I apologize for not updating sooner; I'm a working girl again... Not much time for blogging lately, BUT I wanted everyone to know that Micah got a great report at his doctor's appointment last week.
Dr. R said Micah is responding well to the meds, and his immune system appears to be dealing with some of the viral issues more effectively. He also thinks Micah's liver is functioning better. We haven't had his liver tests re-run yet, but we probably will in the next few months.
Micah is happy and active this summer, playing lots of basketball and riding the new Tony Hawk bike he got for his 7th birthday.
Thanks, as always, for all of your prayers and support. We are so grateful to God for the good work he's doing in Micah's little body.
Sunday, July 5, 2009
Monday, March 2, 2009
Appointment Results
After an excruciating two-HOUR wait, we saw the gastroenterologist for three minutes. In that three minutes, he basically said that we should have the labs re-run and "watch" Micah to see if he develops symptoms such as loss of weight or appetite (Ha! This kid eats us out of house and home.), fatigue or muscle aches.
Predictably, the GI doc wasn't thrilled that we're taking Micah to my doctor, but that doesn't deter us. We're used to that reaction from physicians. I wish I had a nickel for every time a medical professional snubbed his (or her) nose at the one protocol that has actually helped me feel better and function well, not to mention brought my liver panel results completely within the normal ranges for the first time in almost 20 years. You would think my experience alone would be enough to convince them that what allopathic medicine has to offer for auto-immune disorders is inadequate at best. Okay, I'll get down off my soap box now.
Bottom line: We will continue to pray for Micah's healing and follow both our God-given parental intuition and God-given guidance. He hasn't steered us wrong yet.
Predictably, the GI doc wasn't thrilled that we're taking Micah to my doctor, but that doesn't deter us. We're used to that reaction from physicians. I wish I had a nickel for every time a medical professional snubbed his (or her) nose at the one protocol that has actually helped me feel better and function well, not to mention brought my liver panel results completely within the normal ranges for the first time in almost 20 years. You would think my experience alone would be enough to convince them that what allopathic medicine has to offer for auto-immune disorders is inadequate at best. Okay, I'll get down off my soap box now.
Bottom line: We will continue to pray for Micah's healing and follow both our God-given parental intuition and God-given guidance. He hasn't steered us wrong yet.
Liver Doc Today
Micah's appointment with the pediatric gastroenterologist from Kansas City is this afternoon. Thankfully, this doc holds a clinic here once a month, so we don't have to add travel time and expense to this already stressful situation.
I need to fill out a mountain of paperwork and get my attitude straight before 2:30. I can't help but dread the appointment for many reasons, but one of the main reasons is that his appointment is in the same office where my former liver doctor practices. The place where I got a virtual death sentence every month, then every three months, for almost two years. I left every single appointment with a tear-streaked face and a broken heart.
I don't want to transmit those emotions to my son, but I doubt my own ability to be that strong. Thank goodness I don't have to be strong. God told Paul in 2 Corinthians 12: "My grace is sufficient for you, my power is made perfect in your weakness," to which Paul replied, "That is why, for Christ's sake, I delight in weaknesses..in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
Honestly, I don't yet "delight" in these trials; don't know if I ever will. But God has shown His strength in my weakness innumerable times, and that daily dose of grace is the only way I make it through some days, like today. Amazing grace, indeed.
I need to fill out a mountain of paperwork and get my attitude straight before 2:30. I can't help but dread the appointment for many reasons, but one of the main reasons is that his appointment is in the same office where my former liver doctor practices. The place where I got a virtual death sentence every month, then every three months, for almost two years. I left every single appointment with a tear-streaked face and a broken heart.
I don't want to transmit those emotions to my son, but I doubt my own ability to be that strong. Thank goodness I don't have to be strong. God told Paul in 2 Corinthians 12: "My grace is sufficient for you, my power is made perfect in your weakness," to which Paul replied, "That is why, for Christ's sake, I delight in weaknesses..in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
Honestly, I don't yet "delight" in these trials; don't know if I ever will. But God has shown His strength in my weakness innumerable times, and that daily dose of grace is the only way I make it through some days, like today. Amazing grace, indeed.
Sunday, February 1, 2009
Divine Companionship
We did stay at the bed and breakfast last night, and I'm so glad we did. We watched K-State beat Texas in overtime, then we ate incredible Indian food at a charming restaurant we've been driving by for ten years. The hot, healthful breakfast this morning perfected the weekend.
As I was re-reading The Autobiography of Martin Luther King, Jr. in a bubble bath last night, my eyes scanned a paragraph that reached off the page and grabbed my heart. So much has been written about this brilliant, humble, loving, strong servant of God that I could never add anything of substance. I won't try. And, it would be beyond arrogant and deceitful to compare anything I've ever experienced to the abuse, hatred and suffering he and his family endured in his unending quest for justice for all God's children. But I think anyone who has walked out their faith through life's hardships can relate to these statements by Dr. King.
"If I demonstrated unusual calm during (these trials), it was certainly not due to any extraordinary powers that I possess. Rather, it was due to the power of God working through me. Throughout this struggle.. I have constantly asked God to remove all bitterness from my heart and to give me the strength and courage to face any disaster that came my way. This constant prayer life and feeling of dependence on God have given me the feeling that I have divine companionship in the struggle. I know no other way to explain it. It is the fact that in the midst of external tension, God can give an inner peace."
Yes, He can, He will, and He has. For that, I'm eternally grateful.
As I was re-reading The Autobiography of Martin Luther King, Jr. in a bubble bath last night, my eyes scanned a paragraph that reached off the page and grabbed my heart. So much has been written about this brilliant, humble, loving, strong servant of God that I could never add anything of substance. I won't try. And, it would be beyond arrogant and deceitful to compare anything I've ever experienced to the abuse, hatred and suffering he and his family endured in his unending quest for justice for all God's children. But I think anyone who has walked out their faith through life's hardships can relate to these statements by Dr. King.
"If I demonstrated unusual calm during (these trials), it was certainly not due to any extraordinary powers that I possess. Rather, it was due to the power of God working through me. Throughout this struggle.. I have constantly asked God to remove all bitterness from my heart and to give me the strength and courage to face any disaster that came my way. This constant prayer life and feeling of dependence on God have given me the feeling that I have divine companionship in the struggle. I know no other way to explain it. It is the fact that in the midst of external tension, God can give an inner peace."
Yes, He can, He will, and He has. For that, I'm eternally grateful.
Friday, January 30, 2009
Walking Pneumonia
Another first today: Micah's first day at school since he's started the meds. I'm happy to report he took everything on schedule; what a relief. Maybe we can make this work after all.
When I picked him up this afternoon, I could tell he didn't feel well. His little face was flushed and feverish, and his breathing was labored. Steve took him to Urgent Care and, one hour and one chest x-ray later, he was diagnosed with walking pneumonia and given a prescription for Zithromax. We gave him a dose before bed, so hopefully his lungs, at least, are on the mend. What is happening? He had been home all week, thanks to the winter weather, and he seemed FINE. How am I missing all of these problems? Has my mother's intuition gone completely dormant? I feel like I'm failing him when I don't pick up on the cues his body is trying to send.
A month ago, I made a reservation for tomorrow night at our favorite bed & breakfast, to celebrate the 16th anniversary of the day Steve and I met. A friend from church agreed to watch the kids overnight and, considering the stress of the past week, the timing seemed perfect. Now I'm not so sure. The doctor said Micah will be "minimally contagious" for the next 24 hours. The B&B is only 15 minutes from our house so I think, if our friend is willing to risk catching pneumonia, we'll keep our plans. It's all for the cause: sanity.
When I picked him up this afternoon, I could tell he didn't feel well. His little face was flushed and feverish, and his breathing was labored. Steve took him to Urgent Care and, one hour and one chest x-ray later, he was diagnosed with walking pneumonia and given a prescription for Zithromax. We gave him a dose before bed, so hopefully his lungs, at least, are on the mend. What is happening? He had been home all week, thanks to the winter weather, and he seemed FINE. How am I missing all of these problems? Has my mother's intuition gone completely dormant? I feel like I'm failing him when I don't pick up on the cues his body is trying to send.
A month ago, I made a reservation for tomorrow night at our favorite bed & breakfast, to celebrate the 16th anniversary of the day Steve and I met. A friend from church agreed to watch the kids overnight and, considering the stress of the past week, the timing seemed perfect. Now I'm not so sure. The doctor said Micah will be "minimally contagious" for the next 24 hours. The B&B is only 15 minutes from our house so I think, if our friend is willing to risk catching pneumonia, we'll keep our plans. It's all for the cause: sanity.
Thursday, January 29, 2009
Emerging From the Fog
Micah threw an all-out fit today about taking his meds. He took them without complaining before breakfast; after lunch, however, was a different story. When I told him it was time to take them again, he glared at me and said, "NO!". "You need to. It will only take a couple of minutes," I tried to reassure him. But he still refused, clamping his mouth shut tight and pursing his little lips. I had to threaten him with the ultimate punishment, a nap, before he finally agreed to cooperate.
I'm wondering if my passivity the past few days is bringing out the worst in him. He needs to know someone is in charge, and I haven't exactly given him that impression. I wish he was old enough to understand that the benefits of taking the meds will outweigh the yucky taste and time out of his routine. Maybe it's time for a reward chart...
I slowly emerged from the fog today, starting with cleaning the house. The girls helped me vacuum, dust and clean the bathrooms. Everything smelled so clean when we finished, and I felt a sense of accomplishment. Maybe I really felt a sense of control, no matter how short lived, over these circumstances. I might not have control, but I do have clean toilets and, at this point, I'll take whatever I can get.
I'm wondering if my passivity the past few days is bringing out the worst in him. He needs to know someone is in charge, and I haven't exactly given him that impression. I wish he was old enough to understand that the benefits of taking the meds will outweigh the yucky taste and time out of his routine. Maybe it's time for a reward chart...
I slowly emerged from the fog today, starting with cleaning the house. The girls helped me vacuum, dust and clean the bathrooms. Everything smelled so clean when we finished, and I felt a sense of accomplishment. Maybe I really felt a sense of control, no matter how short lived, over these circumstances. I might not have control, but I do have clean toilets and, at this point, I'll take whatever I can get.
Wednesday, January 28, 2009
The Many Faces of Grief
Today I forced myself to think about the seemingly arbitrary ways sorrow shows itself. I have worn these clothes for three days in a row. I haven't regularly taken my meds, eaten healthy or exercised for nearly a week. Steve, on the other hand, is active and involved in work, errands and house projects, distracted in a strangely productive way. Mackenzie, naturally reserved and introspective, spends a lot of time in her room reading and listening to music. She treats her brother sweetly and helps willingly with household chores, but she chokes up occasionally and sleeps fitfully. Maddie has apparently chosen to cope by clashing with Micah at every opportunity. Usually laughing and lively, she has become bossy and sullen. I can tell she doesn't know how to process her hurt or how to help her baby brother.
Micah has opted for defiance. He tortures Maddie endlessly and resists every instruction we give him with a fixed gaze and a firm, "NO!". Sigh. We're trying to give him, and our daughters, leeway to adjust and grieve in their own ways without having to call in Super Nanny. As much as we want our home to be a peaceful place of refuge, that can't happen if our standards slip away. I'm no psychologist but I think maintaining our boundaries is imperative, for the kids' sakes and ours. We can't let our compassion for Micah outweigh our desire for him to treat others, including his parents, with respect. I pray we will find the balance in time.
Micah bundled up and bounded outside to play in the snow this afternoon. He chased the dog (He claimed she was playing with him.), made snow angels face first and fashioned a snow fort with Maddie. I watched from the window, smiling at his innocence, subtly severed just six days ago.
I only gave him his meds twice today. Guilt City.
Micah has opted for defiance. He tortures Maddie endlessly and resists every instruction we give him with a fixed gaze and a firm, "NO!". Sigh. We're trying to give him, and our daughters, leeway to adjust and grieve in their own ways without having to call in Super Nanny. As much as we want our home to be a peaceful place of refuge, that can't happen if our standards slip away. I'm no psychologist but I think maintaining our boundaries is imperative, for the kids' sakes and ours. We can't let our compassion for Micah outweigh our desire for him to treat others, including his parents, with respect. I pray we will find the balance in time.
Micah bundled up and bounded outside to play in the snow this afternoon. He chased the dog (He claimed she was playing with him.), made snow angels face first and fashioned a snow fort with Maddie. I watched from the window, smiling at his innocence, subtly severed just six days ago.
I only gave him his meds twice today. Guilt City.
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