Friday, April 12, 2013

When the World Tilts

Have you ever had that moment when you think things are fine overall, maybe something's a tad off, but things overall are okay...then your world just tilts? You get a call from the daycare or a text from your spouse that causes you to drop everything, literally, and just run to them. This happened twice to me in two weeks. We're still "digesting" some of it.

I (Joy) am a trainer, and I go to various locations throughout the state of Missouri to provide training for our department's employees. I was preparing to leave when my husband called to say the daycare was worried about our son, Blaze, who has half a heart. He had just come from a thorough heart exam with flying colors the week before, and now he is acting confused, is lethargic and has no color in his face. I went with my husband, Tim, to pick him up from daycare, then took him to his doctor. He had strep, along with a fever, and he picked up a secondary virus along the way. He had sores develop in his mouth, down his throat and into his stomach. Blaze was miserable and unable to eat, dehydration is a heart baby's enemy and we did our best to get fluids of any sort down him. It was scary, nerve wracking and he made it through and is feeling terrific now! Whew!

I had to leave town for work the day of Blaze's strep diagnosis, and came back home late Thursday evening. Tim had been dealing with him all week, since he was unable to go to daycare. Tim's mom relieved Tim off and on during the week. Our sweet son was exhausting during this time, unable to sleep through the night without thrashing around and screaming out in pain. It was so miserable for Blaze, and challenging for Tim as the caretaker.

During that time, Tim was dealing with a reoccurance with a stomach issue that has been bothering him off and on for months. Saturday he took himself in to Urgent Care. They gave him medication, ran several tests and determined he needed an ultrasound. Since it was Easter weekend, the ultrasound needed to wait until the next week. Tim's results needed to go to a doctor, and he really needed to get established with one here, so he turned to his family doctor from childhood. At this point I was out of town again, and my mom had come down to help watch Blaze, so Tim could work. Thursday, in the middle of training, I get a text from Tim that he has been hospitalized.

My world tilted again.

I was in St. Louis and for the first time, I had two trainers from my office teaching in the next room. They were tag teaching, but one of them was more of an observant during the training. She was kind enough to fill in for me on the spot, so I could get back to Tim.

The ride back from St. Louis to Jeff City was a long one, made easier by speaking with a friend along the way. I kept reflecting on how odd it was, to be going through a medical crisis in our marriage with Tim not beside me, and I really needed to be with him. He had only been admitted for observation and testing, but I knew we'd both feel better when we were together.

Tim was discharged the following evening with a laundry list of possibilities....and one thing that took our breath away. Something I haven't mentioned in this, is that Tim is a cancer survivor. He defeated lymphomia, which God's grace and a lot of radiation and chemo, in his early twenties. He met with an oncologiest who wanted a CT scan on him in order to clear him for the year. It didn't quite work that way, they found a mass in his chest. It could be a calcified lymph node, it could be star tissue, it could be....a myriad of things. We still don't know yet. His oncology appointment is a week from today. She's coming in just for him that day, normally her office is closed. I'm going to take that as fact she's an amazing professional, going above and beyond the call of duty, and ignore the bubble of fear that makes me question why she's coming in on a day off. I am thankful to be in town this next week, and would have been with him at the oncologist, no matter what. We are expecting this appointment to not give answers, but to schedule testings with a thorasic surgeoun for a biopsy. But it's still a "big" appointment in our minds.

So now we're living in this limbo state, with our world totally off kilter. We continue to move on and trust. There's an edge, but there's also a sweetness and compassion for each other, too. Tim is doing a fanstastic job with the dietary changes he needs to make, and he's able to laugh a lot about the situation with his stomach, which still isn't resolved.

And we're praying...for each other, for our family, for healing, for a time of peace, for God to find favor with our family. During this chaos, I got a job interview for next week and we had an update on our house fiasco, which was for the positive. We can see God moving, but we're still not sure where exactly we're at. But we do know we can continue to trust in Him.

Whenever I am afraid, I will trust in You.  In God (I will praise His word), In God I have put my trust; I will not fear. What can flesh do to me?   Psalm 56:3-4



Friday, March 8, 2013

The Right Direction

We have been fighting on behalf of our son since before he was born. When we moved to the Central Missouri area, we felt good about the fact we would be near good doctors and hospitals, and cut off four hours, or so, of our drive when we need to go to St. Louis. We quickly found a cardiologist that a friend in the medical field recommended and we felt good about that. Our first visit went well, even the head of the unit was in the room, helping to sing and distract Blaze from the echo, so we could get good images of his heart.

And then...things just started slipping. He wasn't getting echos/EKGs every visit, like we were used to doing. We thought maybe it was just because he had his last surgery and maybe the urgency for those tests weren't as needed. Blaze did have a sedated echo & EKG, but we had some serious concerns about the person administering his anesthesia. Things just didn't seem right with the set up. The last appointment Blaze had with them, we were going to have an echo & EKG. I was so relieved. I needed to know what was going on with his heart. And then...Blaze cried. The woman who came in to do the test asked him if she could do the EKG, she spoke softly with both of us, and because the four year old didn't want to do it....she refused to do an EKG on him. That was my limit. We began making arrangements to see another cardiologist.

The new cardiologist seems very thorough. He is out of Cardinal Glennon Children's Medical Center in St. Louis and comes to our area once a month. He was not satisfied with the performance of the echo machine when he saw Blaze, so he requested we go to St. Louis for Blaze to have a full work up. This means that we are switching hospitals for his cardiac care in St. Louis. We've always gone with Children's. It was hard. That hospital helped save Blaze's life. I struggled with that decision, but it did make it easier knowing Blaze's surgeon had left Children's, too, and gone to Cardinal Glennon.

With our appointment looming next week, I've been lighting a fire under our cardiologist office, in order to have his medical record released. It has not been a simple process. So I called yesterday to check on things, and casually asked if they were sending everything from Children's Hospital, too. I didn't want the new hospital to have too many duplicates. My world stopped for a bit when I heard the words, "We have a few things from there, but if your new doctor needs more, you can request information from Children's after that." I double checked, "Are you saying you only have a few things from Children's?" The answer was, "Yeah, again, if they need more, ask for the info then." I thanked her and hung up, and called Children's to start that process.

I felt like I had let Blaze down for a year and a half. Why his information never went from Children's to our cardiologist is beyond me. I realize they don't need every note ever written on the child, but they should have more info on him than "a few things." He's had 3 open heart surgeries and 3 heart caths. Thankfully, Blaze appears to be doing well. She really made our decision to switch doctors totally pain free and easy.

Parents, please, always listen to your instincts about medical issues. The Holy Spirit guides us constantly and you must be an advocate on your child's behalf. I didn't know to check if they had all of his medical records, I just assumed they did. Ask questions. It's better to be "that mom" than to live in regret.

 "Whether you turn to the right or to the left, your ears will hear a voice behind you saying, 'This is the way, walk in it.'" Isaiah 30:21

So thankful we are now going in the right direction.

Monday, February 25, 2013

Thankful

Today we had an ultrasound, and what I saw brought tears to my eyes...in a good way. Today I saw a four chambered heart, beating strong, in our unborn child. It occurred to me that I had never seen that before now.

I can't help but reflect a bit in the difference in the pregnancies. With Blaze's pregnancy, I was ecstatic right until we had the news about his heart at the twenty week ultrasound. I became a fighter, a Mama Bear who must protect her child. It was no longer about me and what I felt, it was all about Blaze's survival and how to get him there. We got pregnant again when Blaze was a little over a year old. We learned that I was in the process of miscarrying at the first ultrasound, where we heard the news, "there's no heartbeat." That seemed especially cruel at the time, considering how hard we had prayed over Blaze's heart. So, with this pregnancy, I've been cautious, even hesitant about it. Guarding my heart and emotions, determined something awful would happen. Just waiting for the bad news that was sure to come. Today, I felt that burden lift.

That's not to say we're in the clear and nothing bad can happen with this pregnancy. We have a lot of factors against us. We know there's no perfect situation. But I let go of that fear and worry today. I was reminded that even if something bad had happened, God would see us through it. He is faithful.

With Blaze we learned that God answers prayer, maybe not in the way we hoped for, but He does answer. Blaze is stronger, healthier and taller than we thought he could be. He is physically so amazing, but he has a spiritual strength that is rare with children.

We can't see the steps ahead, and in some ways the path seems kind of foggy, but we're making it one step at a time...and today we celebrated a baby that is forming just as it should. We're so thankful. God is good, and we have been blessed.

For we walk by faith, not by sight. 2 Corinthians 5:7

Saturday, February 23, 2013

Big changes...and a nervous Mommy

It has been awhile since I (Joy) posted and I do want to apologize for that. At first I was distracted by some news...then I had some password issues, but we are back on track.

The big news? Our son will have a baby brother or sister in August. Blaze is thrilled to be a big brother. He wants this with all his little being. He is sure it must be a boy because there's no curly hair on the ultrasound pics. HA!

Quite honestly, I'm struggling with this a bit. Please understand, I am thrilled to be having a baby, this child will be loved and adored and celebrated. I'm nervous, though. We went the beginning of my pregnancy with Blaze just so thrilled and happy. The 20 week ultrasound was devastating. I'm just about 17 weeks and I have an appointment in two days. I keep waiting for the other shoe to drop, so to speak. This is one of the most watched babies EVER. I have some high risk factors and because of that I see a nutritionist, an OB/GYN and a maternal fetal medicine doctor every four weeks, at this stage. Our chances of having another child with a heart condition are increased, but only by 1 or 2 percent, which is an odd I like. Everything looks great, thankfully! And yet there's a part of me that wants to add "so far" to that last sentence.

Blaze's life, the miracle God granted us with Blaze, increased our faith and grew us closer as a family, but it was not an easy journey to get there. We not only went through his heart condition challenge, but there were other issues in our personal lives going on...like transmissions (yes, plural)going out.. that made life extra daunting. And that was just one of the challenges. It felt like life was throwing everything it could against us, and again with this pregnancy we've been experiencing a very challenging season of life.

So, I'm asking very humbly, for your prayers. I know with all that is in me that God is in control, He loves us and has a plan to prosper our family, to give us hope and a future, and I'm clinging to that right now.

There's a song that Third Day sings that has helped during this time. The song is, "I need a Miracle" and the chorus goes:

Well no matter who you are
And no matter what you've done
There will come a time
When you can't make it on your own
And in your hour of desperation
Know you're not the only one
Prayin' "Lord above, I need a miracle"

So, dear friends and prayer partners, I always strive to be honest and open with you.  So, in the interest of being transparent, I just wanted to share the concerns I have and what's on my heart right now. I'm struggling a bit and would appreciate your prayers. Thank you for continuing to pray and support our family. We are so incredibly blessed to have you in our lives.

"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight." Proverbs 3:5-6

Sunday, December 2, 2012

Better Together

A strange and unusual result happened with Blaze being sick most of last week. I can now play the Avengers game on the X-Box with him. For this mom, who did not grow up playing video games (although her older brother occasionally put her name for the high score on arcades across town), this was quite an accomplishment.

Blaze enjoys playing, but tires on certain parts of it. He can't read yet, so isn't sure sometimes of his mission or what is supposed to happen next. His thumb isn't quick enough to hit the "X" button rapidly enough to get the desired results. That's when I began to help.

This process happened gradually, and with some reluctance on my part. I don't want to learn to play an X-Box game, I have other things to do! But my child's coughing and begging pleas for help, overcame my hesitance.

I must say I've learned a lot. Not just with the game, but by watching Blaze. He's a quick learner, has a bit of an impatient streak (that I can totally relate to, unfortunately) and he's an amazing teacher. If I tell him I don't understand, he demonstrates what to do with the controller, then gives me a chance to try it. He explains it to the best of his ability. I had no idea my son was a natural teacher until this week. He likes to try new ways of doing things, and we've both learned a lot as a result. He does narratives and sincerely likes to show off his skills. "See? That worked! I told you it could work!" is a phrase I just heard. I've always known he was funny, but it comes out in a different way while he's playing the game through various commentaries.

I also learned my little boy is growing up. He's a fast learner and his adapting his skills. He is physically growing taller, but he's maturing, too. I can see the reasoning skills developing, and while it makes me a bit sad and yearn for the baby days, I'm so proud of the kid he's growing into.

His prayers this week have been adapting, as well. He's been thanking God for the little things, like peanuts and thanking Him for being able to crush up the shells to asking God to keep our dog from being lonely while we're gone.

Our relationship has grown. When I'm asked to help out with the game, I realize I can stop what I'm doing for a few minutes to help him out. "Sure, I'll be your partner," I recently responded. "Oh, Mom, you're my best friend" was his answer. I'm going to completely overlook the fact he often switches best friends and just soak it up.

We're learning together. We are both still learning this game and have yet to actually make it past the third level. While we're improving on it, we're "defeated" every time, much to our frustration and disappointment. We lament that fact together. Even in that, it's been funny to watch.

I think this week has been a beautiful insight into our need for others. I am so thankful for our family and friends who have been on this journey with us, those who are there when I call out for help. We are so very grateful for the many times you have come in beside us to uplift and encourage us. Thank you! We are so blessed to have you in our lives. We, as a family, have been growing and learning a lot, we're still struggling in areas. Please continue to pray for our family and the journey we are on together. Again, we say thanks...
   
"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Again, if two lie together, they keep warm, but how can one keep warm alone? And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken." Ecclesiastes 4:9-12

Oh, and if anyone out there wants to give us some tips on how to defeat that level, Blaze and I would love to hear them! : )

Saturday, November 24, 2012

Being Thankful in the (Germ) Storm

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

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.