating his progress. These emails have been forwarded around the world. We have heard from complete strangers, old friends, new friends, grade school teachers, missionaries, other families that have children with disabilities and countless others. All have offered to help in some way, whether it was a meal, watching the two older boys during doctor’s visit, or prayer. The Moms Connection at RBC has provided meals and check in with us to see if there is any way for them to help. Neighbors have taken our boys to their house when we have had to go the ER for Brayden’s prolonged seizures. A family at RBC, has a child with a brain tumor, continually emails, calls and sends care packages to help lift our sprits. They check to see if we will be at Children’s Hospital simultaneously so we can get together and pray. A college friend’s five year old daughter sent pictures that she drew of Brayden and little notes for the older two boys. The morning of the MRI, we woke to find a voice mail from a friend in Chicago. It was a long prayer for us and Brayden to get through the MRI and the big day. Every time we walk into church someone is embracing us in a big hug and asking if there is anything they can do to help. Our community is continually supporting us.

The dedication is important to us and we applied this verse, which has taken on a whole new meaning.
Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
When Brayden was in the womb, only the Lord knew what was to come. All of the prenatal tests and doctors did not reveal anything. No matter how Brayden progresses, he has been wonderfully made. We know the Lord has a plan for him and our family.

Brayden is 9 months, Jan 2008 email

Brayden is nine months old! This has been a long nine months but some days it seems like it is going by so fast. This month had been full of checkups and appointments.

We met with the neurologist. He is still having seizures so the medication was increased. He went about nine days without any seizures and yesterday he had several which is a rough day for him.

Brayden is struggling a lot with eating. He has only been able to nurse. Thankfully that has been going well. Although, there is concern that he has been aspirating small amounts and we have been instructed to schedule a swallow study for him. Since he is only nursing, we still feed about every 3-4 hours. We have started feeding therapy every week for a period of time. He does not like for there to be anything touching his face, let alone in his mouth. So first we are working on the face before there will be attempts to put things in his mouth. A physical therapist met with us during the feeding therapy. It seems as though Brayden is so overwhelmed with trying to control his body that feeding it just too much for him. Since he is able to nurse, we will continue to do that until he needs more nutrition and calories than I can offer. At that point he will be getting a G-tube for feeding.

Brayden currently has occupational therapy once a week. He is still working on stretching out his tight muscles in his lower back and shoulders. Holding his head up is still a task but he really tries. He also has vision therapy once a month. The vision therapist is great at finding opportunities for us to provide a visually stimulating environment for him without it being to overwhelming. It seems as though Brayden is starting to look at things for a longer period of time (3 seconds or so). In the next couple of weeks he will be assessed for physical therapy and that will then become part of his weekly appointments.

This past Monday, Brayden was fitted for his first Kid Cart, the fancy stroller/wheelchair. He should be getting it in a couple of months. We also ordered a bath chair. Since he is slowly getting bigger, it is harder to bath him without him sitting up so the bath chair will help.

Today was the pediatrician visit for the nine month check up. Brayden’s head has grown less than 1/8 inch, we would like for it to grow more. He is grown about ½ inch. He has not gained weight from a couple of months ago (hard for me to believe) and we even tried different scales at the doctor. He will be checked again in a couple of weeks. We are not quite sure why he has not grown much. It could be because of medications, feeding or just something with the way is brain is functioning right now.

Brayden continues to love his daddy. Jeremy can calm him down better than anyone. Bradyen is starting to get comfortable with his therapists and seems to realize who they are and he recognizing me for food.

This month has been busy. Carter and Luke do not seem to notice. They have been able to go to family and friend's houses during some of the appointments, otherwise they are in preschool. Luke's favorite place to go is Great-Grandma Jenkins house. There, he is spoiled (as only a great grandmother can do) and plays with his Aunt Janine. Luke always manages to come home with bag of cookies. It is great to know that the boys are being taken care of so that we can concentrate on the doctor visits.
Carter has recently been very good with helping to soothe Brayden. He talks softly in his ear and gently pats his stomach, which Brayden really likes. Luke, on the other hand, is not so gentle although he tries.

The next few weeks we will have the ophthalmologist, swallow study and the rehab doctor, along with he normal weekly therapies.

Please continue to pray for his seizures to be controlled, his eating and vision to improve, and to gain more control over his body. Amazingly Brayden is a very easy baby. All of these appointments and people picking at him do not seem to bother him too much.

Thank you for your continued support and prayers.

What's on Brayden's Mind? Dec 5th

Brayden went in for another EEG to look at his brain activity. We were supposed to have a meeting with the neurologist but the inclement weather and traffic caused us to miss the appointment. A usual 50 minute drive turned into a 2 hour and 20 minute drive. We did arrive in enough time to have the EEG at Children's. Brayden does not like for his head or face to be touched by anyone at anytime so we knew that the EEG was going to be a challenge. Over 25 electrodes needed to be placed on his head. He fought the tech, Jeremy held him down and I held his face. He wore himself out and rested once all of the electrodes were place. Once all are on then he is watched for about 30-40 mintues. The fun part is getting all of the gel/paste off of his head.

We have not heard all of results of the EEG results yet. We did get a brief message from the neurologist which said it looks like his it not having infantile spams, which is an answer to pray. The infantile spams are a bad seizure and hard to control with medication. The EEG did show some activity but we are waiting for the full details from the doctor.

UPDATE: We talked with the neurologist. There are no signs of infantile seizures. The EEG showed lots of abnormal activity on the left side of his brain. We always assumed that this was the most effected side because of the way his seizures look. The doctor will continue to watch him over the next several months. The current goal is for him to be seizure free for one month and then we could start bringing him off of one of his medications.

Brayden medical update

Brayden’s days of doctors…
Brayden saw Dr. Im. We are looking for him to be the doctor that will oversee Brayden’s overall care. The pediatrician does “normal” baby things, neurologist works on the seizures, occupational therapist works on head and hand movement, etc. Hopefully Dr. Im will help us make sure we are getting the proper care for Brayden and make sure we have all of the bases covered.

Dr. Im was encouraged to see the Brayden was interactive, making noises and stopping to listen when others were talking. He suggested that we stay with the current plan for Brayden. He also wrote a prescription for Brayden to get a Kid Cart, basically a combo of a stroller/wheelchair (if you have seen Justice Coleman’s, it will be something like that). This device will be made to fit Brayden and his needs. We are not quite sure what is involved in getting one but we will be figuring that out soon.

Brayden had a vision assessment through the state’s blind and vision impairment program. The woman handling the assessment felt as though he is seeing something but very little as this point. She tried several tricks to test his vision, only responded to maybe one or two things. Brayden’s occupational therapist was part of the assessment. She suggested that he could have one visit a week, three times for OT and one for vision therapy, in a month. We have to get the application in and approval from the county/state before we start the vision services.
To explain Brayden’s sight problem…
His eyes are perfectly normal. They function just fine. The nerve (optical nerve), connecting the eye to the brain, that sends the signals to the brain is abnormal and the part of the brain (occipital lobe) that reads those signals is severely abnormal. We have to wait and see if and when Brayden’s brain will compensate and be able to make sense of what the eye is seeing. It seems as though we will not know much until Brayden can communicate better to help us understand what he is actually seeing.

I talked with Brayden's neurologist about the prolonged seizure . We are going up continue with his current seizure medication, Trileptal and add another one, Keppra. We are going to stay about the same amount for the Trileptal. Brayden has reached the maximum dose for that medication without having too many side effects. Then we are going to increase the new med, Keppra, over the next several weeks. At the end of the month we will have an office visit with the neurologist to go over the medications and his seizure treatment.
The neurologist also gave us a prescription for medication that we can give to him in case of another prolonged seizure. We can then treat him at home without having to go to the ER. As we have learned not too many people know what to do with a baby that has neurological problems and seizures.
Hopefully Brayden will adjust well to this new medication and the excitement around here will slow down.

Brayden's adventure to the ER

Apparently Brayden thought things around here were a bit boring so he decided to shake things up yesterday. I went in to wake him up and found him having a seizure, what I thought was a "normal" seizure for him. I picked him up and brought him into our room, the seizure did not stop. He would start to come out of it and then go back into a seizure again. I tried feeding him and giving him medication but I could not even get his mouth open.
After about 10-15 minutes I called Jeremy. He rushed home and we called the neurologist at Children's Hospital. She told us to call 911 and get him to the ER.

The ambulance came to get Brayden but we had to wait for the medic to arrive as well. The teams that arrived were more freaked out than we were. You say a baby is having seizures and people really start moving. By the time we arrived at the Loudoun ER, Brayden was still coming in and out of seizures. At this point he had been coming in and out of seizures for about one hour. His typical seizures last only 30 seconds. He was given an IV and eventually started Ativan which knocked him out and stopped the seizures. He slept for a couple of hours. Jeremy and I woke him up to feed. Brayden nursed really well but shortly after started twitching again on half of his body. It was decided to give him another dose of Ativan (half a dose). We waited. Again he started twitching. He was given another medication, Fosphenytoin, that is in his system for 24 hours. All of the seizures and twitching stopped. The doctor at Loudoun was great. She was in constant contact with the neurology department at Children's Hospital. The neurologist could immediately pull up Brayden's file and help the Loudoun doctor make the appropriate decisions. After the final medication, Brayden was sent home.

We are not sure what brought on all of the seizures. He had some blood taken to see if there was an infection but everything came back fine. Seizures can be triggered if there is an infection or fever. Brayden did not have either. He slept great last night and is doing fine this morning.

I rode in the ambulance with him to the ER, Jeremy followed behind shortly after sending Carter and Luke to the neighbors house. Warren (Jeremy's dad) came to pick the boys up and take them back to Grandma's house. Carter and Luke spent the day with them and had a wonderful time. When you ask Luke how his day was he says, "I had cake!"

Brayden is going to see his neurologist this week. For now we have increased his seizure medication and we have a dose of some powerful stuff in case he goes into another prolonged episode.

Oh the adventures of Brayden Jenkins. It seems as though he wants to see the inside of every hospital in the metro area, so far we have hit most of them.

Brayden is six months

Brayden turned six months last week. He is definitely growing. He is 15.3 lb. which is 25% for weight; 26 inches long, 25-50% for height. His head is still below 3% in size but it is growing a little bit.

Brayden is working on holding his head. He has good strong days and bad floppy days. Brayden has an occupational therapist work with him once a week. She works on stretching him where he needs it and strengthens where he needs it. Then she leaves activities and positions for us to do with him between the visits. He has mixed muscle tone which basically means that he is very tight in some areas and very loose in others. Some of the newborn reflexes are starting to diminish which is a big step for him. Brayden has started to bring his hands (one at a time) up to his mouth. And starting to use his left hand to grab onto things.

Brayden’s vision has not really improved. He is not fixating on things or tracking anything. He does recognize sound and seems to prefer his daddy's voice. We have seen the ophthalmologist a few times and are in the process of getting a vision assessment through the county so that we can use vision impairments resources, possibly down the road.

Brayden is making small steps to improving developmentally but we rejoice with each small step. His smiles happen few and far between but when they do, the world stops and we take it in.

I have a big thank you to Jeremy for being so supportive. He calls many times a day to check on Brayden (and me). When he comes home he always has some quality daddy and Brayden time. Jeremy continues to be very optimistic and a real strength for me.
Thank you to the Coleman and Pfaff family for answering so many of our questions about anything from doctors to emotions. We appreciate you sharing your journey and experiences with us.

v Please continue to pray for Brayden’s development. Some days I think, come on, it has been six months and we have not seen much. But then I take a deep breath and think, all right it has only been six months.
v Pray for seizures to be controlled. We thought the medication was eliminating all of the seizures but today and yesterday have not been so great. We continue to talk with the neurologist to monitor the seizures and figure out the medication.
v Pray for Jeremy and I to be calm and trust in the Lord. It is starting to become apparent to strangers that things are not quite right with Brayden so we are starting to get strange questions and comments. We appreciate their concern but sometimes to it hard to answer. It is my mother bear coming out to protect her cub.
Thank you to everyone for your continued prayers and support.
Above are some pictures of Brayden. One is of him smiling (he was moving when he did it so it is a bit blurry).

With love,
Carrie Jenkins

Brayden full MRI report Sept 2007

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

MRI brain

Impression:
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 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 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.

Carrie