We are in the midst of a battle against germs. Two separate infections are wreaking havoc on our little guy and we are doing our best to not get them ourselves and to help him overcome them. Have you ever tried to explain to a four year old why he shouldn't throw his beloved stuffed animal (the one he's goobed on all night long) in your face? Or what contagious means? Why even though he does have pink eye and it's itchy, he shouldn't rub his eyes? It's been a little challenging in our household. Sleep has been non-existent or interrupted for three straight nights. It tends to make a momma a little cranky.
However, this is Thanksgiving week, and we have much to be grateful for. Even in such a time as this, we can have gratitude in our hearts.
I'm so grateful for Blaze, even as he's germing up the place...he's here. He's alive. His heart is strong, even with just two chambers. I'm thankful for the toys as I disinfect them, it means he's feeling well enough to play. I'm glad beyond words that he's a good medicine taker now, and that our trip to the ER in the middle of the night had no tears or fussing in it (despite x-rays to check for pneumonia.) I'll also glad I'm thrilled he doesn't have pneumonia.
Tim has a job that he loves and feels called to work. This past week he helped a missionary in Africa connect to his wireless account. Amazing! Tim has been feeling better, too, and that has been such an incredible blessing.
I have a job that I love, and a fantastic group of co-workers. I've never worked in a place so drama-free...at least when I'm in the office, training's always an adventure! I have the opportunity to pour into people whose job is to serve others. I've also been able to write some about Blaze and our journey. The first of those articles was published last week! I'm praying someone finds comfort in our experiences.
We have such a loving and terrific family, amazing friends and church family. We are blessed.
We have so much to be thankful for, beyond Lysol wipes and Puffs! God remains good and faithful, and we will continue to praise Him! In everything give thanks, for this is the will of God in Christ Jesus concerning you. I Thessalonians 5:18
Saturday, November 24, 2012
Wednesday, November 7, 2012
The Tumble
Blaze has been taking gymnastics lessons through the day care. A bus comes to his preschool and they learn gymnastic moves in the bus. Blaze enjoys the lessons and occasionally demonstrates some moves, but tonight I saw a tumble that took my breath away.
Blaze was walking with his hands in his coat pockets, tripped, and fell (face first) onto the concrete curb, but continued to roll onto the grass and then somehow ended up on his feet. His chin was scraped up, he bled a bit, bruised his face and was in pain. I ached for our boy. He refused a band-aid, he has a fear of them, and even though he takes aspirin, the bleeding was not too bad, thankfully! But despite the fall, he landed on his feet.
I had something similar happen when we were at Children's for his second surgery. I came out of our room with a food tray, turned to shut the door, turned again and took the longest stumble of my life. I had the tray in my hands, at one point the tray touched the ground, but I kept going. I didn't stop until the tray had landed on the correct cart and I was sprawled across the tray. I had to peel some of the trash off of my shirt before I turned around. Somehow I stayed upright. I slowly turned around and was mortified to see a large cardiology team staring at me with their mouths open. One slowly said, "I thought for sure you had bit it." I walked away in total embarrassment. Some quick thinking nurse moved the wheelchair that I had tripped over, before I got back to the room-just in case! I think back on that time and laugh out loud at the memory. What was mortifying before is now a memory that brings a smile.
Life tends to do that to us...there are times when we stumble and fall. How amazing when we can land on our feet and continue on. Proverbs 3:23 "Then you will walk on your way securely, and your foot will not stumble." We all fall down, hopefully we get up, adjust and try again! So thankful that God's mercies are new every morning and He extends grace for the day.
Blaze and his cousin will be participating in an "Olympics" on Saturday. It's not a competition, but a demonstration of what they've been learning. So thankful for my strong, healthy boy, who doesn't let a "little thing" like 1/2 a heart slow him down. Excited to see his accomplishments, and praying he always continues to land on his feet.
Blaze was walking with his hands in his coat pockets, tripped, and fell (face first) onto the concrete curb, but continued to roll onto the grass and then somehow ended up on his feet. His chin was scraped up, he bled a bit, bruised his face and was in pain. I ached for our boy. He refused a band-aid, he has a fear of them, and even though he takes aspirin, the bleeding was not too bad, thankfully! But despite the fall, he landed on his feet.
I had something similar happen when we were at Children's for his second surgery. I came out of our room with a food tray, turned to shut the door, turned again and took the longest stumble of my life. I had the tray in my hands, at one point the tray touched the ground, but I kept going. I didn't stop until the tray had landed on the correct cart and I was sprawled across the tray. I had to peel some of the trash off of my shirt before I turned around. Somehow I stayed upright. I slowly turned around and was mortified to see a large cardiology team staring at me with their mouths open. One slowly said, "I thought for sure you had bit it." I walked away in total embarrassment. Some quick thinking nurse moved the wheelchair that I had tripped over, before I got back to the room-just in case! I think back on that time and laugh out loud at the memory. What was mortifying before is now a memory that brings a smile.
Life tends to do that to us...there are times when we stumble and fall. How amazing when we can land on our feet and continue on. Proverbs 3:23 "Then you will walk on your way securely, and your foot will not stumble." We all fall down, hopefully we get up, adjust and try again! So thankful that God's mercies are new every morning and He extends grace for the day.
Blaze and his cousin will be participating in an "Olympics" on Saturday. It's not a competition, but a demonstration of what they've been learning. So thankful for my strong, healthy boy, who doesn't let a "little thing" like 1/2 a heart slow him down. Excited to see his accomplishments, and praying he always continues to land on his feet.
Thursday, November 1, 2012
Cardiology Appointment
There's something about a doctor's appointment that either allows a child to shine...or causes him to be the screaming, melting kid that causes others to gasp. We've been through many phases of this, sometimes even in the same appointment! Our previous cardiology appointment was an amazing example of the latter. Our four-year-old got his weight measured, stood proudly to measure his height, did not hestiate to have his arm "hugged" by the blood pressure cuff (although he hestiated to lay down to do so), but took convincing to have his pulse-ox measured. He eventually cooperated and received a book/cd "treasure" as a reward.
And then it happened. We walked into the examining room and wanted to take his shirt off, he screamed when I lifted it over his head. It wasn't a good sign of things to come. When she wheeled the EKG into the room he became an absolute madman. We stuck the stickers on each other, the technician and I. We demonstrated how the alligator clips clamp onto the tag on the sticker and would absolutely not attach to him directly. She even left and came back a couple of times. And even though he did NOT try to kick her and SPIT on her as he has done to others in the past in his rage, he was an absolute terror...or was he? Was he a terror or was he in terror? That's the thing to all this. As a parent who has been with him his entire life, we've been beside him through surgeries, recoveries, heart caths, a feeding tube, drainage tubes, PICC lines, countless IVs, external heart defibrillators and really awful shots. I couldn't tell if he was just throwing a fit or if he was traumatized by what was going on. It seems so silly that after everything he's gone through that STICKERS would put him over the edge. In all honesty though, the kid HATES bandaids. He will only have a bandaid on his body if he is bleeding quite a bit. He is a strong fighter, just like we always prayed for him to be. But, oh, how I wished he would cooperate. There were bribes, tears (his and almost mine), explanations...we'd prepared him ahead of time for this. He totally refused. We got close once and he screamed, tried to eat his shirt and hid behind me. What do you do at a time like that? I know what I wanted to do. I wanted to force him to have the EKG. My need to know, to absolutely be sure that things were going okay with his heart, overweighed my desire for him to not have the test. The technician and cardiologist made the call. He (again) did not have to have the EKG.
I was so disappointed and discouraged. I'll be the first to admit, I have some issues with doctors and cardiologists. I don't feel comfortable in not knowing how his heart is doing.
Here's what I saw, though. I saw a strong kid, one that was not weak or even had a hint of illness. I saw a child with pink cheeks from his battle, but pink all the same, which is something that wouldn't have happened in the past. I saw a kid who felt good enough to take on the adults around him, and in the end was persuasive enough to get his way. Doesn't sound like a heart baby. He's definitely come a long way, and I am so grateful!
Blaze is not scheduled to have another cardiology appoint with this cardiology unit until April, his last one was this past March. At that time they are hoping he will be mature enough to have an EKG & echo without sedation. I do realize that every cardiologist has their own style of handling things. I like this doctor, he's a good guy. I feel comfortable with him. Our cardiologist in Springfield always had Blaze do an EKG & echo every visit. I wasn't sure if that was because there was always another surgery coming up or since Blaze is done with his planned surgeries if they would be more lax with them. So I asked that cardiology office. If they were still working with us, Blaze would have both tests done every six or nine months.
So...we're seeking another opinion. There is a cardiologist from Cardinal Glennon hospital who comes to our area every month. We've left message with the scheduler and haven't heard back so far. This doctor, though, is one that a friend's child goes to and we feel comfortable with this decision. It's been hard, we've always dealt with Children's Hospital, and in the past year or so we've come to the conclusion that it's okay to switch to CG. There are so many emotions involved with this decision, we'll see what happens with it all. A lot is still in the air for us and for Mr. Blaze's care. We're continuing to trust God's plan for Blaze and believing He has the best in store.
Please continue to pray for us. We are so blessed to have you in our lives!
And then it happened. We walked into the examining room and wanted to take his shirt off, he screamed when I lifted it over his head. It wasn't a good sign of things to come. When she wheeled the EKG into the room he became an absolute madman. We stuck the stickers on each other, the technician and I. We demonstrated how the alligator clips clamp onto the tag on the sticker and would absolutely not attach to him directly. She even left and came back a couple of times. And even though he did NOT try to kick her and SPIT on her as he has done to others in the past in his rage, he was an absolute terror...or was he? Was he a terror or was he in terror? That's the thing to all this. As a parent who has been with him his entire life, we've been beside him through surgeries, recoveries, heart caths, a feeding tube, drainage tubes, PICC lines, countless IVs, external heart defibrillators and really awful shots. I couldn't tell if he was just throwing a fit or if he was traumatized by what was going on. It seems so silly that after everything he's gone through that STICKERS would put him over the edge. In all honesty though, the kid HATES bandaids. He will only have a bandaid on his body if he is bleeding quite a bit. He is a strong fighter, just like we always prayed for him to be. But, oh, how I wished he would cooperate. There were bribes, tears (his and almost mine), explanations...we'd prepared him ahead of time for this. He totally refused. We got close once and he screamed, tried to eat his shirt and hid behind me. What do you do at a time like that? I know what I wanted to do. I wanted to force him to have the EKG. My need to know, to absolutely be sure that things were going okay with his heart, overweighed my desire for him to not have the test. The technician and cardiologist made the call. He (again) did not have to have the EKG.
I was so disappointed and discouraged. I'll be the first to admit, I have some issues with doctors and cardiologists. I don't feel comfortable in not knowing how his heart is doing.
Here's what I saw, though. I saw a strong kid, one that was not weak or even had a hint of illness. I saw a child with pink cheeks from his battle, but pink all the same, which is something that wouldn't have happened in the past. I saw a kid who felt good enough to take on the adults around him, and in the end was persuasive enough to get his way. Doesn't sound like a heart baby. He's definitely come a long way, and I am so grateful!
Blaze is not scheduled to have another cardiology appoint with this cardiology unit until April, his last one was this past March. At that time they are hoping he will be mature enough to have an EKG & echo without sedation. I do realize that every cardiologist has their own style of handling things. I like this doctor, he's a good guy. I feel comfortable with him. Our cardiologist in Springfield always had Blaze do an EKG & echo every visit. I wasn't sure if that was because there was always another surgery coming up or since Blaze is done with his planned surgeries if they would be more lax with them. So I asked that cardiology office. If they were still working with us, Blaze would have both tests done every six or nine months.
So...we're seeking another opinion. There is a cardiologist from Cardinal Glennon hospital who comes to our area every month. We've left message with the scheduler and haven't heard back so far. This doctor, though, is one that a friend's child goes to and we feel comfortable with this decision. It's been hard, we've always dealt with Children's Hospital, and in the past year or so we've come to the conclusion that it's okay to switch to CG. There are so many emotions involved with this decision, we'll see what happens with it all. A lot is still in the air for us and for Mr. Blaze's care. We're continuing to trust God's plan for Blaze and believing He has the best in store.
Please continue to pray for us. We are so blessed to have you in our lives!
Wednesday, October 31, 2012
Just one more cast...
My dad, Loren Fox, was a bi-vocational pastor who loved to fish. Fishing was his escape from the world, and gave him peace. If it was a Saturday between March 1st and October 31st, there was a good chance we were at Bennett Spring State Park.
As a child I would endure the 100 mile trip there and back. It was easier after I could read, they would just buy a new Archie comic book...a digest, typically...and I would be good to go. I became the queen of "how much farther is it?" and that, too, died off when I figured out certain landmarkers. At the park I was a "Junior Naturalist" at least 5 times. There wasn't a nature trail in the area we hadn't walked, a nature center display that my mom and I hadn't covered or a hatchery fish that went hungry with us around.
There came a point in every trip where I became restless. I would be ready to move on to the next thing or ready to eat or just ready to be home. My mom would send me out to talk to Dad, in order to find out how much longer he would be. The answer was almost always, "one more cast." Dad loved to "roll cast" as he would flyfish for rainbow trout. The only guarantee that Dad would actually stop fishing was when the whistle blew. I can't tell you how many thousands of casts took place after that phrase was said. I'm sure he had the intention of stopping...but it was hard to quit. A lunker might be waiting at that next cast, and when you're in a place you love, doing what you love...well, it's hard to stop.
There are days where I would rather just throw my hands up in the air and say, "enough's enough." I make it a goal to not say "it's just not", but there are times when things seem just so hopeless. Feelings are so deceitful. Faith is what keeps you saying, "Lord, I don't understand what is going on, but I trust you." Just like my dad, who was hopeful that the next cast would reward him with the fish he desired, we have to keep holding on to hope. Don't let the world (or a child) distract you from giving God the attention he deserves. He is faithful. Keep trusting and believing, despite the circumstances you find yourself in. The help you need is waiting there...just one more cast can make all the difference.
As a child I would endure the 100 mile trip there and back. It was easier after I could read, they would just buy a new Archie comic book...a digest, typically...and I would be good to go. I became the queen of "how much farther is it?" and that, too, died off when I figured out certain landmarkers. At the park I was a "Junior Naturalist" at least 5 times. There wasn't a nature trail in the area we hadn't walked, a nature center display that my mom and I hadn't covered or a hatchery fish that went hungry with us around.
There came a point in every trip where I became restless. I would be ready to move on to the next thing or ready to eat or just ready to be home. My mom would send me out to talk to Dad, in order to find out how much longer he would be. The answer was almost always, "one more cast." Dad loved to "roll cast" as he would flyfish for rainbow trout. The only guarantee that Dad would actually stop fishing was when the whistle blew. I can't tell you how many thousands of casts took place after that phrase was said. I'm sure he had the intention of stopping...but it was hard to quit. A lunker might be waiting at that next cast, and when you're in a place you love, doing what you love...well, it's hard to stop.
There are days where I would rather just throw my hands up in the air and say, "enough's enough." I make it a goal to not say "it's just not", but there are times when things seem just so hopeless. Feelings are so deceitful. Faith is what keeps you saying, "Lord, I don't understand what is going on, but I trust you." Just like my dad, who was hopeful that the next cast would reward him with the fish he desired, we have to keep holding on to hope. Don't let the world (or a child) distract you from giving God the attention he deserves. He is faithful. Keep trusting and believing, despite the circumstances you find yourself in. The help you need is waiting there...just one more cast can make all the difference.
Monday, October 22, 2012
Peace
Blaze has a cardiology appointment. It's his first check up since his seizure this spring. I have such a peace going into the appointment tomorrow. We've been blessed beyond measure. God has a plan and a purpose for Blaze, I have no reason to doubt that. So, I will continue to cling to peace and pray for that future.
I would ask, though, that you join us in prayer over Blaze cardiology care. We've been taking him to a heart clinic in Columbia and we are feeling lead to get a second opinion. Things get complicated with insurance and there aren't many choices in our area. We may need to take him to St. Louis for check ups, which gets tricky! I am thankful such quality care is not too far away. We've even considered taking him back to his former cardiologist, which is a longer trip than to St. Louis! We'll see. It's good to have options. We just want what's best for Blaze.
Blaze has been making me laugh at his evening prayers. When he goes to bed he's been delaying bed time just as long as he can by repeating, "God, please help me to be strong. I know you want me to eat my vegetables, but God, I don't like vegetables. Your word tells us to eat them, but I just hate them, especially brocolli. Please keep me healthy and strong anyway. In your heavenly name, I'm sorry I don't like them, Amen."
Never a dull moment!
So thankful for my strong, funny boy. Thanks for your continued prayers!
(Please pray, too, for our house to sell. Thank you!)
Joy
I would ask, though, that you join us in prayer over Blaze cardiology care. We've been taking him to a heart clinic in Columbia and we are feeling lead to get a second opinion. Things get complicated with insurance and there aren't many choices in our area. We may need to take him to St. Louis for check ups, which gets tricky! I am thankful such quality care is not too far away. We've even considered taking him back to his former cardiologist, which is a longer trip than to St. Louis! We'll see. It's good to have options. We just want what's best for Blaze.
Blaze has been making me laugh at his evening prayers. When he goes to bed he's been delaying bed time just as long as he can by repeating, "God, please help me to be strong. I know you want me to eat my vegetables, but God, I don't like vegetables. Your word tells us to eat them, but I just hate them, especially brocolli. Please keep me healthy and strong anyway. In your heavenly name, I'm sorry I don't like them, Amen."
Never a dull moment!
So thankful for my strong, funny boy. Thanks for your continued prayers!
(Please pray, too, for our house to sell. Thank you!)
Joy
Sunday, October 21, 2012
"Normal"
Sometimes it's the "normal" kid stuff that gets me. Things like head lice can really shake me up. Ear infections, hair cuts...and oh my goodness, potty training...that took forever! Things that every child has to go through, but somehow we wish our child could be exempted from. He's had 3 heart surgeries, shouldn't that be enough? But, no, it's not an exemption for the rest of life and the trials therein.
For the first 3 years of Blaze's life, we kept him at home. His grown up cousin, Melissa, lived with us and watched him. After his last surgery we decided to go ahead and put him in daycare. He's in preschool classes now. Along with that came a whole new set of challenges. He became sick more frequently, he's gotten head lice twice, he hears things we try to shield him from and he has outgrown his favorite teacher's class. Already he has been heartbroken for a teacher...and he's learned what frustrates this new one and tries to use it to his advantage. He's sounding out words and learning to write his letters. All "normal" kid stuff.
And in the midst of the chaos, I'm grateful. So thankful that he's healthy enough for all of this. So pleased he's made friends and he's learning his way. So excited to see how very strong he is.
There's been pain in the process. We're learning together. Some things have been harder than others, but what a blessing it's been.
Blaze is to the point now that people don't automatically suspect he's ever been ill. That's a fantastic place to be. It's hard sometimes, though. We mommies want to bubble wrap our kids sometimes and this little man just will not be bubble wrapped! I'm thankful for that.
There are times where I am just shocked by my child's strong will, and determined nature. My husband will remind me that we prayed for him to be strong, even before he was born. We needed a kid determined to make it and willing to fight, and that's definitely what we have.
We're adjusting to "normal." It really is a miracle to be at this point. So grateful for this opportunity and what we've been given.
What's normal to you?
So grateful to our extraordinary God for even the "ordinaries".
For the first 3 years of Blaze's life, we kept him at home. His grown up cousin, Melissa, lived with us and watched him. After his last surgery we decided to go ahead and put him in daycare. He's in preschool classes now. Along with that came a whole new set of challenges. He became sick more frequently, he's gotten head lice twice, he hears things we try to shield him from and he has outgrown his favorite teacher's class. Already he has been heartbroken for a teacher...and he's learned what frustrates this new one and tries to use it to his advantage. He's sounding out words and learning to write his letters. All "normal" kid stuff.
And in the midst of the chaos, I'm grateful. So thankful that he's healthy enough for all of this. So pleased he's made friends and he's learning his way. So excited to see how very strong he is.
There's been pain in the process. We're learning together. Some things have been harder than others, but what a blessing it's been.
Blaze is to the point now that people don't automatically suspect he's ever been ill. That's a fantastic place to be. It's hard sometimes, though. We mommies want to bubble wrap our kids sometimes and this little man just will not be bubble wrapped! I'm thankful for that.
There are times where I am just shocked by my child's strong will, and determined nature. My husband will remind me that we prayed for him to be strong, even before he was born. We needed a kid determined to make it and willing to fight, and that's definitely what we have.
We're adjusting to "normal." It really is a miracle to be at this point. So grateful for this opportunity and what we've been given.
What's normal to you?
So grateful to our extraordinary God for even the "ordinaries".
Monday, October 15, 2012
You just never know
A little girl named Addison Scott went to be with the Lord tonight. She was born with HLHS, the same condition Blaze has. Addi had the Fontan, her 3rd surgery, in June. For some reason she went into heart failure, had a heart transplant the end of September and now she's gone. Every day is a gift. Somehow we get in our little bubbles and busy-ness and we forget. Then a little life like Addi's reminds us to make little moments count.
And tonight, a little guy named Preston got a call that the heart that he has been waiting on has arrived. His life looked very grim and suddenly he has a new chance, another hope. While his donor's family grieves their loss, Preston and his family have another chance. Praying for a smooth, successful surgery.
Praying for all the families tonight of those who mourn. So grateful for the hope that we have in Christ. Thankful we can cling to His promises, even when life does not make sense.
I sat next to Blaze's bed and watched his peaceful sleep for some time tonight. So thankful...so blessed...so aware that we've been given the gift of another day with him, as challenging as that day might be! Holding on to hope.
And tonight, a little guy named Preston got a call that the heart that he has been waiting on has arrived. His life looked very grim and suddenly he has a new chance, another hope. While his donor's family grieves their loss, Preston and his family have another chance. Praying for a smooth, successful surgery.
Praying for all the families tonight of those who mourn. So grateful for the hope that we have in Christ. Thankful we can cling to His promises, even when life does not make sense.
I sat next to Blaze's bed and watched his peaceful sleep for some time tonight. So thankful...so blessed...so aware that we've been given the gift of another day with him, as challenging as that day might be! Holding on to hope.
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