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.

Snow much Fun

Snow came down! Carter and Luke could barely wait to play in the snow. Carter took off for the big hill in the front yard with the fastest sled. Luke tried the fastest sled and had fun on the way down until it came to an end with a face plant in the snow. Carter stopped running up and down the hill just to make a few snow angels. Luke was not getting down to make any angels for fear that he could not get up with all of his snow gear on.

Painted for Geese

Jeremy and Carter joined others for a goose hunt over the weekend. Carter is always up for a day outside. He thought it was cool to have his face painted up and hang out with the big boys.

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!

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.

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.

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.

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.

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.

Duck, Duck, Goose

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

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