Not too much to say about today, it was a nice change from yesterday. We met with the general surgeon who will be in on MG's surgery. He was so nice and we could see the CT of her chest and spine. He will be there to help assist Dr. Campbell, the orthopedist, during her veptr surgery. Just another member of the team. One encouraging thing he said was that Mary Graham's size was fine for surgery, although small, he said she seemed healthy and not malnourished like some children can appear. So I thought this was a huge praise!
We were able to rest some today, Mary Graham has not quite been herself, but I'm sure she's just getting back to normal after yesterday. Tomorrow we meet the pulmonologist (also on MG's team) at 8:00 and then have a 4 hour pulmonology test at 1:00. She won't be able to eat or sleep after 7:00 am, so pray that goes well. She will be sedated for that test. Also, Dr. Campbell was able to work us in tomorrow, we weren't actually going to see him again until the day before her surgery, but they worked it out, so I'm so thankful for that.....lots of questions to ask him and now he has her MRI and we can discuss that. So, after tomorrow, we should have much more of an idea of what to expect when we return in about a week for her surgery. Please pray for a smooth day tomorrow, as it is also very full and for peace and trust in God and this plan for Mary Graham as we get very close to her surgery. God has blessed our days here already, thank you so much for all of your prayers.
Wednesday, February 29, 2012
Tuesday, February 28, 2012
Day Two
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!
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!
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.
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