I was getting the boys ready for the day. Brayden was in his room with his feeding pump, he was set for an hour. Brayden’s first feed in the morning is sometimes ready before he is. I place him in his little chair, turn on the feeding pump, soothing music and close the door to his room. Many times he will go back to sleep. I was contemplating Carter and Luke’s clothes selection for the day when I saw Brayden’s bedroom door open. I was ready to punish one of the boys for bothering Brayden. I walked in to the room and found Carter sitting beside Brayden. Carter pulled over a stool and put the fish light (the only thing we have seen Brayden glance/try to look at) next to his little brother. Then placed a kick toy in front of his feet and a rattle toy by his hand. Carter brought in one of his workbooks because thought Brayden might want to learn phonics with him. The two of them sat in the room for an hour, just hanging out.
Later that evening, Carter asked if he and Brayden could watch a movie together. Carter asked if Brayden could sit in his lap instead of in his chair.
They love him, they really love him.
Dear children, let us not love with words or tongue but with actions… 1 John 3:18
Thursday, July 31, 2008
Tuesday, July 29, 2008
Wonder not Worry
Do you ever sit and think about the future? About your children’s future?
Trying to see or predict the future is a big money maker. Remember the infomercials for Psychic Friends Network (if you had a TV in the 90s it was hard to miss)? You could call Dione Warwick’s personal psychic for a reading. The majority of magazines and newspaper have horoscopes, ready to tell us our future for love and life. Have you seen a crystal ball or magic eight ball?
Planning for the future is marketed across the country, especially now with so many families in financial trouble. Every morning talk show has segments about establishing ways to save your money for retirement, homes, or a child’s education. Stay up late and watch TV, every other channel has infomercial about planning for you future.
I find it fun to look at my boys and think about their future “What will they look like as grown-ups?” “Who will they be?” Some days I wonder about a list of things: schools, sports, activities, friends, dating, occupation… It is exciting to know that their whole life in front of them and anything seems possible. I have read Dr. Dobson’s Bringing up Boys a couple of times. The first read had an idea that really resonated with me. We are raising our boys not just to be good little boys but good, no more than that, extraordinary men, husbands, fathers and men of God. We are planning for their future by how we are raising them.
Last week the boys and I stopped to visit a friend who just gave birth to their fourth child. The kids were playing and we had a few moments to sit and talk, a rare and not often granted moment. She has a toddler son with Down syndrome. We were talking about our handicap children and how much they change and shape our lives. They change our thinking. We both found that we think about the future for our children but not Brayden and Peter. We do not think about ten years from now or even a couple years from now. Of course we plan for things but not too far ahead. When we first found out about Brayden's brain abnormalities my thoughts, concerns and worries were all over the place. Thinking about the here and now, the future, the future of our family. That quickly settled but sometimes comes back with an ugly appearance. The Lord protects us for thinking and worrying about it. Honestly that part of my thought process is shut down. I know that it could be too painful to even start heading down that path.
It is fun to wonder about the future but not worry.
“Do not worry about tomorrow, for tomorrow will worry about itself…” Matthew 6:34
Trying to see or predict the future is a big money maker. Remember the infomercials for Psychic Friends Network (if you had a TV in the 90s it was hard to miss)? You could call Dione Warwick’s personal psychic for a reading. The majority of magazines and newspaper have horoscopes, ready to tell us our future for love and life. Have you seen a crystal ball or magic eight ball?
Planning for the future is marketed across the country, especially now with so many families in financial trouble. Every morning talk show has segments about establishing ways to save your money for retirement, homes, or a child’s education. Stay up late and watch TV, every other channel has infomercial about planning for you future.
I find it fun to look at my boys and think about their future “What will they look like as grown-ups?” “Who will they be?” Some days I wonder about a list of things: schools, sports, activities, friends, dating, occupation… It is exciting to know that their whole life in front of them and anything seems possible. I have read Dr. Dobson’s Bringing up Boys a couple of times. The first read had an idea that really resonated with me. We are raising our boys not just to be good little boys but good, no more than that, extraordinary men, husbands, fathers and men of God. We are planning for their future by how we are raising them.
Last week the boys and I stopped to visit a friend who just gave birth to their fourth child. The kids were playing and we had a few moments to sit and talk, a rare and not often granted moment. She has a toddler son with Down syndrome. We were talking about our handicap children and how much they change and shape our lives. They change our thinking. We both found that we think about the future for our children but not Brayden and Peter. We do not think about ten years from now or even a couple years from now. Of course we plan for things but not too far ahead. When we first found out about Brayden's brain abnormalities my thoughts, concerns and worries were all over the place. Thinking about the here and now, the future, the future of our family. That quickly settled but sometimes comes back with an ugly appearance. The Lord protects us for thinking and worrying about it. Honestly that part of my thought process is shut down. I know that it could be too painful to even start heading down that path.
It is fun to wonder about the future but not worry.
“Do not worry about tomorrow, for tomorrow will worry about itself…” Matthew 6:34
Thursday, July 24, 2008
Makeover
One of my favorite types of TV shows is anything about a makeover: What not to Wear, Extreme Home Makeover, any talk show doing makeovers. I rarely tune in for the entire show. I only watch the show for the moment they show the before and then…Wow, the after!
We had our own little make over tonight. Brayden’s haircut. This is not his first haircut, it is his third. He has a lot of hair. When it gets long, the hair on the back of his head turns in to a little bird nest. He shakes his head back and forth because he does not know what else to do with it. The result is a knotted mess. The front gets on his face and he cannot push it back.
His before
The haircut is a process. Stress levels are high for Jeremy, the daddy/barber, and Brayden. Brayden fights, fusses, cries and shakes; he tries any tricks he knows to get out of the haircut. I sit him in my lap and attempt to hold him steady. We put him on his side, back, belly and sit him up to try and get all the sides of his head. Let just say hair was flying! Carter and Luke stood by as cheerleaders. “Brayden, it’s okay.” “Brayden hold still.”
We had our own little make over tonight. Brayden’s haircut. This is not his first haircut, it is his third. He has a lot of hair. When it gets long, the hair on the back of his head turns in to a little bird nest. He shakes his head back and forth because he does not know what else to do with it. The result is a knotted mess. The front gets on his face and he cannot push it back.
His before
The haircut is a process. Stress levels are high for Jeremy, the daddy/barber, and Brayden. Brayden fights, fusses, cries and shakes; he tries any tricks he knows to get out of the haircut. I sit him in my lap and attempt to hold him steady. We put him on his side, back, belly and sit him up to try and get all the sides of his head. Let just say hair was flying! Carter and Luke stood by as cheerleaders. “Brayden, it’s okay.” “Brayden hold still.”
His after
I thought makeovers were supposed to be fun. Brayden did not enjoy his make over. But some how after the madness, he settled down and smiled for his after picture (in case you did not know, he smiles do not come very often).
Tuesday, July 22, 2008
One Year Anniversary
Brayden just “celebrated” his one year anniversary for being in the Early Intervention Program. The early intervention provides services to Brayden like the in-home occupational and vision therapy. We have been working with Ms. Pam, the occupational therapist for one year. Brayden has really learned to trust her and for the most part cooperates with the therapy (occasionally falling asleep right in the middle of it).
We started the program when Brayden was three months old; we had very little understanding of Brayden’s brain abnormalities and his capabilities. To start the early intervention program you create outcomes and goals that you would like to see reached over the year. That first session of writing goals, we wrote down “Brayden will sit up and play with toys by 12/07”. One year later, Brayden is 15 months old and we have barely taken steps towards that goal. It is hard to look at those goals and not feel discouraged or defeated in some way. At least there have been small (and I mean small) steps forward and not backward. He is still unable to hold up his head. His newly discovered hands are just now making their way in to his mouth. Sometimes he cannot get fingers in to his mouth and he gets extremely frustrated. His entire right side is not very active so he works more with his left hand and leg. He is starting to explore things with his left hand. He will sit and stroke things with his little fingers.
We started the program when Brayden was three months old; we had very little understanding of Brayden’s brain abnormalities and his capabilities. To start the early intervention program you create outcomes and goals that you would like to see reached over the year. That first session of writing goals, we wrote down “Brayden will sit up and play with toys by 12/07”. One year later, Brayden is 15 months old and we have barely taken steps towards that goal. It is hard to look at those goals and not feel discouraged or defeated in some way. At least there have been small (and I mean small) steps forward and not backward. He is still unable to hold up his head. His newly discovered hands are just now making their way in to his mouth. Sometimes he cannot get fingers in to his mouth and he gets extremely frustrated. His entire right side is not very active so he works more with his left hand and leg. He is starting to explore things with his left hand. He will sit and stroke things with his little fingers.
Now we are given the task write new goals for the next year.
It is a strange task to sit and discuss goals and outcomes for your child. I find it difficult to articulate what we want him to do. The goals I want met are for him to sit up, crawl, walk, be able to feed himself, start talking… All of those are unrealistic. What can I write down? How can we set goals when we have no idea what we are working towards? It has become a task of creating a completely new path that is only Brayden’s. It is really looking small steps; like the new goal is for him to bring his hands together.
I have no idea what can be expected. What is possible? What is Brayden’s potential?
Other parents play with their babies; we do learning programs.
Other kids have brothers and sisters; ours has sibling relationships.
Other babies start to talk; ours is developing his expressive language.
Other kids go to school; ours receives services.
It is a strange task to sit and discuss goals and outcomes for your child. I find it difficult to articulate what we want him to do. The goals I want met are for him to sit up, crawl, walk, be able to feed himself, start talking… All of those are unrealistic. What can I write down? How can we set goals when we have no idea what we are working towards? It has become a task of creating a completely new path that is only Brayden’s. It is really looking small steps; like the new goal is for him to bring his hands together.
I have no idea what can be expected. What is possible? What is Brayden’s potential?
Other parents play with their babies; we do learning programs.
Other kids have brothers and sisters; ours has sibling relationships.
Other babies start to talk; ours is developing his expressive language.
Other kids go to school; ours receives services.
Other kids play and exercise; ours has therapies.
Thursday, July 17, 2008
10 Things I Learned from Brayden's Hospital Trip
1. People do not move for ambulances.
After calling 911, the EMTs arrived quickly and stabilized Brayden for the ambulance ride. At this point Brayden was still having seizures and vomiting. I was instructed to ride in the front of the ambulance not in the back with Brayden. The ambulance lights were flashing, sirens were blaring but the cars were not moving. People move! Just think of it as if it was your child or loved one trying to get to the hospital.
2. Medical students start in July.
Upon arrival at Loudoun Hospital, Brayden's room was filled with eager nurses, doctors and medical students. The doctor later told me that they do not see many "complicated" children at Loudoun so many of them wanted to see the process. Then at Children's Hospital we had daily greetings with medical students. Three doctors with four medical students came in each morning for presentations and questions. They love to ask questions.
3. Children's Hospital transport team is cool.
Loudoun Hospital is not equipped to handle "complicated" pediatric patients. We were scheduled for transport to Children's in DC. Children's Hospital handles their own transport. When they arrived, it was like a scene from the movies. Hear the dramatic music and imagine them moving in slow motion. Four people arrived dressed in red and black, some dressed in transport team jumpsuits. They had their own medical gear and stretcher. They looked very official. People stopped what they were doing and turned to see what was going on. It seemed to be the big excitement for the morning. They loaded up Brayden. Their ambulance is fully equipped not with just medical necessities but a TV and DVD player for children to watch movies during transport.
4. Need for Hospital fund
We put money aside for vacations, home improvements and big items. Who knew that hospital stays require so much. Between the gas from Jeremy and I driving back and forth, daily parking garage fee, cafeteria food (which we could have eaten at Morton's by this point) and snacks, we probably could have gone on a little vacation.
5. You get Hospital slime
Have you ever noticed after a long car ride or flight we just feel a little gross and slimy. Being at the hospital you seem to get the same thing.
6. Sharing a hospital room is no good.
If only we were Brad Pitt and Angelina Jolie and we could rent out the entire hospital wing. Brayden was assigned a room with a roommate. Not only did we have a roommate but the bathroom was shared with the rooms next door to us. That's right, four patients, one bathroom. After hearing some of the sounds coming out of that bathroom, Jeremy and I opted for the bathroom down the hall.
7. Hospitals are void of time
Being the hospital for hours upon hours you loose sense of time. We have no clocks in the room. The tiny bit of sunlight is through a fogged window and overlooks the roof. Hours seem to go by and it has only been minutes. Most hospital stays are all about waiting.
8. I understand too many medical terms
Hearing the nurses and doctors discuss Brayden's condition, tests, blood work was always a blur of big words that I could never understand. This time around, I understood the majority of what they were saying. I had no idea I could retain this kind of information.
9. Blessed to live in Northern Virginia
Living in Northern Virginia, we have options for health care. We have several choices for doctors, specialist and hospitals. People travel to this area for medical needs. We have it in our own backyard.
Jeremy and I have been able to be at Brayden's bedside, someone is there at all times. Many families are unable to be at the hospital, possibly because of location, jobs or other circumstances. Their children are sitting in a room with no parent for comfort or advocating for them. Brayden's roommate was a tiny two month old. His family is unable to be here. They came every few days for just a short time. The nurses do their best to help but it can never be the same as a parent.
10. Blessed to be healthy
Children's Hospital has some of the best specialists around, people come from many different places and walks of life . This hospital is not an easy place to be; just walking the halls or going to the cafeteria you see children hurting, struggling and battling some big medical problems. A child next to Brayden's room would cry out in pain for hours upon hours. It seemed as though the child was in so much pain that he would start screaming and vomiting. It is difficult to hear a child in that kind of pain. You see so many extreme cases. Brayden may not be the bouncing toddler that we thought he was going to be but he is healthy and thriving in his own way. Even this hospital stay was just a small incident in comparison.
Just a few things that we have learned. We are learning more and more each day.
After calling 911, the EMTs arrived quickly and stabilized Brayden for the ambulance ride. At this point Brayden was still having seizures and vomiting. I was instructed to ride in the front of the ambulance not in the back with Brayden. The ambulance lights were flashing, sirens were blaring but the cars were not moving. People move! Just think of it as if it was your child or loved one trying to get to the hospital.
2. Medical students start in July.
Upon arrival at Loudoun Hospital, Brayden's room was filled with eager nurses, doctors and medical students. The doctor later told me that they do not see many "complicated" children at Loudoun so many of them wanted to see the process. Then at Children's Hospital we had daily greetings with medical students. Three doctors with four medical students came in each morning for presentations and questions. They love to ask questions.
3. Children's Hospital transport team is cool.
Loudoun Hospital is not equipped to handle "complicated" pediatric patients. We were scheduled for transport to Children's in DC. Children's Hospital handles their own transport. When they arrived, it was like a scene from the movies. Hear the dramatic music and imagine them moving in slow motion. Four people arrived dressed in red and black, some dressed in transport team jumpsuits. They had their own medical gear and stretcher. They looked very official. People stopped what they were doing and turned to see what was going on. It seemed to be the big excitement for the morning. They loaded up Brayden. Their ambulance is fully equipped not with just medical necessities but a TV and DVD player for children to watch movies during transport.
4. Need for Hospital fund
We put money aside for vacations, home improvements and big items. Who knew that hospital stays require so much. Between the gas from Jeremy and I driving back and forth, daily parking garage fee, cafeteria food (which we could have eaten at Morton's by this point) and snacks, we probably could have gone on a little vacation.
5. You get Hospital slime
Have you ever noticed after a long car ride or flight we just feel a little gross and slimy. Being at the hospital you seem to get the same thing.
6. Sharing a hospital room is no good.
If only we were Brad Pitt and Angelina Jolie and we could rent out the entire hospital wing. Brayden was assigned a room with a roommate. Not only did we have a roommate but the bathroom was shared with the rooms next door to us. That's right, four patients, one bathroom. After hearing some of the sounds coming out of that bathroom, Jeremy and I opted for the bathroom down the hall.
7. Hospitals are void of time
Being the hospital for hours upon hours you loose sense of time. We have no clocks in the room. The tiny bit of sunlight is through a fogged window and overlooks the roof. Hours seem to go by and it has only been minutes. Most hospital stays are all about waiting.
8. I understand too many medical terms
Hearing the nurses and doctors discuss Brayden's condition, tests, blood work was always a blur of big words that I could never understand. This time around, I understood the majority of what they were saying. I had no idea I could retain this kind of information.
9. Blessed to live in Northern Virginia
Living in Northern Virginia, we have options for health care. We have several choices for doctors, specialist and hospitals. People travel to this area for medical needs. We have it in our own backyard.
Jeremy and I have been able to be at Brayden's bedside, someone is there at all times. Many families are unable to be at the hospital, possibly because of location, jobs or other circumstances. Their children are sitting in a room with no parent for comfort or advocating for them. Brayden's roommate was a tiny two month old. His family is unable to be here. They came every few days for just a short time. The nurses do their best to help but it can never be the same as a parent.
10. Blessed to be healthy
Children's Hospital has some of the best specialists around, people come from many different places and walks of life . This hospital is not an easy place to be; just walking the halls or going to the cafeteria you see children hurting, struggling and battling some big medical problems. A child next to Brayden's room would cry out in pain for hours upon hours. It seemed as though the child was in so much pain that he would start screaming and vomiting. It is difficult to hear a child in that kind of pain. You see so many extreme cases. Brayden may not be the bouncing toddler that we thought he was going to be but he is healthy and thriving in his own way. Even this hospital stay was just a small incident in comparison.
Just a few things that we have learned. We are learning more and more each day.
Tuesday, July 15, 2008
Quiet moments
Some one asked me the other day if all of this was hard. I must admit that for the most part it is not that hard. I definitely have days when I feel like I cannot take all of the appointments, medications, therapies, etc anymore. We love Brayden. As a parent you do what you have to do and quickly adjust. Having seizures, going to the hospital, riding in ambulances are all stressful situations but I can get through those. I get in to a mode of doing what we need to do, not a time for panic, worry or tears. It is the quiet moments that are the hardest; watching him sleep, sitting silently in his room, he is so helpless. It becomes a moment to breath and take in what is really happening. The past few days have definitely been on the top ten list for Brayden’s adventures. The hardest time has been driving home alone, without my baby. Jeremy is staying with him (I am a little nervous about staying during this hospital stay…a story for another time). I get home, my older boys are with family, Jeremy and Brayden are still at the hospital. The house is quiet and still. It is not a quiet and still when I can rest. I pace the house, read magazines, watch TV, blog but I cannot rest in this silence. The quiet times are the hardest.
Monday, July 14, 2008
Brayden at the Hospital
Thursday, July 17 - Brayden is home!
Brayden is home! After fours days of the hospital we are happy to be home. Brayden is doing extremely well. It was determined that Brayden’s stomach does not empty at a normal pace. It empties much slower (another reason he is our turtle). We are changing the formula he receives via G-tube and doing very small quantities; during the night he will be getting a very slow feeding (from 9 p.m. to 5 a.m.). The seizures are under control. The seizures became a problem because he was unable to keep the food and medications in his stomach. We tried the new formula, new amounts and medications at the hospital. He seemed to tolerate it just fine. We have added two more medications to help his stomach and two more specialists to add to his ever growing list.
All in all, things went as smoothly as a hospital visit could go. Once again, Brayden is a real trooper and does not let any of this bother him.
When we pulled up to the house Carter sighed, “It is good to be home”. I could not agree with him more.
Thank you for all of the emails and phone calls. A big thank you to my mom for taking the boys for the week; the Pavolics for rushing down and taking the boys to their house the morning the ambulances came to the house; Emily Jarvis for watching the boys this afternoon; Heather and Brian for watching the boys this evening (especially the ice cream treat) and a big thank you for everyone’s prayers. We have wonderful friends, some we have actually met and others we have not met yet; friends that we can count on for support and prayers. It is a wonderful blessing and very humbling.
Wednesday, July 16 Update
Brayden spent the day strictly on IV fluids and no food by G-tube. The GI consult came to see him this morning. The doctor ordered him a milk study. Brayden was sent to Radiology. They give him the formula (about 5 oz through the G-tube) watch it for one hour. Then a couple of hours later they look at his stomach again to see how it emptys.
At this point we are not sure what the results were but the doctor said that Brayden could be started on very smalls amounts of a different formula to see how he handles it.
Brayden seemed to be feeling good today. He was moving around a bit, making happy noises and let us hold him several times for a while. He had one large seizure but that was all. If he is able to keep down the new formula, he could be sent home tomorrow late afternoon. We will probably be making changes to the formula and method/time that he receives formula once we are home. But we will know more about that tomorrow.
Until next time...
Tuesday, July 15 Update
Brayden is still at Children's Hospital. He had a better day; a couple of small seizures and vomits. He started today receiving some Pedialyte via G-tube but after vomiting he has been ordered, no food for a period of time. He will be started, sometime in the morning, with Pedialyte in small amounts. We spoke with a few neurologists today and they found that the seizures were being controlled; we agree his seizures are being managed just fine. We are still waiting for the GI doctor to see Brayden. The GI doctor will hopefully provide some answers to the vomiting problems. He is currently receiving fluids and medications via IV.
By the afternoon Brayden was starting to act more like himself and making a few of his happy noises. When I talked to Jeremy last, Brayden was sound asleep.
When we have time, I will go into more detail about this adventure. Thank to everyone for your emails, phone calls and prayers.
Apparently Brayden needed a little more attention…
Today we had to take Brayden to the hospital. The past couple of days he had a couple dozen seizures and been vomiting. This morning I went to check on him. He was having a seizure and had vomited blood and continued to do so the next couple of times he vomited. We called 911 and he was taken to Loudoun ER. He was stabilized there and later in the afternoon was transferred to Children’s in DC. We were unable to be transferred to Fairfax because there was no room. Thankfully Children’s was able to admit him.
A bit of history, Brayden has been vomiting on and off for the past 4 weeks, once or twice a day and then not at all for a few days. It has been about 10 weeks since he received his G-tube (feeding tube) so we do not know if it might be related to the formula or if it could be something else. We have been in the process of trying to figure out the reason. This weekend we were not able to get the seizures and vomiting under control so we ended up at the hospital.
He is currently sleeping with a heavy dose of Ativan and another seizure medication. He will be receiving little bits of Pedialyte via G-tube through the night to see how he handles it. We are not sure what tomorrow may bring. For now, he is resting. It looks like the plan may be to get him stabilized and keeping some food down. He could be discharged tomorrow. Then on Thursday we are scheduled to see a GI specialist (at another hospital) to discuss the vomiting.
Please pray for Brayden to handle all of this; that all of the vomiting and seizures have not caused any damage. Pray that the doctors will be able to find a cause and solution.
My parents are watching the older two boys so I am sure that are being spoiled!
Thank you for your prayers.
Sorry for the bad grammar and probably spelling, I am tired.
Carrie
Brayden is home! After fours days of the hospital we are happy to be home. Brayden is doing extremely well. It was determined that Brayden’s stomach does not empty at a normal pace. It empties much slower (another reason he is our turtle). We are changing the formula he receives via G-tube and doing very small quantities; during the night he will be getting a very slow feeding (from 9 p.m. to 5 a.m.). The seizures are under control. The seizures became a problem because he was unable to keep the food and medications in his stomach. We tried the new formula, new amounts and medications at the hospital. He seemed to tolerate it just fine. We have added two more medications to help his stomach and two more specialists to add to his ever growing list.
All in all, things went as smoothly as a hospital visit could go. Once again, Brayden is a real trooper and does not let any of this bother him.
When we pulled up to the house Carter sighed, “It is good to be home”. I could not agree with him more.
Thank you for all of the emails and phone calls. A big thank you to my mom for taking the boys for the week; the Pavolics for rushing down and taking the boys to their house the morning the ambulances came to the house; Emily Jarvis for watching the boys this afternoon; Heather and Brian for watching the boys this evening (especially the ice cream treat) and a big thank you for everyone’s prayers. We have wonderful friends, some we have actually met and others we have not met yet; friends that we can count on for support and prayers. It is a wonderful blessing and very humbling.
Wednesday, July 16 Update
Brayden spent the day strictly on IV fluids and no food by G-tube. The GI consult came to see him this morning. The doctor ordered him a milk study. Brayden was sent to Radiology. They give him the formula (about 5 oz through the G-tube) watch it for one hour. Then a couple of hours later they look at his stomach again to see how it emptys.
At this point we are not sure what the results were but the doctor said that Brayden could be started on very smalls amounts of a different formula to see how he handles it.
Brayden seemed to be feeling good today. He was moving around a bit, making happy noises and let us hold him several times for a while. He had one large seizure but that was all. If he is able to keep down the new formula, he could be sent home tomorrow late afternoon. We will probably be making changes to the formula and method/time that he receives formula once we are home. But we will know more about that tomorrow.
Until next time...
Tuesday, July 15 Update
Brayden is still at Children's Hospital. He had a better day; a couple of small seizures and vomits. He started today receiving some Pedialyte via G-tube but after vomiting he has been ordered, no food for a period of time. He will be started, sometime in the morning, with Pedialyte in small amounts. We spoke with a few neurologists today and they found that the seizures were being controlled; we agree his seizures are being managed just fine. We are still waiting for the GI doctor to see Brayden. The GI doctor will hopefully provide some answers to the vomiting problems. He is currently receiving fluids and medications via IV.
By the afternoon Brayden was starting to act more like himself and making a few of his happy noises. When I talked to Jeremy last, Brayden was sound asleep.
When we have time, I will go into more detail about this adventure. Thank to everyone for your emails, phone calls and prayers.
Apparently Brayden needed a little more attention…
Today we had to take Brayden to the hospital. The past couple of days he had a couple dozen seizures and been vomiting. This morning I went to check on him. He was having a seizure and had vomited blood and continued to do so the next couple of times he vomited. We called 911 and he was taken to Loudoun ER. He was stabilized there and later in the afternoon was transferred to Children’s in DC. We were unable to be transferred to Fairfax because there was no room. Thankfully Children’s was able to admit him.
A bit of history, Brayden has been vomiting on and off for the past 4 weeks, once or twice a day and then not at all for a few days. It has been about 10 weeks since he received his G-tube (feeding tube) so we do not know if it might be related to the formula or if it could be something else. We have been in the process of trying to figure out the reason. This weekend we were not able to get the seizures and vomiting under control so we ended up at the hospital.
He is currently sleeping with a heavy dose of Ativan and another seizure medication. He will be receiving little bits of Pedialyte via G-tube through the night to see how he handles it. We are not sure what tomorrow may bring. For now, he is resting. It looks like the plan may be to get him stabilized and keeping some food down. He could be discharged tomorrow. Then on Thursday we are scheduled to see a GI specialist (at another hospital) to discuss the vomiting.
Please pray for Brayden to handle all of this; that all of the vomiting and seizures have not caused any damage. Pray that the doctors will be able to find a cause and solution.
My parents are watching the older two boys so I am sure that are being spoiled!
Thank you for your prayers.
Sorry for the bad grammar and probably spelling, I am tired.
Carrie
Saturday, July 12, 2008
Signals
When the light is green you go.
But what do you do
When the light turns blue
With orange and lavender spots?
Signals from A Light in the Attic
Signals, signals, signals we all watch our children for all sorts signals. We are looking for things that will make them smile. We watch them for signs of being sick or tired. The first couple of years we learn more about them and are able to tune into their needs just by a few signals they may give us. Rubbing the eyes - tired; Crying - hungry or hurt; Smiling - enjoyment: all pretty standard signs that we know and understand. Just google baby signals and there are plenty of websites and books to help you understand your baby's signals.
Brayden's signals are not so obvious and definitely not in a book. Several months ago I took Brayden to the pediatrician because he was rubbing his left ear. Of course no ear ache, he discovered he had an ear and that was his way of exploring. One signal we have learned to understand is that he shakes his head from side to side (like saying no) when he is overwhelmed or just had too much.
We are constantly looking for opportunities to help Brayden relax. His little legs and back are extremely tight. He spends many hours with the therapist trying to help him relax. Last night we tried the pool at Uncle Russ and Aunt Sandy's home. At first he did not like the cool water but then settled down. All signs point to him being relaxed and enjoying the water. He looks so relaxed but feeling his legs, they were still so tight.
Brayden's smiles are coming more frequently. However he can go days without cracking so much as grin. We have yet to understand why he has days that are full of smiles and then go for sometime without any.
He is still struggling with vomiting. The doctors have asked us tons of questions about the vomiting. Trying to understand if there is some sort of trigger or sign as to why he might be vomiting. I cannot find a consistent reason. It would be nice to have some sort of signal so we can put him in a safe vomit area (preferably tile flooring or on some towels for easy clean up). We will be seeing another specialist to discuss.
We know that red means stop and green means go. But what can we do with the spotted signals? Brayden's signals are spotted, stripped, zig-zaged... And we are trying to understand.
Wednesday, July 9, 2008
Expiration Date
Just as a warning, this is bit of a heavy topic. It has been something that continues to come up lately. I was not even sure if I should blog about it but I wanted to know your thoughts, so here it goes...
The past month, we have heard about and watched families grieve the loss of loved ones (as I mention these people please pray for the families). Our pastor recently lost both his parents, a family at our church lost their husband/father to a heart attack, our neighbor’s mother lost her battle with cancer and my mother-in-law’s cousin passed away because of a heart attack. It seemed as though every week we have been hearing about a family’s loss.
We pray for families that are dealing with a life threatening illness; Daniel, a sweet toddler, who is fighting a brain tumor (his parents have been a wonderful support for us, I will have to blog about later), missionary family whose wife/mother is fighting cancer, we watch my grandfather fight the effects of Parkinson’s, all of them fighting a disease that is wreaking havoc on their bodies.
The past month, we have heard about and watched families grieve the loss of loved ones (as I mention these people please pray for the families). Our pastor recently lost both his parents, a family at our church lost their husband/father to a heart attack, our neighbor’s mother lost her battle with cancer and my mother-in-law’s cousin passed away because of a heart attack. It seemed as though every week we have been hearing about a family’s loss.
We pray for families that are dealing with a life threatening illness; Daniel, a sweet toddler, who is fighting a brain tumor (his parents have been a wonderful support for us, I will have to blog about later), missionary family whose wife/mother is fighting cancer, we watch my grandfather fight the effects of Parkinson’s, all of them fighting a disease that is wreaking havoc on their bodies.
These circumstances can raise many questions.
The last couple of months, I have finally had enough nerve to start reading books, articles, websites about having a child with disabilities, brain abnormalities, seizure disorders…So many families trying to find their way in all of the information that is handed to them. Several of the families have been told how long to expect their children to live. Being told “these sort of kids” live into their teen years. Jeremy and I talked about this. Not one of Brayden’s doctors has ever mentioned anything about his life expectancy. We never even considered asking the question. We know that seizures put him in danger but thankfully, for now, his seizures are not at that level. We do not know, nor do we want to know, if his brain abnormalities, seizures or feeding difficulties will shorten his life. We need to know the severity of what we are dealing with but we do not need to hear an age or time that could be Brayden’s expiration date. Do not worry, Brayden is not dealing with anything life threatening but having a child with severe disabilities definitely raises the question. I know that we are no where near the difficulty level of dealing as to the families that have experienced a loss or serious disease.
I think about Jeremy’s Aunt Janine, who has Down Syndrome. Many years ago they were told she would not live past her teen years. Well, she is now a thriving and full of life, forty-something year old.
I think about Jeremy’s Aunt Janine, who has Down Syndrome. Many years ago they were told she would not live past her teen years. Well, she is now a thriving and full of life, forty-something year old.
Knowing Brayden’s life expectancy would not change how we love and care for him.
You always hear the expression “live each day as if it were your last”. Would you want to know your life expectancy, your child’s or your loved one’s? Would it change how you lived? How would it change?
Do you know where you or a loved one would go when they passed away? Please take the time to read this for more information: Focus on the Family - Coming Home or Crosswalk - The Need for Jesus
An amazing read about a mother who lost her baby, a wonderful testimony: Bring the Rain
You always hear the expression “live each day as if it were your last”. Would you want to know your life expectancy, your child’s or your loved one’s? Would it change how you lived? How would it change?
Do you know where you or a loved one would go when they passed away? Please take the time to read this for more information: Focus on the Family - Coming Home or Crosswalk - The Need for Jesus
An amazing read about a mother who lost her baby, a wonderful testimony: Bring the Rain
Monday, July 7, 2008
Closed for Business
Brayden and I have made it through the first week of no nursing. I am closed for business. Brayden seems to have no problem with the transition.
For Brayden's first year, we spent quality time together. By some miracle Brayden was able to nurse successfully from the beginning, in fact better than my other two boys. The first twelve months of Brayden’s life, we spent about 45 minutes together, 5-6 times a day. The only way that he could eat was nursing. He has problems with things touching his face and he tends to push things out of his mouth; bottles, cups, spoons, etc, did not work. Nursing was his only nutrition and a lot of comfort for him. We have no idea why nursing worked and nothing else. We worked with doctors and therapists, no explanation. We considered it to be a miracle, no explanation needed, a little miracle and piece of normalcy in his not so normal life.
Shortly after his first birthday, Brayden got his feeding tube. We were unsuccessful with getting him to eat or drink anything. His growth reached a plateau for over 4 months so we knew that he needed the feeding tube for nutrition and the best possible chance for him to grow and develop, as well as his brain. After his feeding tube, we went down to nursing twice a day. Then the past few weeks has only been once a day. That only lasted a short time; my body was shutting down the milk factory and officially closed for business one week ago (I know this borders on too much information).
The feeding tube, for the most part, has been going well. In about 8 weeks Brayden has gained about three pounds. The doctors are calling that catch up weight; then his weight gain will steady off. Jeremy and I are getting the hang of things. We are pretty comfortable with hooking him up to the pump. The older boys know the familiar beeping sound of the machine and let us know when the feeding is complete. The feeding pump is called a Kangaroo Joey and has a kangaroo jumping across the screen so they love that!
We are having difficulty with Brayden and projectile vomit. No, it is not spit-up; it is projectile vomit, so much that it drips down the sides of the crib. I love my children but I do not handle anything coming out of either end very well. The vomitting has been happening over the past month, 1-2 times a day. We are in the process of figuring out the problem. He has been tested for reflux several times and never showed any signs. The problem seems to be with digestion of the formula he gets through the feeding tube.
Brayden is still doing feeding therapy with a speech pathologist and showing great progress. He prefers things that are a bit heavier, like a pudding consistency. I am going to attempt making baby food for him so that we can really control what he is getting. So if you have any pointers, please pass them along.
Letting go of the nursing has been harder for me than him. I know that I complained about nursing…a lot. I spent hours upon hours sitting in the car feeding him, between doctor appointments, running errands and driving the boys to activities. I listened to more talk radio than I ever knew existed. I sat in the same chair every day feeding him and not being able to tend to my other children. No one could help me watch Brayden, not even Jeremy, because I was the only one who could feed him. That went on for almost thirteen months. Nursing was his only source of food for over a year. It was exhausting. Having the feeding tube has given us a lot of freedom. But letting go the nursing has been a bit emotional for me. It was always a time for Brayden to relax, he spends so much of his day putting a lot of effort into just being. Nursing was his safe area when I could hold him without a fight and he could just nestle in. Nursing has been the only organized activity that Brayden could do, we are working on other things. It is great oral stimulation for him to continually use his mouth, we are finding other ways to help him with this. As much as I loathed nursing him for so long, I always knew that it was the best thing for him and I was really doing something tangible for his well being. I have a bit of guilt letting it go. I also have great hormones when nursing; great skin and hair plus you use a lot of calories just sitting down to nurse. In case you were wondering, I only nursed my other two boys for about 6-8 months. I am not a die hard nursing person so for me to last this long was a miracle in and of itself.
Letting go of the nursing has been harder for me than him. I know that I complained about nursing…a lot. I spent hours upon hours sitting in the car feeding him, between doctor appointments, running errands and driving the boys to activities. I listened to more talk radio than I ever knew existed. I sat in the same chair every day feeding him and not being able to tend to my other children. No one could help me watch Brayden, not even Jeremy, because I was the only one who could feed him. That went on for almost thirteen months. Nursing was his only source of food for over a year. It was exhausting. Having the feeding tube has given us a lot of freedom. But letting go the nursing has been a bit emotional for me. It was always a time for Brayden to relax, he spends so much of his day putting a lot of effort into just being. Nursing was his safe area when I could hold him without a fight and he could just nestle in. Nursing has been the only organized activity that Brayden could do, we are working on other things. It is great oral stimulation for him to continually use his mouth, we are finding other ways to help him with this. As much as I loathed nursing him for so long, I always knew that it was the best thing for him and I was really doing something tangible for his well being. I have a bit of guilt letting it go. I also have great hormones when nursing; great skin and hair plus you use a lot of calories just sitting down to nurse. In case you were wondering, I only nursed my other two boys for about 6-8 months. I am not a die hard nursing person so for me to last this long was a miracle in and of itself.
My nursing days are in the past, officially closed and I am handing in the Hooter Hider (this really is the name of a product; if you are nursing, this is a must have). We are finding new ways for Brayden to eat. I am trying to join that super mom circle of ladies that make their own baby food!
Friday, July 4, 2008
BFF
In case you did not know BFF stand for Best Friends Forever.
Have you ever had some one placed in your life that until many years later, you did not realize why? Possibly a best friend or confidant?
Brayden has his own BFF, Justice. Justice Coleman is a sweet two year old girl, who I love to see smile. The Coleman family has become our close friends and confidants. Jeremy has known Justice’s dad, Jason, since his grade school days, they grew up at the same church and have been working together for many years. Before we had Brayden, the Colemans moved out to Waterford, just a few miles from our house. We had no idea that their move would be such a huge blessing to us! The Colemans daughter has several brain abnormalities and handicaps; some that are similar to Brayden’s.
Shortly after having Brayden we were on the phone with the Colemans trying to make sense of everything going on. Since their daughter is older than Brayden, our questions were not new to them. They helped us understand all the medical terms, what doctors to find and questions to ask. Over the past year we have come to appreciate their friendship more and more. I feel like they are our guinea pig. The Colemans spend many hours figuring out doctors, therapy, medical equipment and now school. We come along behind and ask them questions about what they have already been through and we have been using their experiences to understand what could be helpful for Brayden.
Our families have an understanding of circumstances. If we say to them Brayden had a bad day, they understand; it is not a typical grouchy kid day, there is much more to it. Sharing questions that we have, thoughts, feelings and concerns for our handicap children. There is no need for explanation. Many of our days are overwhelming and difficult to explain even to our family, the Colemans understand. I call Cara, Justice’s mom, several times week with many random questions (I even called her on their vacation, yikes!) or even just to get together. There is a entirely different level of concern and sometimes hurt when trying to get through the day with your handicap child. At the same time, small celebrations are even bigger, like smiles. The Colemans understand. This kind of friendship is priceless and one that I could not do without.
Brayden and Justice share many of the same therapists. One therapist jokingly said maybe you better check your husbands’ history; they grew up together, work together and both have children with brain abnormalities. I never really thought of it like that. I see it differently. It amazes me to think that years ago, before we knew we would have children, and the Lord always knew that we would have Brayden, the Colemans would have Justice; we would end up living very close and being close friends. Coincidence, I think not, quite a divine plan.
I do not want to forget to mention that they have a son that is four years old, Gibraltar. He has become Carter and Luke’s BFF. When they greet each other, it is in a loud scream and then they are off running. I would have a picture of them but all turned out blurry because they kept moving. I could only get a picture of the children who were sitting still, Brayden and Justice in their hot wheels. His and Her set of wheels, the KidKarts. I think they sit there and think "What are these crazy people doing?".
Have you ever had some one placed in your life that until many years later, you did not realize why? Possibly a best friend or confidant?
Brayden has his own BFF, Justice. Justice Coleman is a sweet two year old girl, who I love to see smile. The Coleman family has become our close friends and confidants. Jeremy has known Justice’s dad, Jason, since his grade school days, they grew up at the same church and have been working together for many years. Before we had Brayden, the Colemans moved out to Waterford, just a few miles from our house. We had no idea that their move would be such a huge blessing to us! The Colemans daughter has several brain abnormalities and handicaps; some that are similar to Brayden’s.
Shortly after having Brayden we were on the phone with the Colemans trying to make sense of everything going on. Since their daughter is older than Brayden, our questions were not new to them. They helped us understand all the medical terms, what doctors to find and questions to ask. Over the past year we have come to appreciate their friendship more and more. I feel like they are our guinea pig. The Colemans spend many hours figuring out doctors, therapy, medical equipment and now school. We come along behind and ask them questions about what they have already been through and we have been using their experiences to understand what could be helpful for Brayden.
Our families have an understanding of circumstances. If we say to them Brayden had a bad day, they understand; it is not a typical grouchy kid day, there is much more to it. Sharing questions that we have, thoughts, feelings and concerns for our handicap children. There is no need for explanation. Many of our days are overwhelming and difficult to explain even to our family, the Colemans understand. I call Cara, Justice’s mom, several times week with many random questions (I even called her on their vacation, yikes!) or even just to get together. There is a entirely different level of concern and sometimes hurt when trying to get through the day with your handicap child. At the same time, small celebrations are even bigger, like smiles. The Colemans understand. This kind of friendship is priceless and one that I could not do without.
Brayden and Justice share many of the same therapists. One therapist jokingly said maybe you better check your husbands’ history; they grew up together, work together and both have children with brain abnormalities. I never really thought of it like that. I see it differently. It amazes me to think that years ago, before we knew we would have children, and the Lord always knew that we would have Brayden, the Colemans would have Justice; we would end up living very close and being close friends. Coincidence, I think not, quite a divine plan.
I do not want to forget to mention that they have a son that is four years old, Gibraltar. He has become Carter and Luke’s BFF. When they greet each other, it is in a loud scream and then they are off running. I would have a picture of them but all turned out blurry because they kept moving. I could only get a picture of the children who were sitting still, Brayden and Justice in their hot wheels. His and Her set of wheels, the KidKarts. I think they sit there and think "What are these crazy people doing?".
Subscribe to:
Posts (Atom)