Mary Graham will have her cast procedure on September 22nd. Please pray for a smooth procedure, the anesthesia and for it to be successful in stopping the progression of her scoliosis or even improving it. We will spend one night at Children's and learn how to care for her with the cast. This will be a new adjustment for all of us, I am anxious. Please pray that she adapts quickly.
The last few weeks have had their ups and down, at times full of frustration in communicating with doctors. This is a learning process, as we try to be the best advocates for Mary Graham. It can be overwelming and we often feel uncertain about our decisions. And I find myself trying to carry this load again. Then today, both my devotion books were the same story of Abraham's amazing trust in the Lord with his son, Issac. In fact, the first words of the book "Jesus Calling" say, "Entrust your loved ones to Me; release them into My protective care. They are much safer with Me than in your clinging hands." I want to cling. But she is best in His hands. There is nothing more difficult than to fully trust God with your children. God says in Hebrews that "Abraham obeyed and went, even though he did not know where he was going." So even in the confusion and unknown, we must move forward and trust. Please pray for greater trust in Him alone.
Today in the car, I heard my 5 year old, Loftin, say from way back in the van, "Mommy, Mary Graham is smiling at the sun." Immediately, my eyes welled with tears because I suddenly pictured her smiling at the Son, at Jesus. It was such a sweet moment that God allowed me to see His goodness and know that He has her in his hands and how thankful I am......He is clinging and she is smiling.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever. Amen." Ephesians 3:20-21
We are so grateful for your prayers and we know He can move in mighty ways.
Thursday, August 25, 2011
Wednesday, August 10, 2011
Press On
"Press on" were the first words that came to mind after I hung up the phone with our genetics doctor today. She took her time to talk to me and try and answer as many questions as she could. She had received the urine results and most of the urine analysis seemed normal, except for a few "bands" (whatever that means) that were abnormal, which could be caused by several different factors. But we are very thankful for some of it being normal. However, she has ordered the urine test again....yes, again. It took us many attempts to get this the first time until they finally got it during her MRI, so we will probably wait until her cast is put on and she is under anesthesia to have it drawn again. Furthermore, our genetics doctor wants to have a chromosome panel test to look more closely at MG's genetic makeup and these results can take over a month to come back.
We are still awaiting the date set for Mary Graham's cast, which we should know next week. Our orthopedist wants to review all the results, MRI, etc. and then move forward with the cast.
So, we will just press on and wait some more and pray for good results. Please pray for the urine test again, the chromosome tests, the cast, and very importantly, for MG's growth. She is very small and although she has grown, she is hovering around her same weight for a while now.
Honestly, although days like today can make me very weary, I am hopeful and calm. I have come to accept the waiting.....I can rest during these times, and it is refreshing to just go about life as normal. But it's speaking with the doctors that brings it all back to reality again. The story of when Jesus calms the storm has been on my mind this last week as I have been listening to that song, Be Still my Soul. In fact, I was looking it up last night and it didn't take me long to find it, there was a random piece of a sticky note right on the story in my bible, like it was already marked for me. I have no idea where it came from. However, I do not believe this was random, God is in the details. God's power in this story, the waves and winds obeyed....He calmed the storm by just speaking, just His voice. Every line in this song is amazing, but the second verse has struck me more lately...."be still my soul, the wind and waves still know, still know. His voice who ruled them while He dwelt below."
His power remains. His faithfulness remains. His voice remains. And I must remind myself of these truths daily when the doubts come. There is much to be thankful for....please continue to pray for Mary Graham's healing. We are so grateful for your prayers and encouragment.
Here is a youtube video of Be Still My Soul with the lyrics:
http://www.youtube.com/watch?v=c9zHn4QSH-8
We are still awaiting the date set for Mary Graham's cast, which we should know next week. Our orthopedist wants to review all the results, MRI, etc. and then move forward with the cast.
So, we will just press on and wait some more and pray for good results. Please pray for the urine test again, the chromosome tests, the cast, and very importantly, for MG's growth. She is very small and although she has grown, she is hovering around her same weight for a while now.
Honestly, although days like today can make me very weary, I am hopeful and calm. I have come to accept the waiting.....I can rest during these times, and it is refreshing to just go about life as normal. But it's speaking with the doctors that brings it all back to reality again. The story of when Jesus calms the storm has been on my mind this last week as I have been listening to that song, Be Still my Soul. In fact, I was looking it up last night and it didn't take me long to find it, there was a random piece of a sticky note right on the story in my bible, like it was already marked for me. I have no idea where it came from. However, I do not believe this was random, God is in the details. God's power in this story, the waves and winds obeyed....He calmed the storm by just speaking, just His voice. Every line in this song is amazing, but the second verse has struck me more lately...."be still my soul, the wind and waves still know, still know. His voice who ruled them while He dwelt below."
His power remains. His faithfulness remains. His voice remains. And I must remind myself of these truths daily when the doubts come. There is much to be thankful for....please continue to pray for Mary Graham's healing. We are so grateful for your prayers and encouragment.
Here is a youtube video of Be Still My Soul with the lyrics:
http://www.youtube.com/watch?v=c9zHn4QSH-8
Sunday, August 7, 2011
A pretty cool story
Yesterday I took Mary Graham to the pulmonologist in order to check on a spot found on her left lung during the MRI. My pediatrician had not been too alarmed by this and said since she wasn't showing any signs of congestion, it was probably nothing. Nonetheless, he wanted to have it checked since babies with scoliosis can have respiratory problems. We prayed that the spot would be gone, and it was....praise God! MG is going to continue to see the pulmonologist, which I don't mind, because her doctor happens to be a good friend from sunday school, Grace. Grace is wonderful and it is always nice to be seen by someone I know amidst all these doctor appointments.
Here is the cool part....
We were called to the nurse triage area first to have Mary Graham's weight, height, bp, etc. done by a young, sweet nurse. As I'm sitting there with MG in my lap, another older, "grandmotherish" nurse was on her computer next to us. She turned around and was talking to me and MG and asking if she was always so happy. The nurses were both saying that most babies are crying when they have all that done and I told them that Mary Graham is a sweet, content baby most of the time. I was just about to tell them about her health issues, but got distracted as the nurse was trying to take her BP. Then, quietly I heard the older nurse whispering and I looked over to see that she was looking right at Mary Graham....she had lifted both hands towards MG and was saying "Jesus, Jesus...thank you Jesus"...she whispered some other things too that I couldn't hear..... she was praying for her. It was then that I told her that Mary Graham had been through a lot in her little life, about the scoliosis, her hips and genetic testing we are awaiting. Right then another patient came in and the older nurse began helping him. But a few minutes later before we were done, I caught her eye again and she looked me in the eye and whispered to me "it's going to be okay, she's going to be okay." My eyes welled up....I wanted to run to her, burst into tears and say "do you really think she will be okay?" but I just mouthed "thank you" and went on to our room. I never saw her again after that.
So, take that for what it's worth, but I am certain that God placed me there purposely at just the right time. Not that I think that nurse has some spiritual insight or anything crazy like that....to me it was just a sweet moment of God's sovereignty over all of our lives, step by step, moment by moment. Maybe that nurse does that with all the patients that come through, I don't know....but I do know that her prayers were heard and I praise God for moments like these in the midst of this uncertain journey.
Here is the cool part....
We were called to the nurse triage area first to have Mary Graham's weight, height, bp, etc. done by a young, sweet nurse. As I'm sitting there with MG in my lap, another older, "grandmotherish" nurse was on her computer next to us. She turned around and was talking to me and MG and asking if she was always so happy. The nurses were both saying that most babies are crying when they have all that done and I told them that Mary Graham is a sweet, content baby most of the time. I was just about to tell them about her health issues, but got distracted as the nurse was trying to take her BP. Then, quietly I heard the older nurse whispering and I looked over to see that she was looking right at Mary Graham....she had lifted both hands towards MG and was saying "Jesus, Jesus...thank you Jesus"...she whispered some other things too that I couldn't hear..... she was praying for her. It was then that I told her that Mary Graham had been through a lot in her little life, about the scoliosis, her hips and genetic testing we are awaiting. Right then another patient came in and the older nurse began helping him. But a few minutes later before we were done, I caught her eye again and she looked me in the eye and whispered to me "it's going to be okay, she's going to be okay." My eyes welled up....I wanted to run to her, burst into tears and say "do you really think she will be okay?" but I just mouthed "thank you" and went on to our room. I never saw her again after that.
So, take that for what it's worth, but I am certain that God placed me there purposely at just the right time. Not that I think that nurse has some spiritual insight or anything crazy like that....to me it was just a sweet moment of God's sovereignty over all of our lives, step by step, moment by moment. Maybe that nurse does that with all the patients that come through, I don't know....but I do know that her prayers were heard and I praise God for moments like these in the midst of this uncertain journey.
Thursday, July 28, 2011
More stuff....more prayer
We met with another orthopedist this week and have some specific prayer requests as the next few months unfold....
Mary Graham's scoliosis is not your typical run-of-the-mill scoliosis that is generally seen in babies of this age in that her back has a significant amount of rigidity - which will make treatment challenging (and probably quite lengthy). The orthopedist wants to try a cast when she turns six months old. The cast will go all the way up to her neck, around her torso and around one leg to hold it in place. Our prayer is that the cast will help stop the progression and may possibly improve her curve. Please pray that the casting will be successful and for other future decisions about treatments.
Mary Graham's hip sockets did not form properly and there isn't much they can do right now. Later, and I'm not sure how much later in life, she will most likely face more surgeries to correct them. However, the orthopedist said children learn to adapt and, although with some delay, she will most likely crawl and walk.
Genetic testing is still in progress.....we are awaiting the urine testing that will take another couple weeks to point them in the right direction as to Mary Graham's condition or disorder. We continue to pray that her diagnosis is hopeful, treatable and non-progressive. After the urine results, the orthopedist will then schedule the casting. He wants to have more of an idea of her condition before doing that. Even if we don't have a definitive diagnosis after the urine, it sounds like they will have a better idea of what we are facing, and may then do more specific genetic tests (which can take months). We also ask you to pray that no new issues arise with Mary Graham as she grows.
We are also beginning physical therapy. How thankful we are that this is available in helping us to help her. Mary Graham is also a very happy, content baby and this will help her with all she has to face.
As we are beginning to grasp more of the longevity of Mary Graham's treatments and such, it is a overwelming reality to face at times. God has entrusted us with her and we are so thankful for the way he made her. Again, I just try and walk this path daily, not looking too far ahead, trying to let Him go before us. I know he can do immeasurably more than we can ask or imagine...I have witnessed this in my own life, but the doubt still comes. We ask you to pray for daily strength and endurance. The verse from Hebrews 12 has been on my mind, I've been meaning to look it up - well it just happened to be the verse of the day on bible gateway. "Let us run with perserverence the race marked out for us." It is already marked out for us, how we choose to run is up to us, but thankfully God says we are not alone.
There is much to be thankful for and I continue to hold tight to the promises of restoration in Jeremiah 33..."Call to me and I will show you great and unsearchable things that you do not know."
I will update when we get test results and a date set for the casting. We are so grateful for your prayers.
Mary Graham's scoliosis is not your typical run-of-the-mill scoliosis that is generally seen in babies of this age in that her back has a significant amount of rigidity - which will make treatment challenging (and probably quite lengthy). The orthopedist wants to try a cast when she turns six months old. The cast will go all the way up to her neck, around her torso and around one leg to hold it in place. Our prayer is that the cast will help stop the progression and may possibly improve her curve. Please pray that the casting will be successful and for other future decisions about treatments.
Mary Graham's hip sockets did not form properly and there isn't much they can do right now. Later, and I'm not sure how much later in life, she will most likely face more surgeries to correct them. However, the orthopedist said children learn to adapt and, although with some delay, she will most likely crawl and walk.
Genetic testing is still in progress.....we are awaiting the urine testing that will take another couple weeks to point them in the right direction as to Mary Graham's condition or disorder. We continue to pray that her diagnosis is hopeful, treatable and non-progressive. After the urine results, the orthopedist will then schedule the casting. He wants to have more of an idea of her condition before doing that. Even if we don't have a definitive diagnosis after the urine, it sounds like they will have a better idea of what we are facing, and may then do more specific genetic tests (which can take months). We also ask you to pray that no new issues arise with Mary Graham as she grows.
We are also beginning physical therapy. How thankful we are that this is available in helping us to help her. Mary Graham is also a very happy, content baby and this will help her with all she has to face.
As we are beginning to grasp more of the longevity of Mary Graham's treatments and such, it is a overwelming reality to face at times. God has entrusted us with her and we are so thankful for the way he made her. Again, I just try and walk this path daily, not looking too far ahead, trying to let Him go before us. I know he can do immeasurably more than we can ask or imagine...I have witnessed this in my own life, but the doubt still comes. We ask you to pray for daily strength and endurance. The verse from Hebrews 12 has been on my mind, I've been meaning to look it up - well it just happened to be the verse of the day on bible gateway. "Let us run with perserverence the race marked out for us." It is already marked out for us, how we choose to run is up to us, but thankfully God says we are not alone.
There is much to be thankful for and I continue to hold tight to the promises of restoration in Jeremiah 33..."Call to me and I will show you great and unsearchable things that you do not know."
I will update when we get test results and a date set for the casting. We are so grateful for your prayers.
Sunday, July 24, 2011
Believing before
I debated whether or not to update quite yet because we have not spoken to MG's neurosurgeon or genetics doctor since the MRI, but wanted to share what we know so far. I did speak to the genetics nurse and she was able to read the radiology report from the MRI and actually email the findings to us. It appears that there were no significant findings about her spinal cord. The main thing they were looking for was a tethered cord or some other issue of the spinal that could be causing the scoliosis. To be honest, I am both relieved and a little discouraged. I know this may sound warped....but if one of these things had been found, it would have been more definitive....a solution to the problem. However, we are trusting that this IS good and God knows what is best for Mary Graham. And we are so thankful that God protected her during that procedure. We may receive some more information about the MRI after speaking with the doctors.
So, now what? We continue to wait. They were able to collect a urine sample during the MRI to start a 2-3 week test that involves trying to narrow down what kind of genetic condition MG may have. Also, we are still considering options for her scoliosis treatment, which is the most important focus right now because it is progressing. We should have much more information about these options this week.
There are many ups and downs right now. But God is ever so present. I read my devotion this morning about the children of Israel after they crossed the Red Sea, it says in Psalms that "then they believed his promises and sang his praise." So they didn't believe in God's promises until after they saw His work. Hmm, sounds familiar....me. But he wants me to believe before....no matter what the circumstances. In Psalm 27 it says, "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." God has already been so gracious to let us see his goodness and His work. But in the land of the unknown (which is really where we all are, right?), I want to trust and believe before and not doubt Him and his love in circumstances of life.
We ask you to pray for upcoming treatments and tests results that are unknown at this time and that God would go before us to prepare the way. I will update this week as we learn more. There is much to be thankful and praise Him for and we know His perfect plan prevails.
Ah, then the next verse I read after all this...."You do not realize now what I am doing, but later you will understand." John 13:7
Thankful that we have a God who goes before...
So, now what? We continue to wait. They were able to collect a urine sample during the MRI to start a 2-3 week test that involves trying to narrow down what kind of genetic condition MG may have. Also, we are still considering options for her scoliosis treatment, which is the most important focus right now because it is progressing. We should have much more information about these options this week.
There are many ups and downs right now. But God is ever so present. I read my devotion this morning about the children of Israel after they crossed the Red Sea, it says in Psalms that "then they believed his promises and sang his praise." So they didn't believe in God's promises until after they saw His work. Hmm, sounds familiar....me. But he wants me to believe before....no matter what the circumstances. In Psalm 27 it says, "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." God has already been so gracious to let us see his goodness and His work. But in the land of the unknown (which is really where we all are, right?), I want to trust and believe before and not doubt Him and his love in circumstances of life.
We ask you to pray for upcoming treatments and tests results that are unknown at this time and that God would go before us to prepare the way. I will update this week as we learn more. There is much to be thankful and praise Him for and we know His perfect plan prevails.
Ah, then the next verse I read after all this...."You do not realize now what I am doing, but later you will understand." John 13:7
Thankful that we have a God who goes before...
Thursday, July 21, 2011
MRI is done
We are home from Mary Graham's MRI and it went very smoothly...praise God. Going back to try for the second time made us very anxious, but the Lord's hand in it was so evident......When we arrived at 6:00 am our genetics nurse met us there (she went out of her way to do this) to make sure some special labs got done while MG had the procedure. We were also then greeted by a good friend's sister, who we were not expecting, and she checked us in. Then after being taken to our room, the same anesthesiologist and nurse anesthetist that Lucy had for her eye surgery in May just "happened" to be assigned to us. They were wonderful and were well aware of what happened last time and said they were prepared. The nurse gave me a huge hug and said she had prayed for Mary Graham last night and this morning and just knew God was going to protect her. After they got her under anesthesia, the doctor came and found us in the cafeteria to tell us it went beautifully and then the MRI went off without a hitch. And, while we waited, a good friend from church came to visit us. She is doing great now and doesn't seem to be feeling any effects of her procedure. All of these things were blessings from God and took away so many of our fears. How gracious is He to be in the small details.
I kept reading the verse, "I will help you, I will uphold you with my righteous right hand." He did just this.
Thank you so much for praying....we will wait now to hear back from the doctors about the results. Please continue to pray for our anxious hearts, for a hopeful diagnosis and healing for Mary Graham.
I kept reading the verse, "I will help you, I will uphold you with my righteous right hand." He did just this.
Thank you so much for praying....we will wait now to hear back from the doctors about the results. Please continue to pray for our anxious hearts, for a hopeful diagnosis and healing for Mary Graham.
Wednesday, July 20, 2011
MRI and other things...
Was going to wait until Thursday to update, but we have had a little more develop with Mary Graham and have a few prayer requests. We spoke with our orthopedist this week after he had reached out to several other orthopedists in and out of town. We have been given some options about her treatment and we ask for prayers in this process. God is walking beside us and He has already shown us steps to take in this process. "If the Lord delights in a man's way, he makes his steps firm...the Lord upholds his hand." Psalm 37:23-24. Please pray that we would have clarity and firm steps as we make decisions about her treatment and for wisdom for the doctors. We also know things can change as we still haven't finished all the testing about an underlying condition she could have. Pray for us to stay clear minded as we process things as they seem to be constantly changing.
Although the things around us are changing, I am comforted in the fact that God is unchanging. He is showing up in some amazing ways to me as I have prayed to truly "see" Him in all of this. I could go on and on. The worry and fear that comes with caring for children can be unbearable at times. God has constantly been calling me back to Him, driving me to increase my faith in Him, not in this world. A devotion book I read this week said, "As you thus affirm your faith, shackles of worry fall off instantly. Enjoy my Presence continually by trusting me at all times." Shackles....a word that keeps coming back to me and lead me to listen to a song I haven't heard in a long time, "Shackles." The words say, "Take the shackles off my feet so I can dance...just to praise you, praise you through this circumstance." Then again today, my devotion book was asking, "what are you being shackled by?" I think God wanted me to SEE this word. It's almost like I can physically picture this, when I walk around with a heaviness at times. He wants to remove these shackles, to lift this load and I can praise Him. This is a daily choice to let him remove them.....but why would I want to carry them around? I want the control, I don't want to let go. But I don't want to be bound anymore. And there will be new shackles, but I will choose to let him take them today. There is much to be thankful for and I am seeking to praise Him.
Thank you for your prayers and wrapping us up in your love and support. God's love for us has been so evident in this last week through others, it is overwelming. Your phone calls, emails, cards, or even just saying you are praying is so humbling and we are forever grateful that you have chosen to walk with us. I know others of you are suffering in great ways and going through trials of your own. After running into a dear friend who is walking through some very difficult trials, she encourged me with the verse in 2 Corninthians "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all Comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." How amazing that God created us to bear each others burdens and I have witnessed this so beautifully in you.
I will update tomorrow after the MRI.....we covet your prayers for Mary Graham.
Although the things around us are changing, I am comforted in the fact that God is unchanging. He is showing up in some amazing ways to me as I have prayed to truly "see" Him in all of this. I could go on and on. The worry and fear that comes with caring for children can be unbearable at times. God has constantly been calling me back to Him, driving me to increase my faith in Him, not in this world. A devotion book I read this week said, "As you thus affirm your faith, shackles of worry fall off instantly. Enjoy my Presence continually by trusting me at all times." Shackles....a word that keeps coming back to me and lead me to listen to a song I haven't heard in a long time, "Shackles." The words say, "Take the shackles off my feet so I can dance...just to praise you, praise you through this circumstance." Then again today, my devotion book was asking, "what are you being shackled by?" I think God wanted me to SEE this word. It's almost like I can physically picture this, when I walk around with a heaviness at times. He wants to remove these shackles, to lift this load and I can praise Him. This is a daily choice to let him remove them.....but why would I want to carry them around? I want the control, I don't want to let go. But I don't want to be bound anymore. And there will be new shackles, but I will choose to let him take them today. There is much to be thankful for and I am seeking to praise Him.
Thank you for your prayers and wrapping us up in your love and support. God's love for us has been so evident in this last week through others, it is overwelming. Your phone calls, emails, cards, or even just saying you are praying is so humbling and we are forever grateful that you have chosen to walk with us. I know others of you are suffering in great ways and going through trials of your own. After running into a dear friend who is walking through some very difficult trials, she encourged me with the verse in 2 Corninthians "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all Comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." How amazing that God created us to bear each others burdens and I have witnessed this so beautifully in you.
I will update tomorrow after the MRI.....we covet your prayers for Mary Graham.
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