I'm sorry I don't have any pictures to post of what happened this weekend, but it was truly wonderful. Bill and I took Sam on the longest hike of his life - five miles through very diverse terrain. We started in the swamp, went through forest, hiked through huge rocks, next to a river we could have gone swimming in (it was too cool though) and finally ended up in a cow pasture - all up and down a mountain.
Sam loved walking all over the hardened cow pies. He kept saying, "cow pooty!" over and over. He really had us laughing. It took us almost three hours to hike the five miles, so it wasn't too bad. I was a little unprepared, food-wise, but we managed. I guess I didn't realize it would take so long. I'll be prepared for the next trip though. I'll also make sure to bring my camera.
That evening we had our new pastor and his wife over for a meal. They have a lot to teach us about mountain living. They're both from Western North Carolina, so they're "indigenous" to this region. We really are loving getting to know them and our new church.
On Sunday, after church, we went over to some new friend's house for lunch. They have a daughter about Sam's age. Sam didn't play with her as much as he played with her older sister though. We had a fantastic time and ate some really delicious food. It's wonderful getting to know so many new people.
Yesterday morning, Sam, Trish, Elijah and I went down to the Greenway to meet some other new friends. All of us have kids within six months of each other. It's the perfect playgroup. I think it'll be exciting when they're all in one home over the winter, playing and learning together. They took over the playground, after our walk on the Greenway. We looked like a parade coming down the street - four strollers and two bicycles!
Tuesday, September 09, 2008
Friday, September 05, 2008
Sam's Identity
I am having a bittersweet moment right now. This morning, Sam played with a little girl named Melia (pronounced Ma-Lee-uh). They had a fantastic time together and played really well.
I'll boast about my child for just a second here. You can skip this paragraph if you want. Sam is extremely generous. I am positive it's not because of anything Bill or I have done with him, but he always wants to share his toys and will almost always immediately give a toy to another child if I ask him to. I have to be careful about this though, because sometimes he just needs to hold on to it and play with it for himself, instead of always giving everything away. He really loves being with other children. Older, younger, it doesn't matter. He likes showing off his toys, as every child does, and pulls out toys he's not even interested in when new folks arrive.
Well, our playdate with Melia went really well this morning. She's about six months older than Sam and about two inches taller. She's a beautiful toe-headed little girl, who's curious and articulate and fun to interact with (for me and Sam). She also liked the omelet I made, so I was sold.
Melia is a heart baby too. That's where the title of this post, "Sam's Identity" comes into play. Sam has shown off his belly to anyone we ask him to and to a few we haven't asked him to. This morning, I asked him to show his belly to Melia and her face lit up. She has a "zipper" too. She showed hers to Sam and he glanced at first, then realized something was different. He inspected her belly and then ran his finger along her scar, ending at her JP tube scar. His finger felt it and he said, "ohhhh." Unfortunately, Sam was in a onsie, so I decided to undo it to give him a little more flexibility in sharing his own scar.
He lifted up his shirt, looked at his belly then at Melia. He said, "zipper too" as he lifted her shirt up again.
What a moment. My eyes are filled with tears right now.
Sam really has a heart buddy. Someone who shares the same perfect whitening of her skin as he has, in a long line down her chest. My mind jumped to years from now as they will always have this scar to share between them, and they will each know the unfortunate difficulties that come with it. He's not alone. Neither are we, as the parents.
What a blessing, but how sad. Sam just realized that he's got something that many of us don't. He's got a zipper. But, fortunately for us, Melia has a zipper too. And they found each other.
I'll boast about my child for just a second here. You can skip this paragraph if you want. Sam is extremely generous. I am positive it's not because of anything Bill or I have done with him, but he always wants to share his toys and will almost always immediately give a toy to another child if I ask him to. I have to be careful about this though, because sometimes he just needs to hold on to it and play with it for himself, instead of always giving everything away. He really loves being with other children. Older, younger, it doesn't matter. He likes showing off his toys, as every child does, and pulls out toys he's not even interested in when new folks arrive.
Well, our playdate with Melia went really well this morning. She's about six months older than Sam and about two inches taller. She's a beautiful toe-headed little girl, who's curious and articulate and fun to interact with (for me and Sam). She also liked the omelet I made, so I was sold.
Melia is a heart baby too. That's where the title of this post, "Sam's Identity" comes into play. Sam has shown off his belly to anyone we ask him to and to a few we haven't asked him to. This morning, I asked him to show his belly to Melia and her face lit up. She has a "zipper" too. She showed hers to Sam and he glanced at first, then realized something was different. He inspected her belly and then ran his finger along her scar, ending at her JP tube scar. His finger felt it and he said, "ohhhh." Unfortunately, Sam was in a onsie, so I decided to undo it to give him a little more flexibility in sharing his own scar.
He lifted up his shirt, looked at his belly then at Melia. He said, "zipper too" as he lifted her shirt up again.
What a moment. My eyes are filled with tears right now.
Sam really has a heart buddy. Someone who shares the same perfect whitening of her skin as he has, in a long line down her chest. My mind jumped to years from now as they will always have this scar to share between them, and they will each know the unfortunate difficulties that come with it. He's not alone. Neither are we, as the parents.
What a blessing, but how sad. Sam just realized that he's got something that many of us don't. He's got a zipper. But, fortunately for us, Melia has a zipper too. And they found each other.
Wednesday, September 03, 2008
Out and About with 奶奶
I believe that my last post finishes our story for now. I don't intend to revisit it any time soon, as it took a lot out of me emotionally to write it. I hope you enjoyed reading it, or at least got something out of it (since I'm sure some of you wept through most of it) that will be meaningful in your own lives. I'm done.
On another note...
Bill's mother came up from Columbia, SC for Labor Day weekend. We had a great time and took her all over the High Country.
Sam calls her 奶奶, which is pronounced "Nai Nai." It means paternal grandmother in Mandarin. I love hearing him say it.
We went down to the river to play one of the days she was here. We met Elijah and his mommy and daddy (Trish and Brian) down in Todd and spent the afternoon with them. Sam had a blast picking up river rocks and throwing them back into the river with Elijah. Brian would find the biggest ones he thought Sam and Elijah could hold and hand them over.
Apparently I had something important to say. Elijah looks very intent on hearing me. Brian seems to be investigating these larvae that he kept finding on the rocks to some sort of flying insect that lives on the river. I think they were too small for the boys to see them though.
Picking out just the right rocks.
I'm not positive, but it sort of looks like they're going to throw the rocks at the dogs. That never happened. There were lots of folks out with the dogs, tubes and canoes having fun.
"Kabloosh!"
Everyone's got a rock to show someone else, including Nai Nai.
Three generations on a log.
We also had a chance to go trout fishing again. We caught four for our dinner and re-created the last experience we had with my parents and cousins. Bill smoked them with our own apple wood and I put some sea salt, fresh basil leaves, lemon juice and olive oil on them. They were very tasty.
Here we are fishing.
Nai Nai caught a fish, so Sam needed to help get it in the net.
We actually started the day at the Farmer's Market and went from there to Daniel Boone Gardens. Here Sam is at the wishing well with his Nai Nai - throwing rocks, of course!
We also saw some flowers at the garden.
On Labor Day morning, we found these doves roosting in our driveway. They don't seem to be afraid of us. Sam got really close, but he was too timid to reach out and touch it.
Monday, September 01, 2008
Wrapping the Story Up
I have had a hard time finishing this story, because it is such an ongoing struggle in our lives. But, I wanted to give you a different perspective on what happened while all of the medical issues were going on.
So, here goes.
Bill, Sam and I came back to America on April 1, 2006. We had lived overseas for a total of seven years and Sam was born in Hong Kong on October 2, 2006. I had a very difficult pregnancy, due to an intra-uterine infection and we thought I might have to deliver him in East Asia (yet another story for another day!). God saw fit to keep Sam inside of me until it was just about his due date, after three months on bed rest.
We came back to the States to do public relations for our company for about nine months. The plan was to go back to East Asia in January 2007. We left everything set up for our return - our apartment and items were all waiting for us. Sam was only six months old when we came home and had never been sick a day in his life. Everything was progressing towards us returning overseas until his medical issues struck.
When Sam had his ICD implanted, we spoke at length with his cardiologist and the Medtronics representative about returning to East Asia. The Medtronics rep in Chapel Hill spoke with the Medtronics rep in East Asia as well, and he learned that there are many Medtronics reps throughout East Asiawho would be equipped to handle Sam's ICD. However, the biggest problem would be in finding a pediatric cardiologist who specialized in rhythm. At the time of Sam's surgery, we knew we wouldn't be able to return to Kunming, but that we would have to live in a larger city. We never felt the Lord close the door on us returning, but we saw it getting narrower. We delayed our return to East Asia until March 2007, so Sam could heal and we could monitor him for a time.
We were okay with this decision, if not a little concerned about Sam's future overseas. I remember having long conversations with Bill about returning overseas and wondering if it would really happen. One night, while laying in bed, I told Bill that I thought Sam's defibrillator was going to fire before we returned. Dr. Buck had told us it was likely it would never fire, but instead be a "safety net" in case something happened down-the-road.
I really struggled with returning too. My heart wanted to be there, but Sam's situation made me unsettled. Bill was still the head of our home and he was still carefully moving forward, so I stood beside him in the decision. We were both wondering how the logistics of taking Sam overseas would be.
Then one night, within a week of our conversation, Sam got a fever. It was a high one, and when we went in to wake him up for his medication, it raised to about 103F. We gave him his Motrin dose and I took him to my bedroom to feed him. That's when he started retching. I ran to the bathroom so it would be easier to clean up and, there by the dim light of a nightlight, I saw his entire body jolt from his heart outwards. I screamed to Bill that his defib had fired and we needed to call 911. Sam was screaming bloody murder by then.
That was the first time it had shocked him since we returned home from it being implanted. We were hospitalized for about a week, until they could get his fever down. I believe it may have shocked him again in the hospital, but my memory is fuzzy. You can check out in our blog archives somewhere in the late November to December months.
Dr. Buck was still encouraging us to move forward with going back overseas. He was tentative, but felt confident that this was an isolated event and we would be okay. Then Sam fell ill again and had another high fever. This time, his defib shocked him multiple times. We had to call 911 again and spent another week in the hospital.
We were still moving forward with our intent to return to East Asia, mostly because we didn't have any road-blocks in our way, but also because we didn't really feel that God really wanted us to stay in the States yet. I wonder on this side of it if it was because He wanted us to come to a point where we would totally trust Him with our son's life. I can remember begging Him not to take Sam and really understanding more about His sacrifice of His only Son. Those were hard nights of weeping and begging and understanding and reading His Word and weeping some more. Bill and I were without words on many of those nights, but we both understood each other's feelings.
We pressed on.
Then, I was cooking lunch for our neighbors in the kitchen and Sam had just gotten up from a nap. He was walking towards the kitchen and Bill was behind him when he fell down on his bottom. He started crying and I, of course, jumped from my position at the sink and asked Bill frantically if everything was alright. Bill was calm and said he thought so, picked Sam up and placed him back on his feet. He started to take another step when he was visibly shocked by his defib. Bill told me to call 911 and I was hysterical again. I called 911 and Sam was shocked multiple times in our home - his fever having risen to over 102F. Obviously, by now we realized the pattern was that every time he has a fever over 102F, his heart goes into an arrhythmia and his defib must shock him out of it. Sometimes after his heart is "reset" by the jolt of electricity, his heart starts beating fast again (I'm talking over 300 beats per minute) and it must shock him again. We also learned that Sam fell on his bottom because his heart was going into an arrhythmia, but it healed itself. He must have gotten light-headed when it started beating so quickly. The ICD was charging, but aborted before it shocked him.
Our friend David was one of the firemen on call that day. I didn't even recognize him in my haze of fear for my son. But, I had learned by that point not to be hysterical when they arrived, or they would remove me from the situation and I didn't want that. So, I was going through the motions as best I could.
We had to tell the EMTs the situation over and over because it is so unusual for a child of one year to have a defibrillator. During that ride to the hospital, I recall the EMT calling the hospital to tell them we were coming. I heard the woman respond and say, "Sorry? Did you say you have a one year-old with a defibrillator? That's not right, is it?" It was at that point that I had flash-forwards of hearing the conversation in Chinese and it not making sense to anybody. We were all speaking English that day, but people didn't understand. I couldn't imagine doing it in Chinese and it being any better.
When Dr. Buck arrived at the hospital, one of the first things we talked about, after Sam was stabilized, was returning overseas. His face looked grave as he told us he didn't believe we should return with Sam for at least another year. It was obvious that Sam was prone to fevers when he got sick, even without symptoms, and we couldn't risk it.
We were crushed, but I think we both knew this was going to happen. Our lives, ever since we'd been married, were overseas. Our work was overseas. Our friends were overseas. Our home was overseas. You name it...
We immediately started talking about what kind of job we would need to get. What were we qualified for? Where would we live? How would we be able to afford a whole new home - new furnishings, clothes, blankets, kitchen supplies, everything? We hadn't even brought enough clothes back to the States with us. The logistics overwhelmed us. My overseas friend's faces were brought back to my mind over and over. What were going to do?
We had to take it one day at a time and first announce our leave of absence from our company. Then, put the word out that we needed a job. Our friends in America were so helpful to us. We prayed about where to go and what to do. The biggest priority, of course, was keeping Sam close to a good medical facility. Even in America that's an issue.
Eventually, after a few months of consideration and prayer, Bill took his job with Samaritan's Purse. One of our best friends, who we met overseas, wanted Bill to come work with him and it was the perfect position. Bill is now the Regional Manager for South and East Asia at Operation Christmas Child.
Getting to that point was a hard road. Taking out all of the medical issues and just dealing with making a life-changing decision that would affect our lives in such a huge way was enormous and an impossible load to carry on our own. Bill and I were so stressed out with the situation, there were days that we could barely talk to each other. God has completely healed our hearts now and we are more united than we ever were before we walked this difficult road together. Bill is an amazing man, and I don't envy the load he had to bear in making such large decisions for our family. I believe God has worked so mightily in his life and I have seen him grow into someone I hope my son can emulate: a real child of God.
So, here we are. Still in North Carolina, one of the most beautiful places on earth. A little remote as far as medical facilities are concerned, but close enough. God has given us a wonderful pediatrician here, but there are no pediatric cardiologists, let alone one who specializes in rhythm. We still see Dr. Buck, but Sam and I drive to Greensboro for those meetings now.
We were hospitalized about two weeks after moving here in early April, and ended up down in Charlotte, but God redeemed us from that illness as well.
I fear this winter will be hard for our family. We understand from many doctors that children will have high fevers until they are about three years-old. Sam is approaching his second birthday and we are anticipating many more illnesses this winter. I have to balance my fear of him getting sick with my knowledge that he must interact with other children to be emotionally healthy. It's a struggle sometimes, but I think I'm doing alright.
I want you to walk away from reading this understanding that Sam is extremely important to us. Our choice to go back overseas was soley due to our prayerful discoveries with the Lord and wise counsel from doctors.
As I have said before, God was in control of this situation.
Our "stuff" in East Asia, our friends, our lives that were there will wait. We have tried to be obedient in our Walk and do what is best for our whole family. It is better to live in obedience than disobedience, Bill always says. Boy is he right.
God is good.
Next drama: the adoption of our little girl. When will she get here??? I guess we'll learn more about that story as it unfolds right before our eyes.
And as for our "belongings?" Well, my parents moved overseas for a few years and have graciously allowed us to borrow everything of theirs. My sister-in-law gave me some of her winter clothes and we have been able to collect the rest from precious folks who love us. Bill is heading back to East Asia soon and will pick up a few things like our photos and other items, so we won't have to buy everything anew. So you see, it worked out perfectly. We didn't need to spend our time worrying about logistics after all.
So, here goes.
Bill, Sam and I came back to America on April 1, 2006. We had lived overseas for a total of seven years and Sam was born in Hong Kong on October 2, 2006. I had a very difficult pregnancy, due to an intra-uterine infection and we thought I might have to deliver him in East Asia (yet another story for another day!). God saw fit to keep Sam inside of me until it was just about his due date, after three months on bed rest.
We came back to the States to do public relations for our company for about nine months. The plan was to go back to East Asia in January 2007. We left everything set up for our return - our apartment and items were all waiting for us. Sam was only six months old when we came home and had never been sick a day in his life. Everything was progressing towards us returning overseas until his medical issues struck.
When Sam had his ICD implanted, we spoke at length with his cardiologist and the Medtronics representative about returning to East Asia. The Medtronics rep in Chapel Hill spoke with the Medtronics rep in East Asia as well, and he learned that there are many Medtronics reps throughout East Asiawho would be equipped to handle Sam's ICD. However, the biggest problem would be in finding a pediatric cardiologist who specialized in rhythm. At the time of Sam's surgery, we knew we wouldn't be able to return to Kunming, but that we would have to live in a larger city. We never felt the Lord close the door on us returning, but we saw it getting narrower. We delayed our return to East Asia until March 2007, so Sam could heal and we could monitor him for a time.
We were okay with this decision, if not a little concerned about Sam's future overseas. I remember having long conversations with Bill about returning overseas and wondering if it would really happen. One night, while laying in bed, I told Bill that I thought Sam's defibrillator was going to fire before we returned. Dr. Buck had told us it was likely it would never fire, but instead be a "safety net" in case something happened down-the-road.
I really struggled with returning too. My heart wanted to be there, but Sam's situation made me unsettled. Bill was still the head of our home and he was still carefully moving forward, so I stood beside him in the decision. We were both wondering how the logistics of taking Sam overseas would be.
Then one night, within a week of our conversation, Sam got a fever. It was a high one, and when we went in to wake him up for his medication, it raised to about 103F. We gave him his Motrin dose and I took him to my bedroom to feed him. That's when he started retching. I ran to the bathroom so it would be easier to clean up and, there by the dim light of a nightlight, I saw his entire body jolt from his heart outwards. I screamed to Bill that his defib had fired and we needed to call 911. Sam was screaming bloody murder by then.
That was the first time it had shocked him since we returned home from it being implanted. We were hospitalized for about a week, until they could get his fever down. I believe it may have shocked him again in the hospital, but my memory is fuzzy. You can check out in our blog archives somewhere in the late November to December months.
Dr. Buck was still encouraging us to move forward with going back overseas. He was tentative, but felt confident that this was an isolated event and we would be okay. Then Sam fell ill again and had another high fever. This time, his defib shocked him multiple times. We had to call 911 again and spent another week in the hospital.
We were still moving forward with our intent to return to East Asia, mostly because we didn't have any road-blocks in our way, but also because we didn't really feel that God really wanted us to stay in the States yet. I wonder on this side of it if it was because He wanted us to come to a point where we would totally trust Him with our son's life. I can remember begging Him not to take Sam and really understanding more about His sacrifice of His only Son. Those were hard nights of weeping and begging and understanding and reading His Word and weeping some more. Bill and I were without words on many of those nights, but we both understood each other's feelings.
We pressed on.
Then, I was cooking lunch for our neighbors in the kitchen and Sam had just gotten up from a nap. He was walking towards the kitchen and Bill was behind him when he fell down on his bottom. He started crying and I, of course, jumped from my position at the sink and asked Bill frantically if everything was alright. Bill was calm and said he thought so, picked Sam up and placed him back on his feet. He started to take another step when he was visibly shocked by his defib. Bill told me to call 911 and I was hysterical again. I called 911 and Sam was shocked multiple times in our home - his fever having risen to over 102F. Obviously, by now we realized the pattern was that every time he has a fever over 102F, his heart goes into an arrhythmia and his defib must shock him out of it. Sometimes after his heart is "reset" by the jolt of electricity, his heart starts beating fast again (I'm talking over 300 beats per minute) and it must shock him again. We also learned that Sam fell on his bottom because his heart was going into an arrhythmia, but it healed itself. He must have gotten light-headed when it started beating so quickly. The ICD was charging, but aborted before it shocked him.
Our friend David was one of the firemen on call that day. I didn't even recognize him in my haze of fear for my son. But, I had learned by that point not to be hysterical when they arrived, or they would remove me from the situation and I didn't want that. So, I was going through the motions as best I could.
We had to tell the EMTs the situation over and over because it is so unusual for a child of one year to have a defibrillator. During that ride to the hospital, I recall the EMT calling the hospital to tell them we were coming. I heard the woman respond and say, "Sorry? Did you say you have a one year-old with a defibrillator? That's not right, is it?" It was at that point that I had flash-forwards of hearing the conversation in Chinese and it not making sense to anybody. We were all speaking English that day, but people didn't understand. I couldn't imagine doing it in Chinese and it being any better.
When Dr. Buck arrived at the hospital, one of the first things we talked about, after Sam was stabilized, was returning overseas. His face looked grave as he told us he didn't believe we should return with Sam for at least another year. It was obvious that Sam was prone to fevers when he got sick, even without symptoms, and we couldn't risk it.
We were crushed, but I think we both knew this was going to happen. Our lives, ever since we'd been married, were overseas. Our work was overseas. Our friends were overseas. Our home was overseas. You name it...
We immediately started talking about what kind of job we would need to get. What were we qualified for? Where would we live? How would we be able to afford a whole new home - new furnishings, clothes, blankets, kitchen supplies, everything? We hadn't even brought enough clothes back to the States with us. The logistics overwhelmed us. My overseas friend's faces were brought back to my mind over and over. What were going to do?
We had to take it one day at a time and first announce our leave of absence from our company. Then, put the word out that we needed a job. Our friends in America were so helpful to us. We prayed about where to go and what to do. The biggest priority, of course, was keeping Sam close to a good medical facility. Even in America that's an issue.
Eventually, after a few months of consideration and prayer, Bill took his job with Samaritan's Purse. One of our best friends, who we met overseas, wanted Bill to come work with him and it was the perfect position. Bill is now the Regional Manager for South and East Asia at Operation Christmas Child.
Getting to that point was a hard road. Taking out all of the medical issues and just dealing with making a life-changing decision that would affect our lives in such a huge way was enormous and an impossible load to carry on our own. Bill and I were so stressed out with the situation, there were days that we could barely talk to each other. God has completely healed our hearts now and we are more united than we ever were before we walked this difficult road together. Bill is an amazing man, and I don't envy the load he had to bear in making such large decisions for our family. I believe God has worked so mightily in his life and I have seen him grow into someone I hope my son can emulate: a real child of God.
So, here we are. Still in North Carolina, one of the most beautiful places on earth. A little remote as far as medical facilities are concerned, but close enough. God has given us a wonderful pediatrician here, but there are no pediatric cardiologists, let alone one who specializes in rhythm. We still see Dr. Buck, but Sam and I drive to Greensboro for those meetings now.
We were hospitalized about two weeks after moving here in early April, and ended up down in Charlotte, but God redeemed us from that illness as well.
I fear this winter will be hard for our family. We understand from many doctors that children will have high fevers until they are about three years-old. Sam is approaching his second birthday and we are anticipating many more illnesses this winter. I have to balance my fear of him getting sick with my knowledge that he must interact with other children to be emotionally healthy. It's a struggle sometimes, but I think I'm doing alright.
I want you to walk away from reading this understanding that Sam is extremely important to us. Our choice to go back overseas was soley due to our prayerful discoveries with the Lord and wise counsel from doctors.
As I have said before, God was in control of this situation.
Our "stuff" in East Asia, our friends, our lives that were there will wait. We have tried to be obedient in our Walk and do what is best for our whole family. It is better to live in obedience than disobedience, Bill always says. Boy is he right.
God is good.
Next drama: the adoption of our little girl. When will she get here??? I guess we'll learn more about that story as it unfolds right before our eyes.
And as for our "belongings?" Well, my parents moved overseas for a few years and have graciously allowed us to borrow everything of theirs. My sister-in-law gave me some of her winter clothes and we have been able to collect the rest from precious folks who love us. Bill is heading back to East Asia soon and will pick up a few things like our photos and other items, so we won't have to buy everything anew. So you see, it worked out perfectly. We didn't need to spend our time worrying about logistics after all.
Thursday, August 28, 2008
Babyfit.com
I think I have mentioned before that I belong to an online group called babyfit.com. Apparently there was a story on the Today show this morning about it - an amazing situation. I just want to say again how much I love my girls from babyfit. I've enjoyed getting to know each of them and am grateful for all the support they have shown our family and Sam, in particular.
Here's the link. And the cool part is that the woman whose baby was saved is from Riverview, Florida - where Bill grew up!
Here's the link. And the cool part is that the woman whose baby was saved is from Riverview, Florida - where Bill grew up!
Wednesday, August 27, 2008
Relief
I think I've put you through enough stress this week in my recounting of our story. You guys need a break!
I thought I'd give you a little glimpse of Sam saying the alphabet at his snacktime today. The bandana on his head was his idea.
See? He's pretty normal, depsite his past and present struggles.
I thought I'd give you a little glimpse of Sam saying the alphabet at his snacktime today. The bandana on his head was his idea.
See? He's pretty normal, depsite his past and present struggles.
Tuesday, August 26, 2008
Are You Ready?
Get yourself a cup of coffee, a box of tissues and settle in. I'm about to tell you what happened next...
Within hours of the surgery, he had his first bowel movement. You may think it's odd that I post this, but that is a huge fete for anyone, let alone a small child. It normally takes days after a surgery. Within 24 hours, he had his second.
As we were approaching Sam's hospital room, we saw them wheeling him in on a gurney. He was so tiny compared to the enormous bed. He was coming out of his drug-induced sleep and immediately recognized me. I walked as quickly as I could to him, my head pounding with every step.
They hooked him up to the heart monitor in the room and carefully moved him to his bed. That's when it happened. We were barely in the room.
Bam - he was obviously shocked by his new defibrillator, his body went rigid for a second. He immediately began crying this deep, hoarse, gut-wrenching cry. We didn't know what was happening. One of the nurses said it was because he had gotten too excited and his heart was beating too quickly.
Take yourself out of the picture for a moment - even I had the brains to understand that if they had set the settings so low he couldn't even get excited, we were in for a lot of hard days ahead. That would mean that if he cried, even for a couple minutes, he would get shocked. Really?? What moronic doctor would be okay with that? Certainly not Dr. Buck.
Back in the room, Sam is hysterical and we were upset too. All I could do was to lean my head over his body so he could wrap his hands and arms in my hair for security. I heard a nurse distantly say that I might feel a shock too. Bam, another shock, only Sam felt it. Sam started screaming harder now. Bam, another one. Bam. Bam. Bam. Bam.
One of the nurses told Bill this was "nothing to freak out over." I believe his exact words to her were, "I beg to differ with you, this is EXACTLY something to freak out over." Bill was demanding our doctor over and over. I had a brief moment to look up from the death grip Sam had on my neck and saw my mother-in-law and my twin brother standing with white faces, completely helpless, on the other side of the glass. I remember my sister-in-law's parents running down the hall to the room. Bam, hit again. Sam was screaming in my ear. Bam. Bam.
The heart monitor showed his heart rate at 125 beats per minute. I knew from what Dr. Buck told me that his defibrillator was set to go off at 230 beats. Why was it constantly shocking him?
Here is my 11 month-old son, completely helpless, his chest recently cut open, bandages all over him, and he is screaming and aching all over - because of me. That was all I could think. He lived a happy life before this moment. Maybe the defibrillator was the wrong choice. Maybe he would have been better off without it. Why did I do this to him? Did we hear the Lord wrong when we prayed about it and decided, so quickly, to implant a defibrillator in his tiny body?
Twenty four minutes passed. He was shocked 22 times. Twenty two. Did you read that? Twenty two. He barely weighed 18 pounds. My eleven month-old child was struck twenty two times with electricity directly to his tiny heart.
Dr. Buck came running into the room with something that looked like a hard-shelled briefcase. Little did we know that that briefcase would become an extremely familiar part of our lives.
He opened it up and it was more like a laptop. It had a computer mouse-looking object with a cord attaching it to the machine. He held it over Sam's belly, where the defibrillator had been implanted, and turned the device off. The device can be completely controlled by this computer, without having to go back into his body. I was relieved. The adrenaline started to wear off and my head was pounding. I was shaking all over and could barely stand up. I collapsed on the couch behind me and Bill took over comforting Sam.
I'm sure Bill felt mixed emotions during this time. He wasn't the one hugging Sam while he was being shocked, I was. It was my choice and I don't think any mother reading this would have made a different decision. But, I physically wouldn't let Bill get near him, because I needed to be the one to hold him and comfort him. There were moments that I would reach my hand out and we would hold hands. But, something inside of me took over - some sort of innate mothering instinct. Bill could only be the logical one, the one to demand a doctor, the one to lay his hand on my back, the stable one. It killed him that he couldn't hold Sam because I wouldn't let him. I wouldn't let anyone. It took a toll on us and we argued about it a lot in the days after.
It is extremely important to talk through these things with your spouse before a trying time occurs. There needs to be a game plan, a method to your madness. So that no matter how difficult the situation, you present a united front. We know that now.
Sam somehow fell asleep. He was on so much morphine, they told us he'd never remember what happened. That didn't help us sleep better though. Dr. Buck told us he'd been shocked 22 times in 24 minutes. After hours of sifting through the strips and trying to figure out what happened, we still had no answers.
I looked Dr. Buck in the eyes and asked him if we had made a mistake. I can still remember the look of surprise he had on his face. He said in all certainty that Sam would die without it. That was enough for me.
He left the monitoring part of the device on, but turned the "therapy" part off. It wouldn't shock him again. He gave us a blue, three inch-in-diameter, magnetic doughnut. He left two with the nurses as well. If something happened, we were instructed to hold the doughnut over Sam's belly and it would suspend the therapies. But, Dr. Buck said, nothing would happen because he turned the therapy side off.
Meanwhile, the infectious disease doctor of UNC hospitals got wind that I had viral meningitis and was in the pediatric step-down unit of the hospital. We were told I might be asked to leave. I was about to open my mouth and say something I'd regret, when Bill said we'd cooperate fully with the hospital. When I told the doctor, via the telephone, that my ID doctor at Rex said I wasn't contagious and which is why he released me, she said she knew him and completely trusted his opinion. She called him and verified my story and I wasn't asked to leave. Praise God. A small victory.
Sam was in and out of consciousness, his small face starting to swell from the surgery on his tiny body. I was told I could nurse him as soon as he wanted, and at first, I sat in a chair and pulled him down with me. Eventually, I learned that I could crawl up into his crib and lay down to nurse him. I slept there with him for most of the days following, keeping him as physically close to me as I could.
Within hours of the surgery, he had his first bowel movement. You may think it's odd that I post this, but that is a huge fete for anyone, let alone a small child. It normally takes days after a surgery. Within 24 hours, he had his second. 
Keep in mind, again, that he has an adult-sized defibrillator in him. Adults get them implanted in their upper right or left chest, next to the shoulder. Sam didn't have any space in his body that would contain a hockey-sized device, and therefore it went into his belly. They had to move intestines to get it to fit. This is yet another reason why him having bowel movements was a huge event.
Twenty four hours after the surgery, he was sitting up. Forty eight hours later, he was pulling himself up using the crib bars. Within three days, he was using the crib bars to walk - something he had never done before in his life. One of the doctors making rounds said in his 30-plus years of being a doctor, he had never seen anyone recover so quickly. I know that nursing him helped. That combined with many many prayers and Sam didn't stand a chance - he was going to recover quickly.
Every day we would get a visit or two from Dr. Buck and Dr. Stewart. Dr. Buck had sent Sam's ECG strips to the Medtronics home plant in Minnesota. Every available worker was sifting through algorithms trying to decipher what went wrong.
Dr. Buck was extremely protective of our family. If the cafeteria forgot to bring us food, he would call them or tell the nurses on our behalf. He wanted us to leave the room and get brief breaks from our stressful situation.
After a couple days we learned his device had been double-counting his heartbeats. When it was really 125 beats per minute, the defib read 250bpm. It's not meant for an infant's body and just isn't equipped to handle the odd electricity that Sam's heart was producing, especially after surgery. We monitored how many more times it would have shocked him, had the therapy side been turned on, and it was at least 12 more times.
After several days, his body began to heal and the defib began to settle in to normal functions. After about five days, Dr. Buck said he wanted to turn it back on, to see what would happen. I said no. Bill agreed. We waited for another 24 hours. Then the day arrived - we turned the therapy side back on.
Nothing happened. We had the "magic" doughnut with us at all times. We were allowed to take Sam on little wagon rides around the floor - but always carried our magic doughnut. Adam and Kendall took Sam for a spin without us one time. It was about 10 minutes, but it was agony to be away from him. At the same time, it was the greatest relief I had had in two weeks.
Nothing happened.
The day finally came that we were released from the hospital. I was fifteen pounds lighter (at 114lbs), Bill was beaten down, but Sam's face wasn't as swollen. I was so scared. Bill was scared too. We both trust the Lord to carry us through this situation. In fact, I haven't mentioned how much prayer went into this time, but every single minute of every single day someone was praying for him. For us.
If you've been reading our blog for a while, you know the verses that we found most comforting come from Isaiah 43. "As you pass through the water, I will be with you. And the winds and the waves will not overcome you. Do not fear, for I have redeemed you. I have called you by name and you are Mine." We sang this song to Sam every day all day. We found solace in Him - comforted by the fact that He is the One who knitted Sam in my womb and created him with this heart condition. He, alone, knows the future - and how can we not trust Him, if He is the Author and Perfector of our faith?
I honestly don't know how people make it through these sorts of situations without the Lord. It has to be that much harder.
Our instructions were these: take him home, tend to his wound, carry the doughnut with him at all times, treat him normally, if his defib shocks him, call 911. That was it. No instruction manual or anything.
I know there are at least two mothers reading this who have children with heart conditions, one with a pacemaker, one soon to have a pacemaker. You two understand our situation better than anyone else. I find comfort in that. We are not alone.
We found out later that over 1000 people were praying for Sam, around the world. Wow.
In recounting this story, I haven't cried once...until today. In the past, every time I have sat down to write it down, I couldn't because I was crying too hard. Just a few weeks ago my mother asked me to tell her what really happened - what did Sam look like when he was having the seizure? what was it like in the hospital?, etc - I couldn't tell her.
I believe that I have reached a point now, though it is still tender, that I can see how beneficial it is for me to tell this story. Planting those irises on Friday has really affected me. As I told you before, they sat in a plastic bucket and had no nourishment, yet God allowed them to grow and even bloom. We spent the winter wondering what God had in store for our future, reading our Bibles daily and talking to wise counsel. We had nourishment from Him and we have bloomed where we've been planted. Though it was a hard winter, I'm glad we had the nourishment. If we hadn't, it would have been so much harder, but I'm certain He would have allowed us to bloom even still.
I'll tell you a little more in a couple days, so you can understand the whole picture of what happened. For now, wipe your eyes and find comfort in knowing we are okay. We're a bit rattled and Bill's and my marriage has changed form, but it's all for the better. Sam has been a huge blessing on our lives and we love him dearly. I am so grateful that God, in His wisdom, has chosen to keep him with us for now.
There's one more chapter left in this part of the story, by no means is it the last chapter.
Monday, August 25, 2008
Extra Photos
Before I tell you the next chapter, I thought I'd post some never before seen photos from this time in our lives.
Here we are waiting to be called back to pre-op.
Sam knew something was going on - and he was extremely gentle with me. He likes to play with hair when he's feeling insecure or tired. Also, you'll notice he's using a pacifier - he never took one before this and he never took one after it.
He was so sweet to cuddle gently with me.
Here we all are in a rare moment of me sitting up. The waiting room here was so full there was no room to lay down. Bill held me up with his arm. Sam just held onto my hair and hugged me.
This was a photo Adam said reminded him of our Father's love for us. Sam is so vulnerable and he just wanted to hug his daddy.
I'll tell you what happened after surgery soon...
You Asked For It...
Here is the rest of our saga.
Once Sam was released from the hospital, as I mentioned before, we had 24 hours of having a heart monitor attached to him. It came with a little purse and we carried it around behind him wherever he walked. Here's some video of it that I took from my Motorola back at the hospital (it's low quality and short):
Once Sam was released from the hospital, as I mentioned before, we had 24 hours of having a heart monitor attached to him. It came with a little purse and we carried it around behind him wherever he walked. Here's some video of it that I took from my Motorola back at the hospital (it's low quality and short):
So, you can see, it was a short leash and we had to keep up with him everywhere.
After the 24 hours were up, we removed the heart monitor and mailed it back to the appropriate people. We had set up an appointment with Dr. Buck, a pediatric rhythm cardiology specialist. All we knew was that we were supposed to hear the results from all the ECGs they took at the UNC Hospital during our stay there.
We had a lot of people praying for the situation. We saw Sam's pediatrician and he told us this was probably nothing and that most children have febrile seizures. After working with him over the following six months, we realized that he really tries to downplay the severity of a situation in order to keep us from worrying.
Here's an email I got from Cindy Bush, a friend of ours, who was apparently struck by the Holy Spirit on exactly what I needed to hear:
We understand about waiting on our Lord's perfect plan. Continue to look forward rather than backwards asking "Why". As long as we ask our Lord we will learn what He wants us to know. It also keeps us looking for the answers. We have seen them in so many ways. Waiting leads to disappointment sometimes, but it also leads to knowledge and wisdom. I am so glad you were here when this occurred.
She knew about disappointment, as her husband had been diagnosed with cancer about a year before this, and passed away early this year. She's the only one who told me I might be disappointed. I am really grateful for it.
We left the hospital on a Wednesday. His appointment with Dr. Buck was for that Friday. When I woke up on Thursday morning I had a pounding headache. Nothing I did would relieve this headache. I called my doctor and he said I should take some Alleve and rest some. He thought it might be a migraine. Sitting up hurt. Which meant nursing Sam hurt even more. I had to hold him in my arms and I could barely sit without shaking all over. I kept telling Bill how badly my head hurt, but I'm a big complainer and I don't think he knew I was describing the worst headache I'd ever had. I called the doctor back and he said if it hadn't gotten better by evening, to go to the ER.
By 8pm, Sam was in bed and I was in trouble. I told Bill we had to call my sister-in-law over to watch Sam while we went to the emergency room. You can only imagine how bad my head must have hurt, because I was about to leave a child who had been in such a serious condition with someone who wasn't me.
Bill took me to the ER and I couldn't even stand up. They finally got a wheelchair for me, but I had to lean over in it. When a nurse mentioned meningitis, I was immediately rushed back to see a doctor. This doctor wanted to do a spinal tap on me and said if there were only a few white blood cells, he would send me home with instructions to rest. I absolutely refused any medication, due to nursing, but I knew we needed to get to the bottom of the headache.
They did a CT scan on me and it came up clear. Then they did a spinal tap. I sat up and leaned on Bill's arms with my back arched. I jerked up a bit when the needle went into my back and Bill AND the doctor both were stern with me. It's very important to remain perfectly still for this. Once he started pulling my spinal fluid out, I began to pass out. I think it was a vesovegal response. It took me a while to recover.
Bill and I were talking with each other about how crazy this situation was when the doctor came back into the room. He said he was sorry to say I had full-blown viral meningitis. I wasn't going to leave the hospital for several days AND I was now in quarantine. He finally told me that he wasn't going to allow me to deny medication - I would have to pump (and dump) my milk for several days, but he strongly recommended I take something for the intense pain.
The only room they had for me in the hospital was in the children's wing. I was immediately transferred, with a mask over my face and everyone around me wore masks too. Anyone who came to visit me also had to wear a mask. After a couple days, the infectious disease doctor said this was only a precaution - it is bacterial meningitis that is super contagious.
As soon as Bill left, I called my mother. It was 2am and I was on drugs - big time. I still had a headache too, but was much better when I laid down. My mother couldn't believe what was happening - she had recently moved to Thailand and had no control over the situation. She felt useless. I told her, again, we didn't need her to come home - I couldn't imagine her jet lagging would help us at all.
Every three hours, I would swing my feet to the edge of the bed and sit up to pump. My head would pound and pound, but I had no choice. I was determined to nurse Sam through whatever was going to come - he needed the immunities that only I could give him.
The next afternoon, Bill showed up. He had called his mother to come help and she was already with Adam and Kendall taking care of Sam. Bill had had the appointment with Dr. Buck that morning.
To hear Bill tell the story is very sad. He said he was sitting there with a 10 month-old baby, his wife in the hospital with viral meningitis, when Dr. Buck said, "Your son has a rare heart condition and needs an internal defibrillator implanted as soon as possible. His life could be threatened some time between now and the time it's implanted, so you'll need to have a heart monitor at home too." Bill said he thought Dr. Buck felt sorry for him - knowing what a difficult time this was. But, as always, he was very gentle and extremely encouraging.
Bill came to visit me on Friday afternoon. I had been organizing meals from my hospital bed, doped up on painkillers, but wanting to provide for my family. Bill said it was the most appropriate time to tell me something so horrific - I was completely drugged.
He said, as I recall, that Sam has something called Brugada Syndrome and needs heart surgery immediately. My response was, "alright, let's do it." Nothing else. No crying, no screaming. My head hurt so bad - I couldn't respond.
I wasn't released until Saturday afternoon. Bill carried me to a bed downstairs in our home and brought Sam to me. I had never been away from him before that time and he had been missing me a lot. I gave him a bottle of formula and loved on him.
The doctors told me it would be another several weeks before I would feel better and at least a week before my head would stop hurting. I took medication for only two days, but knew Sam needed my milk in order to recover as best as he could from an operation.
Every night, Bill would hook Sam up to a heart monitor upstairs. And every night, when Sam tossed and turned, the heart monitor would beep like crazy. Bill said his feet hit the ground and he was beside Sam's crib to see if he was dead within a half a second. Everyone was on edge.
Our church really took care of us, especially our Sunday School class. Every meal was provided, including snacks for Sam. The surgery was scheduled for the following Wednesday morning. Tuesday was the orientation at the hospital. I couldn't even stand up on Tuesday and thus, I laid in a dark room all by myself while Bill, his mother and Sam went to the hospital. I cried and cried until there were no tears left. Then I cried some more.
On Wednesday morning, we all caravaned to UNC hospital. I laid my seat back as far as it would go. Bill called his father from the car to tell him what happened. Every family member of ours on both sides needed to get an ECG to check for Brugada Syndrome.
We took Sam back to get him dressed and talk to the pre-op folks. They let Sam have a little toy from the waiting room - an apple that made beautiful music. We still have it sitting on his window sill. He wouldn't let go of it through his whole stay. Dr. Stewart, the surgeon, came in to talk to us. I told him my brain was swollen or something crazy like that. I can only remember him laughing about it days later and don't remember actually saying it. They took Sam back and he gladly went to them.
We waited in the waiting room for hours and hours. It took a lot longer to perform the surgery than they thought. Apparently, they couldn't get a good location for the leads on Sam's heart. Because his heart is so messed up, electrically speaking, all of the connections were too poor. Once they finally had the leads attached, they had to actually send his heart into tachycardia. I didn't realize this part - they actually had to test the integrity of the device. It makes sense now, but I never put two and two together.
Sam's heart is very strong. It wouldn't go into tachycardia. They tried eight times and it was only on the 8th time they finally got a sustained tachycardia and the device shocked him. They tried two more times after that and felt that the system was reliable.
I laid on the floor of the waiting room with my brother, mother-in-law and Bill, eating tuna fish sandwiches that someone from church made. We were all on pins and needles. Dr. Buck and Dr. Stewart came into the waiting room talking and smiling. Dr. Stewart said he had never worked on a heart so little. They were very happy with the results.
We were relieved and they told us where to find our son. We went up to the step-down unit to see him.
Nothing could have prepared us for the horror of what happened next. Absolutely nothing.
Saturday, August 23, 2008
One Year Ago Today
Today is the day. It has officially been one full year since our lives changed.
One year ago this morning, Sam woke up and felt warm to me. I took his temperature and it was 102.5F. I brought him to Bill and told him he had a fever. In my ignorance, I dressed Sam in sweat pants, thinking it would keep him from shivering. (If you are reading this and have an infant or toddler, please don't dress them in any clothes if they have a high fever. Take off all their clothes and keep them cool.) Bill took Sam over to the living room and sat him on his lap to watch some TV. Keep in mind that Sam wasn't even 11 months at this point, so he was very little. He was crawling, but not standing yet.
I'm sure it was the sweat pants, but Sam had a fever spike and he started to have a seizure on Bill's lap. I was in the kitchen when Bill called to me and said, "Sam is having a seizure, call 911." I flipped out. I ran into the room with the phone screaming, "he's having a seizure" the whole time. I dialed 911, but couldn't talk, because I was hysterical.
Bill laid Sam on his side in the sun room of the house and grabbed the phone from me. I proceeded to yell at Sam and tell him not to leave me. His eyes were rolled up in his head and he was moaning, as if he was having a very bad bowel movement. His arms were completely rigid too.
I'll never forget it all. Bill was calmly explaining the situation, but I was so hysterical the responder thought he was too. He finally punched me in my arm and told me to get a hold of myself.
When the EMS got to our home, I was hysterical again, trying to explain what happened. They actually removed me from the situation because of my hysterics. They handed me a piece of paper and asked me to write down everything that happened - and I knew when they did that they were trying to keep me busy, but I did it anyway. One of the gentlemen told me this would probably be only a bad memory and would never happen again.
I rode with Sam, who was completely out of it all the way to the hospital. When we got there, they just told us it was a febrile seizure and to give him meds to keep the temp down. He was still very out of it and slept for a long time.
We went home, ordered pizza, and started calming down a bit. While I was nursing Sam before bed, I could physically feel his temperature increasing and told Bill he was having a fever spike. Right after I said that, Sam vomited and I ran upstairs to get him changed - that's when he started seizing again. We called 911 again.
Sam vomited two or three more times. Our neighbors were home this time and came over to make sure everything was okay. Danny of Six Forks EMS was one of the EMTs on call. They took everything very seriously and this time I didn't freak out in front of them because I didn't want to be separated from him.
While we were in the ambulance, Danny couldn't get a pulse ox on Sam, so he took an ECG instead. That's when he saw he was in VTAC. The lights in the ambulance came on and we got to Rex very quickly. The doctors at Rex didn't believe it was true though - they said they thought it was an artifact, something that occurred because of bumps in the road. Not so.
Our pediatricians office sent the doctor on-call and she came in to talk to us. She saw the ECG strip laying on the bed next to Sam, who by this point had had two or three more VTACs. She said, "you'd better hope that's a mistake," referring to the ECG. I didn't like her bedside manner, but after she saw the ECG, she did everything she could to get us transferred. You see, Rex said they couldn't monitor Sam on a heart monitor.
Wake Med was full. Duke was full. UNC was full. She finally called UNC again and told them exactly what happened and how serious this was. Fortunately for us, Dr. Buck was there that evening and he knew that complex (more than one) febrile seizures are an indication of Brugada Syndrome.
We were transferred to UNC - Sam had to go by himself in the ambulance and Bill and I tried to follow. When I made it to UNC, it was around midnight or one in the morning. We went through all the security checks and when I got up to the Fort that was the heart unit, I heard my baby crying. I wasn't even allowed to nurse him.
We settled in for an undetermined amount of time. My brother came to the hospital too.
They monitored Sam for several days, but because he had enough Tylenol and Motrin in him at this point, he didn't have any more fevers. Therefore, he didn't have any more arrhythmias.
We stayed for about five days at UNC. I can remember the day we left, Dr. Robinson, another cardiologist, came in and told us they were checking Sam for Long QT Syndrome or Brugada Syndrome. We had never heard of either. We left the hospital on Wednesday and had an appointment with Dr. Buck (who we still hadn't seen yet) for the following Friday.
Want to hear more? If you do, I'll share with you what happened next - if you haven't heard the story already, it'll blow your socks off.
One year ago this morning, Sam woke up and felt warm to me. I took his temperature and it was 102.5F. I brought him to Bill and told him he had a fever. In my ignorance, I dressed Sam in sweat pants, thinking it would keep him from shivering. (If you are reading this and have an infant or toddler, please don't dress them in any clothes if they have a high fever. Take off all their clothes and keep them cool.) Bill took Sam over to the living room and sat him on his lap to watch some TV. Keep in mind that Sam wasn't even 11 months at this point, so he was very little. He was crawling, but not standing yet.
I'm sure it was the sweat pants, but Sam had a fever spike and he started to have a seizure on Bill's lap. I was in the kitchen when Bill called to me and said, "Sam is having a seizure, call 911." I flipped out. I ran into the room with the phone screaming, "he's having a seizure" the whole time. I dialed 911, but couldn't talk, because I was hysterical.
Bill laid Sam on his side in the sun room of the house and grabbed the phone from me. I proceeded to yell at Sam and tell him not to leave me. His eyes were rolled up in his head and he was moaning, as if he was having a very bad bowel movement. His arms were completely rigid too.
I'll never forget it all. Bill was calmly explaining the situation, but I was so hysterical the responder thought he was too. He finally punched me in my arm and told me to get a hold of myself.
When the EMS got to our home, I was hysterical again, trying to explain what happened. They actually removed me from the situation because of my hysterics. They handed me a piece of paper and asked me to write down everything that happened - and I knew when they did that they were trying to keep me busy, but I did it anyway. One of the gentlemen told me this would probably be only a bad memory and would never happen again.
I rode with Sam, who was completely out of it all the way to the hospital. When we got there, they just told us it was a febrile seizure and to give him meds to keep the temp down. He was still very out of it and slept for a long time.
We went home, ordered pizza, and started calming down a bit. While I was nursing Sam before bed, I could physically feel his temperature increasing and told Bill he was having a fever spike. Right after I said that, Sam vomited and I ran upstairs to get him changed - that's when he started seizing again. We called 911 again.
Sam vomited two or three more times. Our neighbors were home this time and came over to make sure everything was okay. Danny of Six Forks EMS was one of the EMTs on call. They took everything very seriously and this time I didn't freak out in front of them because I didn't want to be separated from him.
While we were in the ambulance, Danny couldn't get a pulse ox on Sam, so he took an ECG instead. That's when he saw he was in VTAC. The lights in the ambulance came on and we got to Rex very quickly. The doctors at Rex didn't believe it was true though - they said they thought it was an artifact, something that occurred because of bumps in the road. Not so.
Our pediatricians office sent the doctor on-call and she came in to talk to us. She saw the ECG strip laying on the bed next to Sam, who by this point had had two or three more VTACs. She said, "you'd better hope that's a mistake," referring to the ECG. I didn't like her bedside manner, but after she saw the ECG, she did everything she could to get us transferred. You see, Rex said they couldn't monitor Sam on a heart monitor.
Wake Med was full. Duke was full. UNC was full. She finally called UNC again and told them exactly what happened and how serious this was. Fortunately for us, Dr. Buck was there that evening and he knew that complex (more than one) febrile seizures are an indication of Brugada Syndrome.
We were transferred to UNC - Sam had to go by himself in the ambulance and Bill and I tried to follow. When I made it to UNC, it was around midnight or one in the morning. We went through all the security checks and when I got up to the Fort that was the heart unit, I heard my baby crying. I wasn't even allowed to nurse him.
We settled in for an undetermined amount of time. My brother came to the hospital too.
They monitored Sam for several days, but because he had enough Tylenol and Motrin in him at this point, he didn't have any more fevers. Therefore, he didn't have any more arrhythmias.
We stayed for about five days at UNC. I can remember the day we left, Dr. Robinson, another cardiologist, came in and told us they were checking Sam for Long QT Syndrome or Brugada Syndrome. We had never heard of either. We left the hospital on Wednesday and had an appointment with Dr. Buck (who we still hadn't seen yet) for the following Friday.
Want to hear more? If you do, I'll share with you what happened next - if you haven't heard the story already, it'll blow your socks off.
Friday, August 22, 2008
August 22, 2007 - A Memory
One year ago today, Bill and two friends, Jane and Terry Bailey (Terry passed away in early January), took a trip to Durema Bailey's old house. Durema had been Bay Leaf Baptist Church's oldest member before she passed away.
Jane thought it would be a great idea to dig up some of her irises and transplant them into the Durema Bailey Memorial Garden at the house where we were living. Bill was, of course, chosen for the job of digging.
He brought about twenty of them home in a plastic bag and a white bucket. Before we had a chance to plant them, our lives changed forever and we had no time to get all of them in the ground. I'll post something tomorrow, but, in case you missed it, tomorrow is the one year anniversary of Sam's febrile seizures and our fateful trip to UNC where we learned of his heart condition. Feels like it's been longer than a year, right? Well, it hasn't.
We only got a few of those irises transplanted, because we were in the hospital so much over the ensuing weeks. About 10 or so stayed in the bucket and plastic bag next to our back door for the entire winter.
In March of this year, as we were packing up all of our things to move, I noticed the irises were producing leaves from inside the bucket and plastic bag. I planted a few more of them in the garden and decided to take the rest with me here. Sam and I placed them in pots and he helped me cover them with potting soil we borrowed from our next door neighbors.
I brought them with us and one of them even bloomed in mid-June. That's when Sam learned how to smell flowers.
Today, in a very non-ceremonious way, Sam and I transplanted the rest of those irises into our very own garden. To me, Durema Bailey's irises are a sweet reminder of the Hope we had a year ago when our world crashed down around us.
Even when they looked like they weren't going to bloom, and even when they didn't get any water or nutrients from me, God, in His wisdom, brought them back to life. They had a rough winter, just as we did.
Now they are with us at our new home and they are thriving.
And, a year ago tomorrow, we didn't understand what was happening. We did everything we could for Sam, even after hearing the diagnosis and not knowing if he would be with us today, God, in His wisdom, kept him with us.
I don't know what our future holds or where we will live or what job Bill will have or even if we will ever be made a complete family by finally receiving our adopted child. But, I do know that today, more than ever before in my life, I trust God. He is the One who breathes life into all beings. And, He has given me new Life in His Son, Jesus Christ. And hope.
I've said it before, but I'll say it again: If you would like a new Life like I have, please write me and let me know. teesa at mail dot com. I can help you ask Jesus to be your Saviour. You won't ever regret it.
Jane thought it would be a great idea to dig up some of her irises and transplant them into the Durema Bailey Memorial Garden at the house where we were living. Bill was, of course, chosen for the job of digging.
He brought about twenty of them home in a plastic bag and a white bucket. Before we had a chance to plant them, our lives changed forever and we had no time to get all of them in the ground. I'll post something tomorrow, but, in case you missed it, tomorrow is the one year anniversary of Sam's febrile seizures and our fateful trip to UNC where we learned of his heart condition. Feels like it's been longer than a year, right? Well, it hasn't.
We only got a few of those irises transplanted, because we were in the hospital so much over the ensuing weeks. About 10 or so stayed in the bucket and plastic bag next to our back door for the entire winter.
In March of this year, as we were packing up all of our things to move, I noticed the irises were producing leaves from inside the bucket and plastic bag. I planted a few more of them in the garden and decided to take the rest with me here. Sam and I placed them in pots and he helped me cover them with potting soil we borrowed from our next door neighbors.
I brought them with us and one of them even bloomed in mid-June. That's when Sam learned how to smell flowers.
Today, in a very non-ceremonious way, Sam and I transplanted the rest of those irises into our very own garden. To me, Durema Bailey's irises are a sweet reminder of the Hope we had a year ago when our world crashed down around us.
Even when they looked like they weren't going to bloom, and even when they didn't get any water or nutrients from me, God, in His wisdom, brought them back to life. They had a rough winter, just as we did.
Now they are with us at our new home and they are thriving.
And, a year ago tomorrow, we didn't understand what was happening. We did everything we could for Sam, even after hearing the diagnosis and not knowing if he would be with us today, God, in His wisdom, kept him with us.
I don't know what our future holds or where we will live or what job Bill will have or even if we will ever be made a complete family by finally receiving our adopted child. But, I do know that today, more than ever before in my life, I trust God. He is the One who breathes life into all beings. And, He has given me new Life in His Son, Jesus Christ. And hope.
I've said it before, but I'll say it again: If you would like a new Life like I have, please write me and let me know. teesa at mail dot com. I can help you ask Jesus to be your Saviour. You won't ever regret it.
Trust in the LORD with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight. Proverbs 3:5-6
Thursday, August 21, 2008
Grandfather Mountain
Our family had the awesome opportunity to go to Grandfather Mountain today. Samaritan's Purse and the Billy Graham Evangelistic Association had their annual picnic there and we all got to go up the mountain for free!
Plus, Billy Graham showed up - which was especially cool for me. I didn't even know who he was when I first moved to North Carolina in 1994. It wasn't until I was married to Bill and began working at our church as a custodian that I learned one of the church's interns was his grandson. Everyone made a big deal about it, but I didn't make the connection. I know, I'm a moron.
Tonight was the first time that I have ever seen him in person - he'll be 90 next week. What an honor to be in the same vicinity with someone who has had such a huge impact on so many people all over the world and who has led so many people to the Lord.
Back to Grandfather Mountain - we took Sam to the Mile High Swinging Bridge, which was very windy, and then hiked up to a really cool peak. Sam did his own little version of rock climbing while he was up there too.
We had a great picnic a little later and they had tons of those inflatable bouncy playgrounds that Sam had a fit over. He LOVED them. I wish I had taken my camera. A friend of ours emailed me this picture from the peak though:
We also got an incredibly cool package today from a friend of ours in New York. Her son has a heart condition too, so he and Sam are "heart buddies" and both part of the "Zipper Club," as many moms call it. It had two race cars in it and some other goodies. Bill and I are always so amazed at how wonderful people are to us. So, Tracie and Jason - thanks again. It really means a lot to us that you are thinking of us, even when you have similar struggles. You're a real blessing.
Plus, Billy Graham showed up - which was especially cool for me. I didn't even know who he was when I first moved to North Carolina in 1994. It wasn't until I was married to Bill and began working at our church as a custodian that I learned one of the church's interns was his grandson. Everyone made a big deal about it, but I didn't make the connection. I know, I'm a moron.
Tonight was the first time that I have ever seen him in person - he'll be 90 next week. What an honor to be in the same vicinity with someone who has had such a huge impact on so many people all over the world and who has led so many people to the Lord.
Back to Grandfather Mountain - we took Sam to the Mile High Swinging Bridge, which was very windy, and then hiked up to a really cool peak. Sam did his own little version of rock climbing while he was up there too.
We had a great picnic a little later and they had tons of those inflatable bouncy playgrounds that Sam had a fit over. He LOVED them. I wish I had taken my camera. A friend of ours emailed me this picture from the peak though:
We also got an incredibly cool package today from a friend of ours in New York. Her son has a heart condition too, so he and Sam are "heart buddies" and both part of the "Zipper Club," as many moms call it. It had two race cars in it and some other goodies. Bill and I are always so amazed at how wonderful people are to us. So, Tracie and Jason - thanks again. It really means a lot to us that you are thinking of us, even when you have similar struggles. You're a real blessing.
One final note: Sam can now repeat the alphabet letter for letter after me. I'll get some video tomorrow - he just loves doing it over and over again. He's also starting to recognize a few letters. AND, he's sleeping in his big twin bed with a railing every night with no falls at all. In fact, he will just sit in it and call for one of us when he wants to get down - despite the fact that he can actually crawl on and off of our queen bed by himself. I'm not sure how his is any different, but he seems to know he needs to stay put until Mommy or Daddy comes to get him.
Tuesday, August 19, 2008
Lijiang!!!
here is the awesome video from the today show that was on this morning.
I loved seeing Xun Ke of the Naxi Music Hall. I can't tell you how many times I have heard that performance.
I went to the dr b/c I have a lump in my wrist and ended up having it drained. It was a ganglion cyst. It had become quite painful. I'll tell you more later, b/c I can't use my right hand and it's taking forever to type this.
I loved seeing Xun Ke of the Naxi Music Hall. I can't tell you how many times I have heard that performance.
I went to the dr b/c I have a lump in my wrist and ended up having it drained. It was a ganglion cyst. It had become quite painful. I'll tell you more later, b/c I can't use my right hand and it's taking forever to type this.
China
Alright alright, very funny. No, Sam's breath didn't smell better because of eating the toilet bowl disinfectant. It didn't look red or anything either. I love all the responses that I have gotten - his own grandmother told me this morning that she'd never heard of anything like that before. I think she might have been more grossed out than we were.
We lost Internet connectivity two days ago, and then the phone went. It was all because we rearranged our living room and moved the cable box from one side to the other. I don't know what we were thinking - that we had some control over what happens in our house. But, as it turns out, we don't.
Now, here we are two days later and I had over twenty emails waiting for me. Not too many.
If any of you watched the Today show this morning, they did a special on the city we used to live in: Lijiang. It was a great segment, but they haven't put it online yet. I would love to share it with you, since there were a lot of people on there who we know. Not to mention the beauty of Lijiang...we really miss it.
Another segment they did was on 大山 (Da Shan), a Canadian gentlemen who is extremely famous in China. I loved seeing him and recognized him as soon as they showed his face. Here's the video, in case you want to see it too.
We used to learn Chinese from him on TV too.
We've got a lot of catching up to do. Lots of emails and blogs to read!
We lost Internet connectivity two days ago, and then the phone went. It was all because we rearranged our living room and moved the cable box from one side to the other. I don't know what we were thinking - that we had some control over what happens in our house. But, as it turns out, we don't.
Now, here we are two days later and I had over twenty emails waiting for me. Not too many.
If any of you watched the Today show this morning, they did a special on the city we used to live in: Lijiang. It was a great segment, but they haven't put it online yet. I would love to share it with you, since there were a lot of people on there who we know. Not to mention the beauty of Lijiang...we really miss it.
Another segment they did was on 大山 (Da Shan), a Canadian gentlemen who is extremely famous in China. I loved seeing him and recognized him as soon as they showed his face. Here's the video, in case you want to see it too.
We used to learn Chinese from him on TV too.
We've got a lot of catching up to do. Lots of emails and blogs to read!
Friday, August 15, 2008
Poison Control
I had to call poison control today because Sam put a piece of toilet bowl disinfectant from a Port-a-potty into his mouth.
First of all, yuck.
Second of all, yuck.
And third of all, what was he thinking? He said it was a rock when he found it on the sidewalk in front of the Port-a-potty and I thought it looked like a white pebble, so I let him carry it around with him. Then I was putting him in his car seat when he put it in his mouth. I immediately told him to spit it out and that's when I realized what I was dealing with.
Yuck.
It was obviously used - rounded at the edges and only a tiny piece.
Yuck.
Then I called our pedi's office and they told me to call Poison Control. Why didn't I think of that? She told me to give him four ounces of water or juice immediately and to wipe out his mouth.
I am so grossed out to think about my little boy putting something like that in his mouth. I've all but convinced myself that since it was disinfectant, it probably didn't have anything gross on it. Still...you know what I'm going to say? Yuck.
He's had some diarrhea tonight, but hopefully that will be the worst of it. The lady from Poison Control said that since he didn't ingest it he would probably be okay, but have a little irritation around his mouth.
Heavens. What else is my little boy going to do? As if I'm not already on edge ALL the time?
Yuck.
First of all, yuck.
Second of all, yuck.
And third of all, what was he thinking? He said it was a rock when he found it on the sidewalk in front of the Port-a-potty and I thought it looked like a white pebble, so I let him carry it around with him. Then I was putting him in his car seat when he put it in his mouth. I immediately told him to spit it out and that's when I realized what I was dealing with.
Yuck.
It was obviously used - rounded at the edges and only a tiny piece.
Yuck.
Then I called our pedi's office and they told me to call Poison Control. Why didn't I think of that? She told me to give him four ounces of water or juice immediately and to wipe out his mouth.
I am so grossed out to think about my little boy putting something like that in his mouth. I've all but convinced myself that since it was disinfectant, it probably didn't have anything gross on it. Still...you know what I'm going to say? Yuck.
He's had some diarrhea tonight, but hopefully that will be the worst of it. The lady from Poison Control said that since he didn't ingest it he would probably be okay, but have a little irritation around his mouth.
Heavens. What else is my little boy going to do? As if I'm not already on edge ALL the time?
Yuck.
Thursday, August 14, 2008
Nine Years Ago Today...
Bill and I got married! Happy Anniversary, Bill! I love you and I'm happy to have you home with me.
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Tuesday, August 12, 2008
Short Update
We came back to home on Monday and went straight to his doctor's office. The two of us have determined that Sam is sick with a different illness and that he was actually well for three days last week. Sam doesn't have a fever any more (praise God!) and is completely congested and coughing a lot. He obviously has aches too.
As odd as this sounds, him having a cold with actual symptoms is a good thing. We didn't have to give him a catheter on Monday, nor did we do chest x-rays. When he gets sick he generally doesn't show symptoms, but his symptoms now show us that he's got something completely different than before.
I'll keep you posted. No arrhythmias as far as I can tell...
As odd as this sounds, him having a cold with actual symptoms is a good thing. We didn't have to give him a catheter on Monday, nor did we do chest x-rays. When he gets sick he generally doesn't show symptoms, but his symptoms now show us that he's got something completely different than before.
I'll keep you posted. No arrhythmias as far as I can tell...
Sunday, August 10, 2008
Scottsville, Kentucky
We drove up to Scottsville, KY today to see my Uncle Scott and Aunt Beth. They live on the most beautiful piece of land imaginable. It's my favorite place on earth because of the memories it holds in my heart, as well as how beautiful my aunt and uncle have made it. They are basket makers in Scottsville (check out their website). They sell supplies and instructions on how to make baskets, as well as teach people how to make them. They are really amazing people and I love that Sam got to hang out with them for the afternoon.
My uncle is also extremely talented. He taught Sam how to play the drums a little bit.
Sam LOVED being able to play.
My uncle is also extremely talented. He taught Sam how to play the drums a little bit.
Sam LOVED being able to play.
Part of what I love about their home are the bright colors.
Beth has done an amazing job at gardening around the non-working farm.
I tried to get a picture of Sam sitting down in front of the old barn, but he was too excited about investigating. I had told him there were cats in the barn and he wanted to see them for himself. They're a bit wild though, so we didn't even get a glimpse.
They have this really neat fountain out front. Scott taught Sam to spray water on Mommy with it. Thanks, Scott!
Saturday, August 09, 2008
Microphonic-Sam
I got some great video of Sam using a little microphone here at Mamaw's house. Check it out!
This one shows success:
This one shows preparation:
This one shows something else:
And this one is just adorable:
I love that last one. I can remember my grandmother swinging with me on that same swing and reading to me when I was little.
This one shows success:
This one shows preparation:
This one shows something else:
And this one is just adorable:
I love that last one. I can remember my grandmother swinging with me on that same swing and reading to me when I was little.
Returning Monday
Well, Sam's low-grade fever came back, as many of you know already. So, his doctor wants us back home on Monday afternoon to do a chest x-ray and urinalysis (via catheter - ouch!). If those tests come back negative, they're going to do a CT scan of his heart and belly, to make sure there's no infection around the ICD or his heart.
Other than that, Sam is feeling terrible. He started with a runny nose last night and coughed most of the night. No fever today at all though! I've kept a little Tylenol in him since it seems like he's got some aches. He is even asleep right now and it was an hour before his normal nap time. I bet he'll take two naps today. Plus, I think his throat hurts him because he was refusing to talk before his nap.
Still, we're enjoying Nashville. My grandmother has a sun room with a porch swing and we are LOVING swinging in it. She's also got a ton of toys that have passed through the many generations who have visited the house, and Sam is greatly enjoying playing with all of them. Especially this little car that his best friend Elijah has - every time he looks at it he says, "WHY-JUH!!" It makes me miss having them together to play.
So, wherever you are Elijah and Trish, I hope you're having a great weekend. We miss you guys!
Other than that, Sam is feeling terrible. He started with a runny nose last night and coughed most of the night. No fever today at all though! I've kept a little Tylenol in him since it seems like he's got some aches. He is even asleep right now and it was an hour before his normal nap time. I bet he'll take two naps today. Plus, I think his throat hurts him because he was refusing to talk before his nap.
Still, we're enjoying Nashville. My grandmother has a sun room with a porch swing and we are LOVING swinging in it. She's also got a ton of toys that have passed through the many generations who have visited the house, and Sam is greatly enjoying playing with all of them. Especially this little car that his best friend Elijah has - every time he looks at it he says, "WHY-JUH!!" It makes me miss having them together to play.
So, wherever you are Elijah and Trish, I hope you're having a great weekend. We miss you guys!
Friday, August 08, 2008
Sam's Future Wife
We met up with some other Babyfit friends yesterday in Hermitage, TN. We ate at Center Point BBQ, one of my favorite TN-style BBQ restaurants. It's really a greasy-spoon-type restaurant, which made it a lot of fun.
Here we are: Teesa, Sam, Nikki (Sam's future wife) and Renee'.
Sam was excited to be with "Mikky" as he called her.
Nikki was sitting on the stool and Sam wanted to join her. He's investigating his fry.
Here we are: Teesa, Sam, Nikki (Sam's future wife) and Renee'.
Sam was excited to be with "Mikky" as he called her. 
Nikki was sitting on the stool and Sam wanted to join her. He's investigating his fry.
And here he is eating his fry. Oooh, they're so cute together!!!
I have some more pics, but I need to get them off my grandmother's camera first and I have no idea how to do that.
In other news, Sam has another low-grade fever. I spoke with his pedi this morning and I believe he is highly concerned. Sam went three full days with no fever at all and now he's got 100.8F. It's perplexing. His doctor said, "I don't want to overreact, but I don't want to under react either." Please pray for Sam, as you think of him today. We're staying in at his Mamaw's all day.
Wednesday, August 06, 2008
Fun in Knoxville
We got a call from Sam's doctor this morning and he said all of Sam's tests came back negative. No real surprise there, but I asked him specifically if I could take Sam to Nashville and he said he fully supported us going.
So, we took a long drive through the mountains and seven and a half hours later, we're here!
We stopped in Knoxville for a visit with a couple of our Babyfit friends, Lexi and Kristen.
Kristen made this video (great job!):
Then we headed on to Hermitage to see my grandparents, Sam and Angie (or Granddaddy and Memaw). Baby Sam really took to them and loved all the toys they brought out for him. I am so happy we got the opportunity to come over here and visit.
Afterwards, we headed over to Mary Ella's (or Mamaw). I immediately set up Sam's pack-n-play (which, incidentally, he's been sleeping in full time since we moved here and is severely warped, I learned this morning!) and put him straight to bed. He's sleeping peacefully now while the thunderstorms are rumbling around us.
It's great to be here. I only wish Bill was with us. I really miss him.
So, we took a long drive through the mountains and seven and a half hours later, we're here!
We stopped in Knoxville for a visit with a couple of our Babyfit friends, Lexi and Kristen.
Kristen made this video (great job!):
Then we headed on to Hermitage to see my grandparents, Sam and Angie (or Granddaddy and Memaw). Baby Sam really took to them and loved all the toys they brought out for him. I am so happy we got the opportunity to come over here and visit.
Afterwards, we headed over to Mary Ella's (or Mamaw). I immediately set up Sam's pack-n-play (which, incidentally, he's been sleeping in full time since we moved here and is severely warped, I learned this morning!) and put him straight to bed. He's sleeping peacefully now while the thunderstorms are rumbling around us.
It's great to be here. I only wish Bill was with us. I really miss him.
Tuesday, August 05, 2008
Update
Thanks for all your prayers - we really appreciate them.
Here's the email I got from USCIS (immigration services) today:
Here's the email I got from USCIS (immigration services) today:
USCIS received all documentation needed to process a renewal of approval.
A final decision on your renewal request will be made within the next 10 business days.
So, we are waiting on them now and it is completely out of our hands. Thank the Lord!
Our nephew, Santino is out of the hospital and resting at home tonight. He is still having diarrhea, but is not vomiting any longer. He is able to keep fluids down. Thanks for praying!
Bill said he has already seen a cloth market, Queen Victoria's palace and Mother Theresa's orphanage in Kolkata. He said they slept 11 hours last night and actually overslept for some of their sight-seeing! I told him I hoped he was enjoying his "vacation" because he can't expect to get that kind of sleep here when he returns!! They are going to begin their training tomorrow and will be in it continuously for the next week.
As far as Sam is concerned, he is doing well. His doctor's appointment yesterday showed that his lymphocytes are up from 70% last Monday to 80% now. The doctor sent away some of his blood to check for mono, of all things. He just can't figure out why Sam has had this low-grade fever going on just over two weeks. But, I took Sam's temp intermittently today and he never had anything over 100F. That means he was fever-free today - since 100.4F taken rectally is considered a fever.
I'm going to call his pedi's office in the morning to check on the mono test. We'll leave for Nashville just after lunch, if he is still fever-free and the test shows no problems. We'll probably stay until next Monday or Tuesday.
Bill took our camera with him to India, so you won't get any pics from me for another week. But, let me say that I was watching Sam pull out some books to read yesterday and when I caught his profile all I saw was Bill's mother and grandmother. I couldn't believe it. His face is changing so much. I think he has the best of both of our families. I love it!
Monday, August 04, 2008
Our Nephew
Bill's nephew, Santino, has been taken to the hospital for severe dehydration. He's been very sick and hasn't been able to keep anything down. He's only five months old. The doctors think he's got a blockage, so he's going to have an ultrasound quickly.
Again, please pray for him.
Again, please pray for him.
Adoption
Please pray this morning for our adoption process. I can't go into the details, but it has gotten very complicated, all of the sudden, and we are up against a deadline (on August 8th).
I am so frustrated with every snag we've hit. It seems to be coming to a head right now too.
Sam still has a low-grade fever and we've got a doctor's appointment this afternoon at 2:20pm. I've already put him down for a nap, since that appointment time is scheduled during his normal nap time.
I am so frustrated with every snag we've hit. It seems to be coming to a head right now too.
Sam still has a low-grade fever and we've got a doctor's appointment this afternoon at 2:20pm. I've already put him down for a nap, since that appointment time is scheduled during his normal nap time.
Friday, August 01, 2008
Mama, Night Night - PWEEEZE!
Sam is going to see the doctor today at 3:40pm. Thanks for all the encouraging words everyone has sent to me. I appreciate them.
We know God is in control and that He has His hand on Sam, that is evident.
Sam hasn't been feeling great today and even had a low-grade fever already. I gave him some Motrin - which he is expertly spitting out of his mouth now. He'll run around the house and come over to me like a little birdy to accept it, then when I lean down to give it to him he turns his head or just spits it out. I don't even know if he got the required amount.
We met our neighbor across the street today - I have met her before but didn't know much about her. She told me today that she lost her daughter to a congenital heart defect when she was 11 and a half years old in 1979. Janie, our neighbor, lives directly across the street with her goddaughter. It's a long story, but I enjoyed knowing there is someone close by who really knows what it's like to raise a special heart child. God knew I needed that and He provided it.
I learned today that I haven't done something I was supposed to do weeks ago for our adoption. I don't know how it got lost in the shuffle, but Bill and I are scrambling to get it all done before he leaves tomorrow. While I was talking with our agency, I was making Sam his grilled cheese sandwich for lunch.
I sat him down and started feeding him, while I was still talking through the details of the adoption issue. After Sam had successfully eaten all the insides of the sandwich (the crust is no good, apparently), he looked at me and said, "Mama, night night - pweeeeeze!"
I quickly got off the phone, cleaned his face and hands and scooped him up. I took him to his bedroom and he said, "duckie!" because I put his duck towel in there when he was acting crazy a couple days ago (upon his request, of course). He laid down and snuggled up to his duck towel and fell asleep immediately.
So, you see, we do lead normal lives in some capacity. A normal two year-old begged me to put him to bed for nap time. Wait a second, that's not normal! But, I'm not going to complain about that one - I'm just going to cherish it. You see, it gave me time to call Charter Communications and find out why our Internet was down. After 98 minutes on the phone, we're back online. Time for my own night night!
We know God is in control and that He has His hand on Sam, that is evident.
Sam hasn't been feeling great today and even had a low-grade fever already. I gave him some Motrin - which he is expertly spitting out of his mouth now. He'll run around the house and come over to me like a little birdy to accept it, then when I lean down to give it to him he turns his head or just spits it out. I don't even know if he got the required amount.
We met our neighbor across the street today - I have met her before but didn't know much about her. She told me today that she lost her daughter to a congenital heart defect when she was 11 and a half years old in 1979. Janie, our neighbor, lives directly across the street with her goddaughter. It's a long story, but I enjoyed knowing there is someone close by who really knows what it's like to raise a special heart child. God knew I needed that and He provided it.
I learned today that I haven't done something I was supposed to do weeks ago for our adoption. I don't know how it got lost in the shuffle, but Bill and I are scrambling to get it all done before he leaves tomorrow. While I was talking with our agency, I was making Sam his grilled cheese sandwich for lunch.
I sat him down and started feeding him, while I was still talking through the details of the adoption issue. After Sam had successfully eaten all the insides of the sandwich (the crust is no good, apparently), he looked at me and said, "Mama, night night - pweeeeeze!"
I quickly got off the phone, cleaned his face and hands and scooped him up. I took him to his bedroom and he said, "duckie!" because I put his duck towel in there when he was acting crazy a couple days ago (upon his request, of course). He laid down and snuggled up to his duck towel and fell asleep immediately.
So, you see, we do lead normal lives in some capacity. A normal two year-old begged me to put him to bed for nap time. Wait a second, that's not normal! But, I'm not going to complain about that one - I'm just going to cherish it. You see, it gave me time to call Charter Communications and find out why our Internet was down. After 98 minutes on the phone, we're back online. Time for my own night night!
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