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!
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