He cracks me up in his swing... all he wants to do is lay back, relax and look at the sky!
Thursday, April 26, 2007
Ben's favorite toys
Ben has oodles and oodles of toys, but these two are some of his favorites. I just can't get over how grown up Ben is starting to look. He is definitely starting to resemble a little toddler more and more every day (minus the fact that he doesn't actually toddle, but we are working on that).
He cracks me up in his swing... all he wants to do is lay back, relax and look at the sky!
Ben's feet don't really touch the floor yet, but he still likes to be pushed around (but we have to keep a grip on him or he will tip over). Before too long, he will be wheeling himself around!
He cracks me up in his swing... all he wants to do is lay back, relax and look at the sky!
New Walker
Ben had a PT visit today and his wonderful PT brought over this awesome walker for him to borrow. It is perfect for him and gives him the support he needs to walk independently. He is still getting the hang of it, but we are just so proud of him that he is giving it a shot. Here is a video of him and his new walker!
Wednesday, April 25, 2007
Feeling better
Ben is feeling better. He's been quite the trooper during this cold... and frankly he's handling it better than I did. He is still congested, but he's not letting it set him back. Yesterday was BEAUTIFUL and we took full advantage of the weather! After Ben was done with his Aural Rehab (he did great), Mike and I took him to the park. Ben and I walked around the trail while Mike ran and we also visited with my mom and brother who were playing tennis at the park. It was a nice night. As soon as we got home and set Ben in bed, he was asleep. Ben loves being outside and I love it!
Monday, April 23, 2007
Poor Ben
After three days of increased secretions and some questionable symptoms, Ben woke up this morning feeling pretty crummy. Ben is officially sick. His little face is so swollen (this happens when Ben doesn't move around much), he is terribly junky and lethargic. Poor little guy. I know how awful I felt when I was sick and Ben seems to have the same thing (even though I tried to be so careful not to pass it on to him). I'm still not 100% and have had this cold for 11 days, so I really hope Ben doesn't follow suit.
Friday, April 20, 2007
Two under the weather, maybe?
I've been sick for the past 8 days and today Ben is starting to show signs of also feeling under the weather. I'm hoping this passes. He has much more secretions than normal and is a tad warmer to the touch. He also had a restless night last night and is snoozing more than normal today. We've been pretty fortunate with not many illnesses, so I can't really complain.
We have a date for Ben's MLB (airway scope). It is June 8 at 12:30.
I also received this story from another CHARGE mom and I just loved it and had to share.
Sounding the Alarm: Tune in to Life’s Warning Signs
By Scott Newport
Modern life is crowded with alarms, dings, bells and beeps. The dryer buzzes when the clothes are hot and ready to be folded. The oven timer dings when the lasagna is ready to be cut into squares and dished up for the family. The answering machine beeps to tell us we’ve missed an important phone call. Alarms are a good thing.Beep…Beep…Beep…Alarm clocks get us to work on time.Beep…Beep…Beep…Okay, maybe alarm clocks aren’t so great.Beep…Beep…Beep…But this isn’t an alarm clock. This beeping is different. It’s Evan’s alarm.Beep…Beep…Beep…This alarm tells me my son’s oxygen levels are unstable.Beep…Beep…Beep…Is Evan’s nurse going to check on that alarm?Beep…Beep…Beep…Okay, okay, I’ll go check it out.The insistent beeping continues as I get up from my warm computer chair and head for my son’s home-ICU.As I climb the basement stairs and pass through the darkened kitchen, I remember that Evan’s night nurse finished her shift an hour ago.Okay, now I’m panicking just a bit. My pace quickens.I enter Evan’s room. The beeping gets louder. Red warning lights flash on Evan’s ventilator, giving the room an amber glow like the inside of a space ship. In the semi-dark, I silence the alarms by pressing my favorite button: Silence/Reset. Ah, I’m granted two minutes of relief from the beeping.Is there anything in life more indulgent than the snooze button?While the ventilator is on “snooze,” I check Evan. Breathing okay. Pulse okay. I start fumbling around in his crib to find out why the alarm sounded. With all the tubes and wires in his bed, it’s like untangling extension cords in the dark. The swishing of air below his blankie clues me in on the problem: Evan rolled up in his ventilator tubing and one of the hoses detached. I quickly reconnect the circuit and straighten the tangle of wires. Now, he can breathe with the full assistance of the machine.My two-minute “reset” window is up. But the alarm is silent as if to say, “All is well.” In the quiet darkness of my boy’s room, I think back to the first time I used the “Silence/Reset” button…We were at the hospital, where Evan spent the first 252 days of his life. “Hey Scott,” the ICU nurse said, “Can you silence that alarm?” I knew what she was talking about, but I’d never dared to mess with any of the unfamiliar electronics in Evan’s small room. But, with the nurse’s permission, I was reassured that touching the button wouldn’t put Evan in harm’s way. I got up from the wooden rocking chair with the gold plaque engraved “In Loving Memory of…” and cautiously pressed the”Silence/Reset” button. Though I’d seen it used frequently, I’d never had the nerve to use it myself. Amazingly, after that day I felt like I finally gained some small control over my son’s care, some small control over the direction our life had taken.
Our New Direction
We were already a family of four when our boy, Evan, joined us in 2002. Though he was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome, Evan is much more than a diagnosis. He is a beautiful child with a happy, playful disposition and a head of angelic blonde curls.Sometimes people ask my wife, Penni, and me: “Wouldn’t it be great if you guys could go back? You know, reset your lives to a time before Evan was born?”And sometimes we hear comments like: “That’s such a shame.” “It’s just not fair.” “Do you guys ever go out just to escape?”Or the worst: “He’s going to get better, isn’t he?”No, I tell them, Evan isn’t going to get better. The disease he has is incurable. Every time, their faces fall. And as I break this news to them, some small part of me must accept that reality all over again myself.But, even if I could, I wouldn’t reset my life to before he was born. Sure, there are times when I wonder what that would be like. But life B.E. (Before Evan) would be missing all the things Evan has given us: A higher standard to live by. More compassion for others. A rare sense of how precious life is.Here’s the thing. My life was reset. Evan pushed the button.
Pushing Your Buttons
Who–or what–is pushing your buttons? I’m not talking about your boss or rush-hour drivers or your mouthy teenager “pushing your buttons.” I’m talking about that thing that pushes your “silence” button, pushes your “reset” button. That thing that stops you right in your tracks.And there you stand. There are no words. There is no reason. There’s nowhere to go but up. Maybe for you, like it was for me, it’s a diagnosis or health issue. Maybe it’s a family crisis. A problem at work. A divorce.The lesson I’ve learned from Evan, and want to share with you, is that, in the midst of a difficult life event, don’t give up. Don’t give audience to the thoughts of “If only…” and “I wonder if…” and “I wish that…” Embrace joy where you find it–in the poignant, the bittersweet, the temporary. Those moments are sometimes so subtle, they flutter into our lives for just a moment and, if we’re not paying attention, are gone in the next blink.I think we need to learn to actually choose to push the “silence/reset” button. To sit still. To appreciate more. To wonder about life. To adjust our thinking and retool our attitudes. To juggle out priorities away from what’s just pressing and toward what’s truly important. To have grace with ourselves, and to give ourselves permission to “reset,” even if only for a short while–just long enough to get the energy we need to continue.
Alarms Are Good
When an alarm goes off in our lives, we need to sit up and pay attention. We need to leave the burning building. We need to pull over and let the ambulance pass.But we also need to heed the alarms or “warning signs” that are more inconspicuous.We need to recognize the early signs of depression–in yourself or someone you love. We need to confront teenage behavior that may indicate drug or alcohol use. When we get that “gut feeling,” we need to choose not to leave your child with someone that you “just don’t feel right” about. We need to acknowledge that there’s distance in your marriage that shouldn’t be there and fight to get it back.Because my son is terminally ill, I’ve met more than my fair share of parents whose children have died. I find it interesting that these moms and dads almost always feel compelled to tell the story of those last few moments with their little boy or girl. If, at the end, there was nothing else that could be done, they just turn off the alarms. That’s why I never really complain about Evan’s alarms.Life is risky. When the alarm sounds, it means we’re alive. And if we hear the alarms, it means we’re tuned in–which is more than just being alive, it’s really living.
About the AuthorScott Newport lives in Michigan with his three children and wife, Penni. His son, Evan, now four years old, is diagnosed with Noonan’s Syndrome and hypertrophic cardiomyopathy. If Scott had a bumper sticker on his car, it would read: “Proud Parent of a PICU Soldier.”
We have a date for Ben's MLB (airway scope). It is June 8 at 12:30.
I also received this story from another CHARGE mom and I just loved it and had to share.
Sounding the Alarm: Tune in to Life’s Warning Signs
By Scott Newport
Modern life is crowded with alarms, dings, bells and beeps. The dryer buzzes when the clothes are hot and ready to be folded. The oven timer dings when the lasagna is ready to be cut into squares and dished up for the family. The answering machine beeps to tell us we’ve missed an important phone call. Alarms are a good thing.Beep…Beep…Beep…Alarm clocks get us to work on time.Beep…Beep…Beep…Okay, maybe alarm clocks aren’t so great.Beep…Beep…Beep…But this isn’t an alarm clock. This beeping is different. It’s Evan’s alarm.Beep…Beep…Beep…This alarm tells me my son’s oxygen levels are unstable.Beep…Beep…Beep…Is Evan’s nurse going to check on that alarm?Beep…Beep…Beep…Okay, okay, I’ll go check it out.The insistent beeping continues as I get up from my warm computer chair and head for my son’s home-ICU.As I climb the basement stairs and pass through the darkened kitchen, I remember that Evan’s night nurse finished her shift an hour ago.Okay, now I’m panicking just a bit. My pace quickens.I enter Evan’s room. The beeping gets louder. Red warning lights flash on Evan’s ventilator, giving the room an amber glow like the inside of a space ship. In the semi-dark, I silence the alarms by pressing my favorite button: Silence/Reset. Ah, I’m granted two minutes of relief from the beeping.Is there anything in life more indulgent than the snooze button?While the ventilator is on “snooze,” I check Evan. Breathing okay. Pulse okay. I start fumbling around in his crib to find out why the alarm sounded. With all the tubes and wires in his bed, it’s like untangling extension cords in the dark. The swishing of air below his blankie clues me in on the problem: Evan rolled up in his ventilator tubing and one of the hoses detached. I quickly reconnect the circuit and straighten the tangle of wires. Now, he can breathe with the full assistance of the machine.My two-minute “reset” window is up. But the alarm is silent as if to say, “All is well.” In the quiet darkness of my boy’s room, I think back to the first time I used the “Silence/Reset” button…We were at the hospital, where Evan spent the first 252 days of his life. “Hey Scott,” the ICU nurse said, “Can you silence that alarm?” I knew what she was talking about, but I’d never dared to mess with any of the unfamiliar electronics in Evan’s small room. But, with the nurse’s permission, I was reassured that touching the button wouldn’t put Evan in harm’s way. I got up from the wooden rocking chair with the gold plaque engraved “In Loving Memory of…” and cautiously pressed the”Silence/Reset” button. Though I’d seen it used frequently, I’d never had the nerve to use it myself. Amazingly, after that day I felt like I finally gained some small control over my son’s care, some small control over the direction our life had taken.
Our New Direction
We were already a family of four when our boy, Evan, joined us in 2002. Though he was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome, Evan is much more than a diagnosis. He is a beautiful child with a happy, playful disposition and a head of angelic blonde curls.Sometimes people ask my wife, Penni, and me: “Wouldn’t it be great if you guys could go back? You know, reset your lives to a time before Evan was born?”And sometimes we hear comments like: “That’s such a shame.” “It’s just not fair.” “Do you guys ever go out just to escape?”Or the worst: “He’s going to get better, isn’t he?”No, I tell them, Evan isn’t going to get better. The disease he has is incurable. Every time, their faces fall. And as I break this news to them, some small part of me must accept that reality all over again myself.But, even if I could, I wouldn’t reset my life to before he was born. Sure, there are times when I wonder what that would be like. But life B.E. (Before Evan) would be missing all the things Evan has given us: A higher standard to live by. More compassion for others. A rare sense of how precious life is.Here’s the thing. My life was reset. Evan pushed the button.
Pushing Your Buttons
Who–or what–is pushing your buttons? I’m not talking about your boss or rush-hour drivers or your mouthy teenager “pushing your buttons.” I’m talking about that thing that pushes your “silence” button, pushes your “reset” button. That thing that stops you right in your tracks.And there you stand. There are no words. There is no reason. There’s nowhere to go but up. Maybe for you, like it was for me, it’s a diagnosis or health issue. Maybe it’s a family crisis. A problem at work. A divorce.The lesson I’ve learned from Evan, and want to share with you, is that, in the midst of a difficult life event, don’t give up. Don’t give audience to the thoughts of “If only…” and “I wonder if…” and “I wish that…” Embrace joy where you find it–in the poignant, the bittersweet, the temporary. Those moments are sometimes so subtle, they flutter into our lives for just a moment and, if we’re not paying attention, are gone in the next blink.I think we need to learn to actually choose to push the “silence/reset” button. To sit still. To appreciate more. To wonder about life. To adjust our thinking and retool our attitudes. To juggle out priorities away from what’s just pressing and toward what’s truly important. To have grace with ourselves, and to give ourselves permission to “reset,” even if only for a short while–just long enough to get the energy we need to continue.
Alarms Are Good
When an alarm goes off in our lives, we need to sit up and pay attention. We need to leave the burning building. We need to pull over and let the ambulance pass.But we also need to heed the alarms or “warning signs” that are more inconspicuous.We need to recognize the early signs of depression–in yourself or someone you love. We need to confront teenage behavior that may indicate drug or alcohol use. When we get that “gut feeling,” we need to choose not to leave your child with someone that you “just don’t feel right” about. We need to acknowledge that there’s distance in your marriage that shouldn’t be there and fight to get it back.Because my son is terminally ill, I’ve met more than my fair share of parents whose children have died. I find it interesting that these moms and dads almost always feel compelled to tell the story of those last few moments with their little boy or girl. If, at the end, there was nothing else that could be done, they just turn off the alarms. That’s why I never really complain about Evan’s alarms.Life is risky. When the alarm sounds, it means we’re alive. And if we hear the alarms, it means we’re tuned in–which is more than just being alive, it’s really living.
About the AuthorScott Newport lives in Michigan with his three children and wife, Penni. His son, Evan, now four years old, is diagnosed with Noonan’s Syndrome and hypertrophic cardiomyopathy. If Scott had a bumper sticker on his car, it would read: “Proud Parent of a PICU Soldier.”
Wednesday, April 11, 2007
Monday Appointment
On Monday Ben saw his ENT doctor to discuss his airway inflammation and damage. ENT has agreed that his damage has to be caused by aspirating his saliva. It seems like the drool procedure has helped with the amount of secretions he has, so hopefully his airway is starting to heal. In three months, they are going to put him under and take a look. His cochlear implant doctor is also going to clean out his ears at the same time. This should all be doing on an outpatient basis (YAY, this is a first for Ben). We haven't received a date yet because they are having to coordinate the two doctor's schedules.
One of Ben's CHARGE friends turns 2 today. Happy Birthday Eva!
One of Ben's CHARGE friends turns 2 today. Happy Birthday Eva!
Professional Pictures
Ben got professional pictures taken today for the first time. While we were waiting to be called, Ben started getting very tired - and it was an hour and a half before his nap time. When Ben was finally called, I think he was a little overwhelmed with the whole scene AND very tired... so he was NOT a happy camper. He didn't want to let go of his froggie pacifier and he wouldn't stop crying. We got creative and were able to get some great shots (by being creative, I mean I would pat Ben, calm him down and let him suck away on his pacifier - I would then count to three, jump out of the photo and pull the pacifier away at the same time. By doing this, the photographer could snap two good photos before Ben realized what happened). Well here are our four favorite ones! You wouldn't even know Ben was on the verge of tears! They did such a wonderful job.
I didn't order this one, but just had to add a picture of "upset" Ben. These are what the rest of his photos looked like.
Friday, April 6, 2007
Happy Easter
We just wanted to wish everyone a very happy and safe Easter holiday. If only we had warmer weather here. Mike, Ben and I will be traveling to Dayton to celebrate Easter with Grandma Deb, Pap Pap, Uncle Aaron and Aunt Jen.
Take care!
Take care!
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