Today was a long day. This week has been a long week. Bren didnt move off the couch but to pee until it was time for his MRI. The hospital called yesterday and asked what day/time was good for us. I told the nurse ASAP, we would drop it all and make it happen. So today it was. He was able to stay still for a whole hour and 15 minutes. He was fabulous and God SO answered prayers! He took his favorite stuffed turtle with him. Its a sweet soft turtle that his little brother bought him with his own money, which is why Brennan loves is so very much. AndTHAT warms my heart.
We don't have results yet nor will we until monday or tuesday. I am jsut prayign for clear images, and a plan to get my sweet son out of pain! He has not gone to school all week except for Wednesday, and the school called me within the hour to come and get him. Although he was miserable today, and rated his pain at a 7 he insisted on walking through the halls of the childrens hospital. I offerred a wagon, and a wheel chair and he refused. By the time we were leaving he was tripping because his left leg was going out from under him. I am amazed at how he keeps on going, at how he wants to try, to be like all the other kids in the neighborhood, and his brothers. We have googled athletes with arthritis and found 2 olympians. His face lit up. I saw a spark of hope that one day he too could be running, and swimming, and competing, and that this isnt the end. And I wonder- how will God use this? How will he take my sweet son, and mold his heart, and use this disease for his glory? I pray his heart stays soft, and doesnt becoem embittered, or beaten down.
In the midst of all of this I realize this has changed, is changing our family. My oldest is jealous at all the school Bren is missing, and the new bike that he got. My youngest wants my time and energy that has been shifted to another. My husband is trying to stay strong while I am weak in this. I wonder what effect this will have on outings, vacations, etc. We will need to make sure if Brennan is not in remission that our family time doesn't make him feel left out. Or that it doesn't make the other kids feel as if their desires are not as important. Hiking is something we love to do...... will Brennan be able to hike this year at all? What about a day walking the amusement park?
And in all this I am reminded that Gods mercies are in fact new every morning. And this disease seems to be a moment by moment, day by day and we will in fact need new mercies every morning. So lets see what tomorrow holds, because we have soccer games, and my son couldn't walk worth 2 cents today.
Saturday, May 14, 2011
Tuesday, May 10, 2011
F is for frustrating...
Frustrating. This disease is frustrating. Come to think of it What disease isn't? Brennans eye appointment went great. By Gods grace his eyes are clear. CLEAR. NO inflammation. We see the opthamologist in 8 weeks and then every 3 months after that for well... Im thinking eternity. Thankfully they are nice, the office is a pleasant environment, and they have Veggie tales on T.V. I think we can handle that every 3 months, right?
On another note, as we have hope naproxen would work for Brennan I can say he has only gotten worse since we started it. The day we saw the eye doc Brennan woke up and couldnt walk by himself. He was clutching furniture, falling down, and shaking. I immediately got him flat on the couch with a heating pad, could tell he had a low grade fever, and after a warm blanke and some love he fell back to sleep. By the time we left for teh appt. he was walking but badly. We shuffled throught he halls, and my heart ached as he tried to walk, and aske me if his Dr. K's office was in this building, too. He wanted to talk to Dr. K abotu his legs, and make sure that he knew his ankles were now hurting. I choked back tears and promised him I would call the nurse so Dr. K new he was feelign worse. We went to the store afterwards and he asked for a cart to sit in the back, with his legs straight, instead of a bench cart, becuase that hurts 'worser'. He actually stumbled and fell int eh parking lot. He said his legs just felt weak. His sweet little voice piped up and said, 'I jsut want to be normal again.'
'Normal?' I asked.
'Yeah, normal, like before i hurt. No one else has his. No on else in the family, or the neighborhood.'
I told him he wasn't the only one, I told him he was normal, but I knew he was frustrated. I toild him I loved him, and that we would try our best to get his legs to feel better. And all the while inside I was crying. I was inadequate. I was wondering HOW. How to fix this. How to make it better. HOW. And I knew I didn't have the answers. I still don't. I have love, I have hope, I have prayer. I don't have answers.
jeanette the nurse called back and said Dr. K had squeezed him in at 10 am the next day. His stiffness and instability lasted until about 3 in the afternoon. And then he was runnign in the yard. Wobbly, but running, He slept all night. He woke up stiff, but was bounding down the steps. I saw him stretch his legs out ont he coffee table and as I was fixing breakfast he was counting. I looked over to see him bending his knees to chest each leg, 10 times each, and switching sides adn repeating. And I was amazed.
Amazed that a 6 year old can perservere through pain that would knock many adults flat. Amazed at a sweet child who when asked 'what are you doing?' Responded with an 'Exercising!" as in, 'well mom, whats it look like, im makign these legs do what they need to do!'
And he we are, 13 hours later, and no closer to fixing my sons legs.
Dr. K ordered MRI's. He said the ankle swelling was 'minimal', and not in the major joint, therefore an injection was not possible. Minimal swelling certianly does not mean minimal pain. He said his legs muscles are very tight, and sent in PT.
We are now waiting for an MRI appointment. At that point we can look over the results and discuss steroid injections. And oral medications if the ankle is still swollen. I left with no more answers, the same medication regimen, that is obviously not working, and a child dissapointed that Dr. K did not fix it. He did order repeat labs, and some Muscle enzymes. He stated there are other diseases that also cause muscle inflammation that need to be ruled out. Brennan has now missed 33 days of school this year. and as I was angry and frustrated and listening to Dr. K talk, and tell me this is a long journey, and a puzzle that takes time, and that we still don't have a sub type, and that we needed to rule out other diseases, i was trying to remind myself of a verse my dear friend had sent me.
Lamentations 3;33
for he does not willingly afflict or grieve the children of men'.
As I pondered this, and thought of my son, and how my God loves him more than I do, i began to read more, and came across this
Lamentations 3:21-25
But this I call to mind and therefore I have hope. The steadfast love of the Lord never ceases, hismercies never come to an end; they are new every morning; great is yoru faithfulness. The Lord is my portion, says my soul, therefore I will hope in him. The Lord is good to those who wait in him.
and Numbers 23:19
God is not man, that he should lie, or a son of man, that he chould change his mind. Has he said, and will he not do it? Or has he spoken and will he not fulfill it?
And I know I can trust my Gods character. He has spoken. He has spoken that his mercies are new every mornign, and my sweet son, bounding down the steps lived that today. He gave Brennan the strength today to walk, to finish his PT exercises with daddy, and to even, though wobbly and sore after, to play a soccer game tonight. He felt normal today. when asked his pain level he said he felt 'good' and 'fine' today, but when shown the face chart, he pointed to a 5 on a scale of 1-10.
Gods mercy was new today.
And therefore I will hope in HIm.
On another note, as we have hope naproxen would work for Brennan I can say he has only gotten worse since we started it. The day we saw the eye doc Brennan woke up and couldnt walk by himself. He was clutching furniture, falling down, and shaking. I immediately got him flat on the couch with a heating pad, could tell he had a low grade fever, and after a warm blanke and some love he fell back to sleep. By the time we left for teh appt. he was walking but badly. We shuffled throught he halls, and my heart ached as he tried to walk, and aske me if his Dr. K's office was in this building, too. He wanted to talk to Dr. K abotu his legs, and make sure that he knew his ankles were now hurting. I choked back tears and promised him I would call the nurse so Dr. K new he was feelign worse. We went to the store afterwards and he asked for a cart to sit in the back, with his legs straight, instead of a bench cart, becuase that hurts 'worser'. He actually stumbled and fell int eh parking lot. He said his legs just felt weak. His sweet little voice piped up and said, 'I jsut want to be normal again.'
'Normal?' I asked.
'Yeah, normal, like before i hurt. No one else has his. No on else in the family, or the neighborhood.'
I told him he wasn't the only one, I told him he was normal, but I knew he was frustrated. I toild him I loved him, and that we would try our best to get his legs to feel better. And all the while inside I was crying. I was inadequate. I was wondering HOW. How to fix this. How to make it better. HOW. And I knew I didn't have the answers. I still don't. I have love, I have hope, I have prayer. I don't have answers.
jeanette the nurse called back and said Dr. K had squeezed him in at 10 am the next day. His stiffness and instability lasted until about 3 in the afternoon. And then he was runnign in the yard. Wobbly, but running, He slept all night. He woke up stiff, but was bounding down the steps. I saw him stretch his legs out ont he coffee table and as I was fixing breakfast he was counting. I looked over to see him bending his knees to chest each leg, 10 times each, and switching sides adn repeating. And I was amazed.
Amazed that a 6 year old can perservere through pain that would knock many adults flat. Amazed at a sweet child who when asked 'what are you doing?' Responded with an 'Exercising!" as in, 'well mom, whats it look like, im makign these legs do what they need to do!'
And he we are, 13 hours later, and no closer to fixing my sons legs.
Dr. K ordered MRI's. He said the ankle swelling was 'minimal', and not in the major joint, therefore an injection was not possible. Minimal swelling certianly does not mean minimal pain. He said his legs muscles are very tight, and sent in PT.
We are now waiting for an MRI appointment. At that point we can look over the results and discuss steroid injections. And oral medications if the ankle is still swollen. I left with no more answers, the same medication regimen, that is obviously not working, and a child dissapointed that Dr. K did not fix it. He did order repeat labs, and some Muscle enzymes. He stated there are other diseases that also cause muscle inflammation that need to be ruled out. Brennan has now missed 33 days of school this year. and as I was angry and frustrated and listening to Dr. K talk, and tell me this is a long journey, and a puzzle that takes time, and that we still don't have a sub type, and that we needed to rule out other diseases, i was trying to remind myself of a verse my dear friend had sent me.
Lamentations 3;33
for he does not willingly afflict or grieve the children of men'.
As I pondered this, and thought of my son, and how my God loves him more than I do, i began to read more, and came across this
Lamentations 3:21-25
But this I call to mind and therefore I have hope. The steadfast love of the Lord never ceases, hismercies never come to an end; they are new every morning; great is yoru faithfulness. The Lord is my portion, says my soul, therefore I will hope in him. The Lord is good to those who wait in him.
and Numbers 23:19
God is not man, that he should lie, or a son of man, that he chould change his mind. Has he said, and will he not do it? Or has he spoken and will he not fulfill it?
And I know I can trust my Gods character. He has spoken. He has spoken that his mercies are new every mornign, and my sweet son, bounding down the steps lived that today. He gave Brennan the strength today to walk, to finish his PT exercises with daddy, and to even, though wobbly and sore after, to play a soccer game tonight. He felt normal today. when asked his pain level he said he felt 'good' and 'fine' today, but when shown the face chart, he pointed to a 5 on a scale of 1-10.
Gods mercy was new today.
And therefore I will hope in HIm.
Friday, May 6, 2011
E is for eye dcotor
Im not quite sure where these alphabet titles are coming from, lol They just are. At the moment we are praising God because mysweet son can get into the eye doctor on MONDAY instead of June 10th. Hes complaining of burnign eyes when outside, and due to his positive ANA bloodwork is at higher risk for his arthritis affecting his eyes, so they squeezed him in quicker. The doctor is supposed to call me today so we can chat. I am realizing this disease is odd. No clear cut answers, lots of waiting, waiting and seeing. And Im not the best at being patient. Do you think God knew I needed a lesson in patience?
I am currently reading a great book titled 'Raisng Kids with arthritis'. It has me thinking about more and more as we go forward. I was hit last night with the phrase that this a chronic disease that can only be managed with medication, exercise, consistency. Im beginning to accept these things, but want my son to not be defined by this. I want him to push forward, to run still, though it hurts, to keep on being HIM, not going on to become IT.
Its been a rough week for him. A week of sore legs, and now ankles. Stiff nights and mornings, and a sweet little boy that I can tell is worried about this. wondering. Questioning. I pray his heart does not turn bitter and angry over this. I pray for healing, I pray for relief. I praise the one who has already answered so many prayers, in so many ways. And we wait. What drug will work? What does his body look like on the inside? What does his future look like? I dont know, but I know My God holds it in his hands.
I am currently reading a great book titled 'Raisng Kids with arthritis'. It has me thinking about more and more as we go forward. I was hit last night with the phrase that this a chronic disease that can only be managed with medication, exercise, consistency. Im beginning to accept these things, but want my son to not be defined by this. I want him to push forward, to run still, though it hurts, to keep on being HIM, not going on to become IT.
Its been a rough week for him. A week of sore legs, and now ankles. Stiff nights and mornings, and a sweet little boy that I can tell is worried about this. wondering. Questioning. I pray his heart does not turn bitter and angry over this. I pray for healing, I pray for relief. I praise the one who has already answered so many prayers, in so many ways. And we wait. What drug will work? What does his body look like on the inside? What does his future look like? I dont know, but I know My God holds it in his hands.
Monday, May 2, 2011
D is for...
Diagnosis day. April 28th, 2011. My son, 6, charming, wonderful, sweet, and practically perfect has juvenile arthritis. Thi blog has been home repairs, things Ive made, etc, etc. And all of those things seem well, trivial to me tonight as I sit and ponder life. It started in january. the 11th to be exact. He woke up like this. Well, it was worse- this is better than how he woke up.
He couldnt walk at first. He was like a sobbing wet noodle tryign to stand. I thought of tumors, and strokes as I dialed the phone and panicked. I obviously wasnt talkign clearly because the nurse, and my husband thought he had growing pains! After bloodwork and exams we were told he had viral arthritis. My husband, whose neck could be 2/3rds severed before he ever saw a doctor took one look at my video footage that night and was silent. For five full minutes. Then quietly he asked when he saw the specialist.
After a short lived break, like 7 days, from the symptoms they came roaring back, and we began to realize that viral arthritis never lasts more than 8 weeks. My sons ANA antibodies were positive, and it was time to see a rheumatologist.
It took 3 months to see our doctor. 3 months of me hoping it was something else. 3 months of me prayign it was someting else. 3 months of me watching him run around 1 day, then sob and shuffle and limp another.
I have prayed God would show my son perserverance. And as these 3 months have gone by, and Ive prayed for healing God has whispered to my heart- :why so quick to pray for perserverance, and then for the trial to be removed? My purpose will be perfected in yoru son. " I was reading abotu the man born blind from birth, who did not sin, but was blind that Gods glory might be revealed. matthew
The author asked- what was harder to accept? the condition, or that it was caused by one who could heal it?
As i read that I was shaken to my core. As Jerry Bridges says in Trusing God- it is far easier to obey God than it is to trust Him. The question I kept being asked was 'Do you trust me with your son?" Do YOU trust me, with your son?" Do you TRUST me with your son? Do you trust me with your SON?
And I have sat before God this week almost silent. I have sewed, and neglected housework to escape, I have driven to the mall, and neglected housework to escape. I have played board games with and snuggled a child who hurts, and is stiff, and is asking- Momma, will my legs ALWAYS hurt? Momma- is it wrong for me to think God is kind of mean to not fix my legs?
And I have tried to push away my thoughts crowding my mind with menial things. And I cannot. God loves me too much to allow it. Tonight as I sat to read with my sons our daily devotion I almost wept when I saw the title. Gods timing is perfect. The passage?
1 Peter 1:3-9
3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy,he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, toan inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.
and Phillipians 4:13
I can do all thrings through Christ who gives me strength.
And as I asked teh questions that corresponded with the story my son talked about his arthritis. His disease.
And we talked about how our life on earth is but a vapor compared to eternity in heaven. How God can heal Him, but God has a plan regardless. We talked abotu trust, and Gods glory beign revealed in our lives. And I just wanted to hold him, and take that weight from my 6 year old son. My son asking if this will affect his eyes as the doctor mentioned. My son who is too precious to me to see this. My son. MY SON.
How God must have ached as he watched Christ hang on that cross!
I know my God has plans. I look back and see the pain Christ went through was for GOOD. I want to see the future of my sons trial, and all I can do is trust. Do I trust Him with my son?
He couldnt walk at first. He was like a sobbing wet noodle tryign to stand. I thought of tumors, and strokes as I dialed the phone and panicked. I obviously wasnt talkign clearly because the nurse, and my husband thought he had growing pains! After bloodwork and exams we were told he had viral arthritis. My husband, whose neck could be 2/3rds severed before he ever saw a doctor took one look at my video footage that night and was silent. For five full minutes. Then quietly he asked when he saw the specialist.
After a short lived break, like 7 days, from the symptoms they came roaring back, and we began to realize that viral arthritis never lasts more than 8 weeks. My sons ANA antibodies were positive, and it was time to see a rheumatologist.
It took 3 months to see our doctor. 3 months of me hoping it was something else. 3 months of me prayign it was someting else. 3 months of me watching him run around 1 day, then sob and shuffle and limp another.
I have prayed God would show my son perserverance. And as these 3 months have gone by, and Ive prayed for healing God has whispered to my heart- :why so quick to pray for perserverance, and then for the trial to be removed? My purpose will be perfected in yoru son. " I was reading abotu the man born blind from birth, who did not sin, but was blind that Gods glory might be revealed. matthew
The author asked- what was harder to accept? the condition, or that it was caused by one who could heal it?
As i read that I was shaken to my core. As Jerry Bridges says in Trusing God- it is far easier to obey God than it is to trust Him. The question I kept being asked was 'Do you trust me with your son?" Do YOU trust me, with your son?" Do you TRUST me with your son? Do you trust me with your SON?
And I have sat before God this week almost silent. I have sewed, and neglected housework to escape, I have driven to the mall, and neglected housework to escape. I have played board games with and snuggled a child who hurts, and is stiff, and is asking- Momma, will my legs ALWAYS hurt? Momma- is it wrong for me to think God is kind of mean to not fix my legs?
And I have tried to push away my thoughts crowding my mind with menial things. And I cannot. God loves me too much to allow it. Tonight as I sat to read with my sons our daily devotion I almost wept when I saw the title. Gods timing is perfect. The passage?
1 Peter 1:3-9
3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy,he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, toan inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.
and Phillipians 4:13
I can do all thrings through Christ who gives me strength.
And as I asked teh questions that corresponded with the story my son talked about his arthritis. His disease.
And we talked about how our life on earth is but a vapor compared to eternity in heaven. How God can heal Him, but God has a plan regardless. We talked abotu trust, and Gods glory beign revealed in our lives. And I just wanted to hold him, and take that weight from my 6 year old son. My son asking if this will affect his eyes as the doctor mentioned. My son who is too precious to me to see this. My son. MY SON.
How God must have ached as he watched Christ hang on that cross!
I know my God has plans. I look back and see the pain Christ went through was for GOOD. I want to see the future of my sons trial, and all I can do is trust. Do I trust Him with my son?
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