Here's the long version of last week in more detail....Got to Philly Sunday, good travel, great weather. Unfortunately, we didn't get in Ronald Mcdonald House, so we stayed in the city. Got to do some sightseeing....my flip flop broke and I walked 10 blocks barefoot until we found a store to by some $5 flip flops...think they are my favorite shoes now :)
Monday came and we still did not know if we would see Dr. Bonnemann, but I felt like God was going to work it out. I called first thing and left a message. Friday I had been emailing anyone I knew that could have a connection to him. I even emailed Dr. Bonnemann himself, we have corresponded some already and he said he would be at CHOP and hoped to meet with us. So, I gave him my cell number (probably not the right etiquette, but I couldn't forsee being in the same place and not getting a chance for him to see MG).
We walked to Starbucks and neurology called. The receptionist said we could see Dr. B any time. So we scheduled for 2:30 that afternoon after our other appointments would be finished, or so we thought. When I sat back down to eat, I told Lee, "we are in to see Dr. Bonnemann." Then MG looked at me and said "we shouldpray ." Not kidding....so we did.
Off to CHOP for first appointment with anesthesia-it lasted almost two hours. Mainly because MG had started coughing and had been the night before. So the actual anesthesiologist came to check her out. He thought her lungs sounds "hyperactive" and albuterol treatments before surgery would be a good idea. Well, guess who left the albuterolinhaler and chamber at home...me.So, I called and emailed two doctors back home and got those called into Walgreens. We'd just run by and pick it up later that day (well, it turned out to be after 6:00 before we left the hospital and two different Walgreens later to get it all filled). And the anesthesiologist basically said he thought she would be ok, but it was possible the surgery could make her more sick and she could possibly end up in the ICU with pneumonia on the ventilator. I love it when they are so honest.
But as you know, God kept her safe...I was so fearful...and she went through surgery beautifully and took her time to recover on some oxygen. Dr. Campbell only expanded the rods 1 cm each, she can't handle much more than that with her history of broken ribs. So, she is recovering really well. We are so thankful!
After that appt on Monday, we headed to see Dr. Campbell at 1:30 and he was very backed up with appointments (meanwhile, MG is done...she is worn out from exams and bloodwork). So around 2:15 I run upstairs to neurology to tell them we may be late and they say you are the only patient Dr. Bonnemann is seeing today and he has to leave at 3:30 to catch the train. What?? the only patient.....I said, "I will be right back with her." So, I run back downstairs and tell Lee and we tell ortho what's going on and they were understanding and Dr. C would just have to wait :). So off to meet the famous doctor :) Apparently he is selective about who he sees, not because he is arrogant or anything like that, but because he is at the NIH now and is very involved in research of very rare, difficult to diagnosis muscle diseases. And Mary Graham fits into that category for sure. So she was "chosen." Not sure if Lee and I felt good or worse about that. But being one his patients will help her so much because he is on the cutting edge of everything to do with neuromuscular diseases, from treatments, to clinical trials and running tests that other doctors may not be able to do.He was super nice and thorough...he asked about her history and knew some of it already. Then he did an ultrasound of her legs, arms and back. To summarize, he believes she has a congenital myopathy, which crosses over with dystrophies also. But some are just now in the last year being able to be studied more clearly. He said it was "perplexing" that she is so weak through her torso and back, but her legs and arms are stronger. Also, many of these diseases can come with facial deformities and she doesn't have this. These myopathies can involve respiratory and cardiac issues. He ordered a huge DNA test that will take 5-6 months to get back (this test can't normally be done at hospitals). And an echocardiogram. We had this done at CHOP on Wednesday and thankfully it was normal. We will continue to see cardiologist to monitor her heart. Also, the respiratory function can decline over time, but that is why we see pulmonology here and at CHOP constantly. The stablity or progressiveness of the disease is not very predictable, especially since some are just now being discovered and every child is different.
So, more waiting. Lee and I both have said that at this point it doesn't really change anything once we know what her specific neuromuscular disease is, but it can give us more insight to best helping her as she gets older. We have learned over the last few years that nothing is truly definitive with neuromuscular diseases and that is where we just put our trust in God alone. And God has placed amazing doctors in our path, and we are so confident that she is getting the best possibly treatment and we are so thankful for that.The most important thing for us is that she is doing very well right now, her veptrs are holding and keeping her chest wall stable and she is not showing any signs of respiratory distress. She is getting stronger and these things are nothing short of miracles and the power of prayer.
God always uses these times to show more of himself to me and lead me to these verses below.
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from your majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”
Daniel 3
This was the response of Shadrach, Meshach and Abendigo in Daniel who worshipped God, and were about to be thrown into the fiery furnance because of that. Their trust and belief in the Lord blows me away. And after reading this blog (and she puts it so much more beautifully than I can) God showed me this in this last week. How many times am I begging God to answer my prayers....in big and small things. From asking God to protect my children, provide for our family, blessing us.....to asking God to get MG through one more surgery. And I wonder how many times at the end of these prayers do I say, "But even if you do not Lord." Do I still give him thanks? Do I still trust? Do I still believe all He does is good?This is hard. Very hard....I want things to go my way. And this is where Christ comes in....he loves us so much.....He loved us to death on the cross.
Ann Voscamp puts it like this..."Faith is this unwavering trust in the heart of God in the hurt of here. Unwavering trust all the time though I don’t understand all the time....That which we fear might happen to us — might be the thing to produce deep faith in us. Why be afraid of anything — when He’s using everything?"
So, I don't always understand....but I have seen God in the details of this journey with MG so vividly and in other circumstances in my life, he has answered many prayers in miraculous ways and some with a "maybe not, not today." And I have experienced fear that it won't turn out how I want. I will continue to cling to the promises of Him, of His love and hope, not in my circumstances.
This song, Gratitude by Nicole Nordeman, says of prayers
Maybe not, not today
And if that's the case...
We'll give thanks to you, with gratitude
For lessons learned to trust
It takes a choice every second of the day to trust that God is working for the good for MG, for Loftin and Lucy, and for each of us, even in the smallest things....handing it all over to Him. We will continue to pray, to make requests, to beg for healing and for the hurt to go away....and God hears the prayers of his people. But I do want His will, to give thanks in all circumstances, to believe, to trust, to say, "But even if He doesn't." And when he doesn't.....give thanks and know He still loves us and this is His best. We are blessed beyond what we even understand.
Thank you for being a part of Mary Graham's journey andpraying for her.
Monday came and we still did not know if we would see Dr. Bonnemann, but I felt like God was going to work it out. I called first thing and left a message. Friday I had been emailing anyone I knew that could have a connection to him. I even emailed Dr. Bonnemann himself, we have corresponded some already and he said he would be at CHOP and hoped to meet with us. So, I gave him my cell number (probably not the right etiquette, but I couldn't forsee being in the same place and not getting a chance for him to see MG).
We walked to Starbucks and neurology called. The receptionist said we could see Dr. B any time. So we scheduled for 2:30 that afternoon after our other appointments would be finished, or so we thought. When I sat back down to eat, I told Lee, "we are in to see Dr. Bonnemann." Then MG looked at me and said "we should
Off to CHOP for first appointment with anesthesia-it lasted almost two hours. Mainly because MG had started coughing and had been the night before. So the actual anesthesiologist came to check her out. He thought her lungs sounds "hyperactive" and albuterol treatments before surgery would be a good idea. Well, guess who left the albuterol
But as you know, God kept her safe...I was so fearful...and she went through surgery beautifully and took her time to recover on some oxygen. Dr. Campbell only expanded the rods 1 cm each, she can't handle much more than that with her history of broken ribs. So, she is recovering really well. We are so thankful!
After that appt on Monday, we headed to see Dr. Campbell at 1:30 and he was very backed up with appointments (meanwhile, MG is done...she is worn out from exams and bloodwork). So around 2:15 I run upstairs to neurology to tell them we may be late and they say you are the only patient Dr. Bonnemann is seeing today and he has to leave at 3:30 to catch the train. What?? the only patient.....I said, "I will be right back with her." So, I run back downstairs and tell Lee and we tell ortho what's going on and they were understanding and Dr. C would just have to wait :). So off to meet the famous doctor :) Apparently he is selective about who he sees, not because he is arrogant or anything like that, but because he is at the NIH now and is very involved in research of very rare, difficult to diagnosis muscle diseases. And Mary Graham fits into that category for sure. So she was "chosen." Not sure if Lee and I felt good or worse about that. But being one his patients will help her so much because he is on the cutting edge of everything to do with neuromuscular diseases, from treatments, to clinical trials and running tests that other doctors may not be able to do.He was super nice and thorough...he asked about her history and knew some of it already. Then he did an ultrasound of her legs, arms and back. To summarize, he believes she has a congenital myopathy, which crosses over with dystrophies also. But some are just now in the last year being able to be studied more clearly. He said it was "perplexing" that she is so weak through her torso and back, but her legs and arms are stronger. Also, many of these diseases can come with facial deformities and she doesn't have this. These myopathies can involve respiratory and cardiac issues. He ordered a huge DNA test that will take 5-6 months to get back (this test can't normally be done at hospitals). And an echocardiogram. We had this done at CHOP on Wednesday and thankfully it was normal. We will continue to see cardiologist to monitor her heart. Also, the respiratory function can decline over time, but that is why we see pulmonology here and at CHOP constantly. The stablity or progressiveness of the disease is not very predictable, especially since some are just now being discovered and every child is different.
So, more waiting. Lee and I both have said that at this point it doesn't really change anything once we know what her specific neuromuscular disease is, but it can give us more insight to best helping her as she gets older. We have learned over the last few years that nothing is truly definitive with neuromuscular diseases and that is where we just put our trust in God alone. And God has placed amazing doctors in our path, and we are so confident that she is getting the best possibly treatment and we are so thankful for that.The most important thing for us is that she is doing very well right now, her veptrs are holding and keeping her chest wall stable and she is not showing any signs of respiratory distress. She is getting stronger and these things are nothing short of miracles and the power of prayer.
God always uses these times to show more of himself to me and lead me to these verses below.
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from your majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”
Daniel 3
This was the response of Shadrach, Meshach and Abendigo in Daniel who worshipped God, and were about to be thrown into the fiery furnance because of that. Their trust and belief in the Lord blows me away. And after reading this blog (and she puts it so much more beautifully than I can) God showed me this in this last week. How many times am I begging God to answer my prayers....in big and small things. From asking God to protect my children, provide for our family, blessing us.....to asking God to get MG through one more surgery. And I wonder how many times at the end of these prayers do I say, "But even if you do not Lord." Do I still give him thanks? Do I still trust? Do I still believe all He does is good?This is hard. Very hard....I want things to go my way. And this is where Christ comes in....he loves us so much.....He loved us to death on the cross.
Ann Voscamp puts it like this..."Faith is this unwavering trust in the heart of God in the hurt of here. Unwavering trust all the time though I don’t understand all the time....That which we fear might happen to us — might be the thing to produce deep faith in us. Why be afraid of anything — when He’s using everything?"
So, I don't always understand....but I have seen God in the details of this journey with MG so vividly and in other circumstances in my life, he has answered many prayers in miraculous ways and some with a "maybe not, not today." And I have experienced fear that it won't turn out how I want. I will continue to cling to the promises of Him, of His love and hope, not in my circumstances.
This song, Gratitude by Nicole Nordeman, says of prayers
Maybe not, not today
And if that's the case...
We'll give thanks to you, with gratitude
For lessons learned to trust
It takes a choice every second of the day to trust that God is working for the good for MG, for Loftin and Lucy, and for each of us, even in the smallest things....handing it all over to Him. We will continue to pray, to make requests, to beg for healing and for the hurt to go away....and God hears the prayers of his people. But I do want His will, to give thanks in all circumstances, to believe, to trust, to say, "But even if He doesn't." And when he doesn't.....give thanks and know He still loves us and this is His best. We are blessed beyond what we even understand.
Thank you for being a part of Mary Graham's journey and
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