Thursday, December 27, 2007

Merry Christmas to all and to all a good night




We spent Christmas this year in our sleigh (the Land Cruiser) visiting from house to house. We started the events on Saturday and continued until Tuesday.
Day One
Dinner with my mom’s side of the family. Everyone dressed up and headed for a dinner at South Mountain Inn; a group of 13 adults and 7 children that were in the middle of the restaurant. Thankfully everyone behaved themselves and had a great time.
Later that evening we headed to Uncle Rob’s house. Carter and Luke apparently ambushed any adult that came in the basement with some shooting discs. If Luke’s didn’t work then he came in for a tackle. Luke asked every adult around to get him more dessert. Not many said no to him.
Day Two
Dinner and presents with my side of the family. This is always fun one. Mounds of food and mounds of presents. Carter and Luke marveled at the piles of presents and used all of their will power not to tear into them immediately. Brayden slept peacefully during most of the excitement.
Day Three
Dinner and presents with Jeremy’s mom, dad, siblings and their children. Enchiladas were on the menu for this evening. The children ate their dinner quickly, we sang a few Christmas songs and then the paper was flying. Presents were being handed out, the children were ripping them open, paper was every where, we are all shouting thank yous and “wow look what I got” over everyone. Some how we did all of this in about two hours and managed to squeeze in Jeremy’s father’s birthday presents and cake.
Day Four
The morning at home. Carter sorted all of the presents before everyone was awake. This year the big present was a children’s John Deere Gator. The boys were so excited they drove it around in the cold while still in their pajamas. Brayden had a great morning; thankfully all of the excitement did not seem to affect him much.
Later that afternoon we headed to Grandpa and Grandma Jenkins’ home for more food and presents. I am pretty sure Luke only ate dessert.
After the days of going none stop, Carter, Luke and Brayden went to bed that evening at six o’clock and we did not hear from them until the next morning. We had a wonderful Christmas this year!

Saturday, December 8, 2007

Oh Christmas Tree, Oh Christmas Tree


Always an adventure to cut down the Christmas tree. Carter and Luke run in and out of the trees lines, declaring around every turn that they found the perfect tree and that they would like to "help" cut it down but some how Jeremy does all of the work. The truth is that Carter and Luke are really in it for the free candy canes and hot cider.

Friday, December 7, 2007

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.

Wednesday, December 5, 2007

Luke is 3


Luke celebrated his 3rd birthday, November 30th. Luke was really into the birthday this year. He was counting down the days and now that it has passed he wants to know when the next one is coming.

Monday, November 26, 2007

Daddy got a Deer


Jeremy, Carter and Grandpa (Jeremy's dad) went on a hunting adventure. Carter enjoys every moment of it. He gets hot chocolate, snacks and gets to hang with the big boys. Well this weekend, they got a deer.

Sunday, November 25, 2007

Put the Turkey on











We had a wonderful Thanksgiving. It all started when Jeremy was tucking Carter into bed. Carter rolled toward Jeremy and said, "Daddy I hope it doesn't rain for Thanksgiving." Jeremy asked him what he meant. Carter replied, "If it rains then we can't eat outside like the Pilgrims and Indians."
Thanksgiving morning Carter came running into our bedroom, "Wake up mommy, you have to put the turkey on." I explained to him that his Papa was responsible for cooking the turkey. So we had to call Papa to make sure the turkey was on. Carter was pleased to hear the turkey was cooking. A bit later Carter and Luke settled in to watch the parade on TV.
We headed to my family's house in MD, then to visit my Grampy at the Rehab nursing home and then a quick drop in at the Jenkins gathering to say hello to relatives.
We had a wonderful Thanksgiving and have much to be thankful for.

Wednesday, November 14, 2007

Duck, Duck, Goose


Jeremy and friends were able to Waterfowl Hunt in the Finger Lakes Region in New York.

Friday, November 2, 2007

Happy Halloween


Carter and Luke enjoyed every minute of their Halloween experience. We joined the Coleman family for some Halloween festivities. All of us ventured to the old town of Waterford for trick or treating. Waterford really does it up! It was amazing. Carter and Luke came home with buckets full of treats. Brayden relaxed in the stroller enjoying a nap and taking in some of the excitment.

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

Wednesday, October 24, 2007

Carter's Fall Festival







Carter hosted a Fall Festival in honor of his 5th birthday. A party for the kids! At the house, we had moonbounces, painted pumpkins, pumpkin piƱata and so much more. All of the children came in their best costume. Carter was a cowboy/horse and Luke was a cowboy. Brayden played the role of the sleeping baby and slept through the entire party.

Pumpkin Patch




The adventure of the pumpkin patch! Carter and Luke enjoyed the corn maze (2x). Brayden just relaxed while Jeremy carried him around. A ride on a horse drawn carriage turned into an opportunity for Luke to take the reigns and help the farmer with the horses.




Carter's 5th Birthday



Carter celebrated his 5th birthday on October 8th. Carter had a wonderful time with family that evening celebrating the big number 5! One of his presents was a cowboy hat!

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.

Carrie

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.

Jeremy

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 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.

Sincerely,
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.

Carrie

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.

Sincerely,
Carrie Jenkins


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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.

www.ninds.nih.gov/disorders/agenesis/agenesis.htm
www.emedicine.com/radio/topic193.htm

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