Today was long. MG had her MRI and CT scan that lasted over 4 hours under anesthesia. She did really well, with just a couple bumps with her having some breathing issues during the procedure, but they were able to get those under control. She recovered just fine and she has been pretty content for the remainder of the day. Praise God that today is behind us and as a sweet friend reminded me today from 2 Corinthians, "My grace is sufficient for you, My power is made perfect in weakness." So thankful for this promise, because days like today are hard and His grace carries me through every minute.
Tomorrow we meet with the general surgeon, should be helpful to give us insight into the veptr surgery. On a side note, CHOP is the most amazing place-have been so impressed with everyone and the quality of care they give each family. This is just confirming that we are in the best place for Mary Graham's treatment.
Thank you for praying us through today!
Tuesday, February 28, 2012
Monday, February 27, 2012
Day One
We made it safely to Philadelphia, had nearly perfect travel, it was so smooth. Mary Graham is feeling good and has been an angel. We have been walking around some and exploring this city and the hospital that we will get to know very well over the next coming years. Prayers are being heard and God is walking before us.
Today we had our first appointment with anesthesia to prep for her CT and MRI that will take place early tomorrow morning. Although we don't know the exact time yet, it will most likely be around 7:30 am. Please pray for these tests. They will take about 4 hours and she will be under anesthesia the entire time. I didn't realize they would take quite this long. We ask you to pray for no complications during or after the procedure, for no unusual findings, and for the results to give the doctors better understanding of MG as they prepare for the veptr surgery.
Pray for our hearts and minds to rest in Him and not in the circumstances around us. Thank you again for lifting us up!
"Yet I am always will you, you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.....But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds." Psalm 73:23, 24 and 28
Today we had our first appointment with anesthesia to prep for her CT and MRI that will take place early tomorrow morning. Although we don't know the exact time yet, it will most likely be around 7:30 am. Please pray for these tests. They will take about 4 hours and she will be under anesthesia the entire time. I didn't realize they would take quite this long. We ask you to pray for no complications during or after the procedure, for no unusual findings, and for the results to give the doctors better understanding of MG as they prepare for the veptr surgery.
Pray for our hearts and minds to rest in Him and not in the circumstances around us. Thank you again for lifting us up!
"Yet I am always will you, you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.....But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds." Psalm 73:23, 24 and 28
Sunday, February 19, 2012
Mountains
"The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights." Habakkuk 3:19
Mary Graham is doing pretty well these days after battling the stomach bug and double ear infections, all that come with this time of year, but she is on the mend. We have been back to the pulmonologist and dietician this week. She has gained about a pound since the end of Novemeber....so not as much as we had hoped, but she's been through hip surgery and lots of sickness. We are making some changes in her diet (all pediasure and no more formula) to hopefully put as much weight on her as we can. The challenge with children and babies with scoliosis is that they are working harder to breathe and therefore, burn more calories, and since her spine is so malformed it really makes an impact on her overall health. We are continuing to pray for improvement in her growth.
Now on to the next several weeks.
I feel like I'm at the bottom of a huge mountain and about to start walking up. Finally I have gotten my act together and have all our childcare, schedules, traveling, appts, etc worked out (I think). Have been avoiding all of this, just enjoying these normal days. And God has truly allowed us to enjoy this time in between surgeries. I have been able to focus on the present and really not think about what's to come and this is very hard for me, so I know the peace is only from Him.
However, we leave in a week for CHOP, return home for one week, then back again for her surgery... reality begins to set in. As I have planned all the logistics for these events, I hold them loosely. One thing I have definitely learned this last year is that the Lord will orchestrate our steps. We will trust in Him with what is to come, His plan will prevail, it can not be thwarted, and it is best. I have faith that God will show us great things, but it's still so hard not to worry. Pray our hearts and minds to be prepared for what is to come. It may look like a huge mountain now, but God can move mountains and as He says in Habakkuk, He enables me to tread on the heights.
Here are some specific prayer requests that I ask you to pray over the coming weeks....
~Mary Graham to stay healthy
~Mary Graham's growth and development (we just started at The Bell Center for more therapy - it's such a wonderful place and so glad we have it here in our hometown)
~Testing the week of Feb. 27-March 2nd at CHOP (CT, MRI, pulmonology testing, dr appt)
~VEPTR spinal surgery on March 13th at CHOP (5-7 hours long)
~No complications during or after the spinal surgery - infection is a major complication in many children who have veptrs placed, so pray for no infection or big surprises during the surgery
~Loftin and Lucy to adjust well to us being gone for long periods of time - although I'm sure they will be enjoying all the time with grandparents, aunts, uncles, cousins and friends :)
~Logistics of traveling and schedules for our family and those helping us
~For God to sustain Lee and me as we go through this with our baby - it can be very hard as parents
Thank you for your faithfulness to pray. God has poured out his blessings on us and through you. I plan to update as frequently as possible while we are gone on the blog, so check back soon.
love,
Jen
Mary Graham is doing pretty well these days after battling the stomach bug and double ear infections, all that come with this time of year, but she is on the mend. We have been back to the pulmonologist and dietician this week. She has gained about a pound since the end of Novemeber....so not as much as we had hoped, but she's been through hip surgery and lots of sickness. We are making some changes in her diet (all pediasure and no more formula) to hopefully put as much weight on her as we can. The challenge with children and babies with scoliosis is that they are working harder to breathe and therefore, burn more calories, and since her spine is so malformed it really makes an impact on her overall health. We are continuing to pray for improvement in her growth.
Now on to the next several weeks.
I feel like I'm at the bottom of a huge mountain and about to start walking up. Finally I have gotten my act together and have all our childcare, schedules, traveling, appts, etc worked out (I think). Have been avoiding all of this, just enjoying these normal days. And God has truly allowed us to enjoy this time in between surgeries. I have been able to focus on the present and really not think about what's to come and this is very hard for me, so I know the peace is only from Him.
However, we leave in a week for CHOP, return home for one week, then back again for her surgery... reality begins to set in. As I have planned all the logistics for these events, I hold them loosely. One thing I have definitely learned this last year is that the Lord will orchestrate our steps. We will trust in Him with what is to come, His plan will prevail, it can not be thwarted, and it is best. I have faith that God will show us great things, but it's still so hard not to worry. Pray our hearts and minds to be prepared for what is to come. It may look like a huge mountain now, but God can move mountains and as He says in Habakkuk, He enables me to tread on the heights.
Here are some specific prayer requests that I ask you to pray over the coming weeks....
~Mary Graham to stay healthy
~Mary Graham's growth and development (we just started at The Bell Center for more therapy - it's such a wonderful place and so glad we have it here in our hometown)
~Testing the week of Feb. 27-March 2nd at CHOP (CT, MRI, pulmonology testing, dr appt)
~VEPTR spinal surgery on March 13th at CHOP (5-7 hours long)
~No complications during or after the spinal surgery - infection is a major complication in many children who have veptrs placed, so pray for no infection or big surprises during the surgery
~Loftin and Lucy to adjust well to us being gone for long periods of time - although I'm sure they will be enjoying all the time with grandparents, aunts, uncles, cousins and friends :)
~Logistics of traveling and schedules for our family and those helping us
~For God to sustain Lee and me as we go through this with our baby - it can be very hard as parents
Thank you for your faithfulness to pray. God has poured out his blessings on us and through you. I plan to update as frequently as possible while we are gone on the blog, so check back soon.
love,
Jen
Sunday, February 5, 2012
What's to come....
"Do not be terrified by them, for the Lord your God, who is among you, is a great and awesome God." Deut. 7:21
"Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23:6
Had many asking how Mary Graham is doing and what are our next steps with her. The last couple weeks she has been doing really well, her hips are better and she just seems to be back to herself. She is THE best baby when she feels good....so content, so easy going-this is such a huge blessing. We have just been doing normal stuff and it has been really nice, I am just enjoying her so much. She seems to be growing, although is still very small and we are making some slow progress with her sitting up and getting stronger. On March 4th she will turn one, in some ways I feel like she should be turning ten because this year has been so full, on the other hand, I can't believe it's already been a year. There is much for me to reflect on but will save that for another day.
February is already here and seems to be flying by. We will take MG back to CHOP the week of February 26th and stay for a week. We have appointments each day, meetings with doctors and then also CT, MRI and pulmonology testing all under anesthesia. Then we will return home for a week and then back again for her spinal surgery March 13th in which she will have her veptr rods put in. She will also have a muscle biopsy during her spinal surgery to test for muscular disease. The surgery is 5-7 hours, with about 3-4 days in ICU and then 7 on the floor. I am anticipating staying for 2-3 weeks, but praying for no complications and for us to get to come home sooner.
Deep breath. Although I am anxious, fearful, etc, etc of what she will go through, I know it is time. Her scoliosis is still getting worse and her breathing is becoming more labored. So I know that by March it will be the right time for this. And we are so incredibly thankful for CHOP and the team of doctors, if MG had been born 15 years ago she would not have any options. Praise God for his perfect timing. And we have seen His hand through it all.
It is easy to focus on what this or that doctor has said, the complications many children face with these rods, what her future may look like and so on....but our God is greater and I am clinging to that.
I will continue to update throughout the traveling and surgery. As always, we covet your prayers.
"Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23:6
Had many asking how Mary Graham is doing and what are our next steps with her. The last couple weeks she has been doing really well, her hips are better and she just seems to be back to herself. She is THE best baby when she feels good....so content, so easy going-this is such a huge blessing. We have just been doing normal stuff and it has been really nice, I am just enjoying her so much. She seems to be growing, although is still very small and we are making some slow progress with her sitting up and getting stronger. On March 4th she will turn one, in some ways I feel like she should be turning ten because this year has been so full, on the other hand, I can't believe it's already been a year. There is much for me to reflect on but will save that for another day.
February is already here and seems to be flying by. We will take MG back to CHOP the week of February 26th and stay for a week. We have appointments each day, meetings with doctors and then also CT, MRI and pulmonology testing all under anesthesia. Then we will return home for a week and then back again for her spinal surgery March 13th in which she will have her veptr rods put in. She will also have a muscle biopsy during her spinal surgery to test for muscular disease. The surgery is 5-7 hours, with about 3-4 days in ICU and then 7 on the floor. I am anticipating staying for 2-3 weeks, but praying for no complications and for us to get to come home sooner.
Deep breath. Although I am anxious, fearful, etc, etc of what she will go through, I know it is time. Her scoliosis is still getting worse and her breathing is becoming more labored. So I know that by March it will be the right time for this. And we are so incredibly thankful for CHOP and the team of doctors, if MG had been born 15 years ago she would not have any options. Praise God for his perfect timing. And we have seen His hand through it all.
It is easy to focus on what this or that doctor has said, the complications many children face with these rods, what her future may look like and so on....but our God is greater and I am clinging to that.
I will continue to update throughout the traveling and surgery. As always, we covet your prayers.
Wednesday, January 18, 2012
Prayer
Yesterday I received a package in the mail for me and Mary Graham. Opening it I found two beautifully hand woven shawls, a blue one for me and a yellow one for MG. I cried when I saw them. Also was a card from a sweet couple, The Millers (very good friends of the Sheppards). The Millers are from Texas and their church has been praying daily for Mary Graham and our family since this journey began. I have received numerous cards from them and have been so moved by their love and support....they are overflowing with the love of Christ. The shawls were made by members of their church in Texas and this is what was said about them....
The person who created your shawl prayed for you while knitting. That person may or may not have known your name or your circumstances, but every stitch was combined with prayer specifically for you. Whether in times of distress or moments of joy, let your prayer shawl be a reminder that God loves you. Remember when it rests on your shoulders that you are covered in prayer.
I have felt covered in prayer. Thank you to the church family at St. Matthew's Episcopal Church for taking the time to make these shawls and for praying for all of us, especially Mary Graham. These will be such a source of comfort and peace, especially when we are traveling and have long stays in the hospital. Thank you for the reminder of God's love through his people....the dedication and faithfulness of your prayers means more than you know.
God continues to use his people to bless us over and over. A precious friend, Kristin Prickett (who started a prayer pager ministry after losing her baby girl, Olivia, to SIDS over a year ago) gave me a prayer pager several months ago. When the pager number is called and we hear it go off someone, somewhere is praying for MG, and we don't even know who. My kids love it and every time it beeps they say, "someone's praying for Mary Graham."
MG is doing really well, getting better and stronger....your prayers and God's peace are carrying us through each day. We are so very grateful.
Mary Graham and her prayer shawlThursday, January 12, 2012
Little frog
Yay!
Mary Graham got her cast off yesterday and she looks like she is "stuck" in the froggy position. It really is amazing that her legs use to only hang straight and now look at her. I'm so glad it off and to have my baby back, but she's in pain. After having been in a cast for over 5 weeks, not having bent her knees, she is very stiff and weak. Anytime I move her, change her diaper or pick her up she screams because her muscles are so sore. The doctor said this would take a couple weeks to improve. She is happy to be back in her bouncy seat and I'm sure she will improve each day. We will be doing lots of physical therapy, with her VEPTR surgery just 2 months away. Pray, pray, pray for her to get stronger and put on some weight over these next 2 months. We praise God for her healing and that the hip surgery is behind us-thank you for praying with us. God is at work, hearing our prayers and I look forward to Him doing great things, I know He loves MG so much.
Saturday, January 7, 2012
Looking Up
Yesterday we took Mary Graham to the neurologist for the first time. Our pulmonologist and genetics doctors thought that a neurologist might provide some valuable insight in trying to better understand Mary Graham. As our neurologist put it, it is somewhat of a puzzle and we are trying to put the pieces together. He wants to look more into a possible neuromuscular condition based on her rigid hips and spine and delays. These are disorders of the muscles or nervous system and there is a wide range of these conditions. He wants MG to have a muscle biopsy that will show more... not sure when this will happen, possibly during her surgery in March. None of the other tests she has had up to this point would have shown these kind of conditions. So, more tests and more waiting.
On another note, Mary Graham is doing really well. She has been such a trooper in her cast, even having developed strep over the holidays - her sweet spirit is refreshing. I believe God gave her this temperament to better endure her challenges. Those of you that know her well, I'm sure would agree. Her cast will hopefully be coming off next Wed. Jan 11th.....thank goodness - I'm probably more ready than anyone. The holidays have been quiet for us this year, some days rather long with all the kids home and not being able to go many places...but even though it's been a little different, it's been good. It is during these quieter times that God allows me to hear him.
Hope the holidays were good for each of you. What are your new year's resolutions? Lee and I were talking about resolutions and I laughed thinking, I will probably drink more diet coke and exercise less this year :)
At the start of a new year I have heard many say they are "looking ahead to a new year" Honestly, I'm not so sure I want to be looking ahead. In fact, as I look ahead to 2012 there are some difficult things we will face with Mary Graham ... some I am dreading. The more I have thought and prayed about this, I have thought that God maybe wants me to see things differently. Then, yesterday, after a long appointment with the neurologist, I received a book in the mail from a sweet friend called Everyday Prayers by the pastor, Scotty Smith. When I opened it to the January 6th day, the verse read from Colossians:
Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory.
God wants me looking up, not looking ahead .....setting my heart and mind on things above, not on earthly things or my circumstances this day. Yes, just today. I have said before that the future is where the fear lies, but God gives me grace and mercy this day. So, this day we will remain hopeful in Christ. After all, as the verse above says, he is our life.
Lucy, our 4 year old, ran in my room this morning, and it was right when I was feeling overwelmed with everything, and enthusistically said, "Guess what our bible verse is at school? Call to me and I will answer you." She then said, "we know that verse." We do. The one verse that has stood out to me from the beginning of this journey. Then later outside she was pointing to a little heart on her riding toy that plays music and said, "I'm going to push this heart, because God loves you mommy and he lives in our heart." Thank you, Lord, for speaking to me through the eyes of a child.
God has already carried us through darker days and given us so much to be thankful for including the progress Mary Graham has made. My fears begin to melt away with just looking at her and looking back and seeing how God has worked in me and our family and the blessing Mary Graham has brought to us.....blessings that I could have never experienced if she had been born differently. Because of her and the way God has used her condition, I am changed, still being changed daily, and no longer see the world with the same perspective. And for this, I am thankful. And I hope and pray that by looking up I no longer focus so much on my circumstances, but seeing God's work all around me. God is so much bigger than I can even fathom and no matter where we are in life, this is His best.
No matter what the doctors say and no matter what/when/if she gets a diagnosis....we trust Him. I hope to choose to walk by faith and not by sight each day this new year that is put before me, no matter what may come, or how hard it will be to trust or understand this plan.....I know He will not grow tired and weary and his understanding no one can fathom. I look forward to seeing God do great things and to focus on the joy that is set before me.We remain hopeful this day. My new year's resolution.....looking up.
We ask for your continued prayers for Mary Graham's....for her hips to continue to heal. Please pray for our travels to Philadelphia in February and then again in March for her spinal surgery. Pray for the testing and a hopeful diagnosis. Pray for her growth and development. And pray for us to continue looking up and praising Him for all he has done and will continue to do. I will continue to update as we get closer to her spinal surgery and all that is involved. Thank you again for coming along beside us and continuing to pray for Mary Graham, we are so grateful.
On another note, Mary Graham is doing really well. She has been such a trooper in her cast, even having developed strep over the holidays - her sweet spirit is refreshing. I believe God gave her this temperament to better endure her challenges. Those of you that know her well, I'm sure would agree. Her cast will hopefully be coming off next Wed. Jan 11th.....thank goodness - I'm probably more ready than anyone. The holidays have been quiet for us this year, some days rather long with all the kids home and not being able to go many places...but even though it's been a little different, it's been good. It is during these quieter times that God allows me to hear him.
Hope the holidays were good for each of you. What are your new year's resolutions? Lee and I were talking about resolutions and I laughed thinking, I will probably drink more diet coke and exercise less this year :)
At the start of a new year I have heard many say they are "looking ahead to a new year" Honestly, I'm not so sure I want to be looking ahead. In fact, as I look ahead to 2012 there are some difficult things we will face with Mary Graham ... some I am dreading. The more I have thought and prayed about this, I have thought that God maybe wants me to see things differently. Then, yesterday, after a long appointment with the neurologist, I received a book in the mail from a sweet friend called Everyday Prayers by the pastor, Scotty Smith. When I opened it to the January 6th day, the verse read from Colossians:
Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory.
God wants me looking up, not looking ahead .....setting my heart and mind on things above, not on earthly things or my circumstances this day. Yes, just today. I have said before that the future is where the fear lies, but God gives me grace and mercy this day. So, this day we will remain hopeful in Christ. After all, as the verse above says, he is our life.
Lucy, our 4 year old, ran in my room this morning, and it was right when I was feeling overwelmed with everything, and enthusistically said, "Guess what our bible verse is at school? Call to me and I will answer you." She then said, "we know that verse." We do. The one verse that has stood out to me from the beginning of this journey. Then later outside she was pointing to a little heart on her riding toy that plays music and said, "I'm going to push this heart, because God loves you mommy and he lives in our heart." Thank you, Lord, for speaking to me through the eyes of a child.
God has already carried us through darker days and given us so much to be thankful for including the progress Mary Graham has made. My fears begin to melt away with just looking at her and looking back and seeing how God has worked in me and our family and the blessing Mary Graham has brought to us.....blessings that I could have never experienced if she had been born differently. Because of her and the way God has used her condition, I am changed, still being changed daily, and no longer see the world with the same perspective. And for this, I am thankful. And I hope and pray that by looking up I no longer focus so much on my circumstances, but seeing God's work all around me. God is so much bigger than I can even fathom and no matter where we are in life, this is His best.
No matter what the doctors say and no matter what/when/if she gets a diagnosis....we trust Him. I hope to choose to walk by faith and not by sight each day this new year that is put before me, no matter what may come, or how hard it will be to trust or understand this plan.....I know He will not grow tired and weary and his understanding no one can fathom. I look forward to seeing God do great things and to focus on the joy that is set before me.We remain hopeful this day. My new year's resolution.....looking up.
We ask for your continued prayers for Mary Graham's....for her hips to continue to heal. Please pray for our travels to Philadelphia in February and then again in March for her spinal surgery. Pray for the testing and a hopeful diagnosis. Pray for her growth and development. And pray for us to continue looking up and praising Him for all he has done and will continue to do. I will continue to update as we get closer to her spinal surgery and all that is involved. Thank you again for coming along beside us and continuing to pray for Mary Graham, we are so grateful.
Subscribe to:
Posts (Atom)