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