"Teach me to number my days, that I may gain wisdom....satisfy me in the morning with your unfailing love, that I may sing for joy and be glad all of my days." Psalm 90:12,14
I am so incredibly moved that so many of you have responded to running or donating to the Bell Center in honor of Mary Graham. Thank you, thank you for all you are doing to help MG.
I finally got my act together and have the website set up. It seems I was confused about the fundraiser and how many runners we actually need.....we actually only need a few official "bellrunners" running to represent MG in the marathon and my brother in law and Lee's relay team are going to run. This is the biggest fundraiser for the Bell Center and they want to raise awareness and funds to continue helping kids like Mary Graham. Here is the website if you want to see more of what they do...www.thebellcenter.org. I greatly appreciate those offering to run for her. Please know that there is no pressure at all to donate....mostly we are grateful for your prayers and support...those carry us through this journey over and over again.
So, these are the options you can do to help support Mary Graham and the Bell Center....
If want to have a Bell Center shirt with MG's picture on it, you can go to this website and register for Team Bell Center. Go to https://www.imathlete.com/events/bellrunners and click on "Register for this Event" and register for Team Bell Center. Wearing these tshirts help promote the Bell Center and all the profits for the tshirts go to the Bell Center.
If you want to donate, go to www.imathlete.com/donate/teammg or mail a check to The Bell Center, just indicate that it is for Mary Graham. The address is 1700 29th Court South, Birmingham, AL 35209.
Thanks again for all your love and support for our little girl. I will update more soon about our crazy Christmas. But today she is feeling good, we are thankful for each day that she is healthy. God bless!
Thursday, December 13, 2012
I didn't get formal Christmas cards in the mail this year....so here ya go :)
Merry Christmas!
"Jesus is the same yesterday, today and forever." Hebrews 13:8
Hoping each of you have a blessed Christmas with your family and friends. Thank you for being a part of our lives. Merry Christmas!
love,
The Sheppards
Loftin (6.5), Lucy (5) and Mary Graham (21 months)
This is Henry, he is two years old and had his VEPTR rods inserted on November 1st....he got a massive infection similar to MG's, but his was much larger and he had emergency surgery last Sunday to clean out the infection and start on antibiotics and was in the ICU. He had been stable but today he crashed two times and passed away this afternoon. Carla, his mom and I got to meet while at CHOP just a few weeks ago and we had become good friends via email, she is a Christian and we bonded immediately with our babies going through similar things...I also got to meet sweet Henry, who was adopted from Ukraine last year. We have a very tight, supportive veptr family group and everyone is in shock and heartbroken for them. He is resting in the arms of Jesus now and his family loves the Lord. Please pray for his family.
We're home! Sorry for the long delay in posting....Mary Graham and I flew home on Thanksgiving Day and were able to spend it with our family. It is so good to be home and especially see Loftin and Lucy...this trip seemed so much longer than some of our others up to CHOP.
Needless to say, we were very thankful on this Thanksgiving Day. Thankful to God and for those of you who so faithfully prayed for her. And for my sister who flew up and helped me the last 5 days. The last several days have been a bit of a fog, but it is starting to lift...it can be so emotionally and physically draining, although Mary Graham hasn't missed a beat and she is doing so great. She has a big incision on her back, but it doesn't seem to bother her, except when we have to change the dressing. In fact, when we got home she immediately wanted to get in her zip zac chair and has been zipping around ever since. She's getting really fast in it and can even turn around.....amazing how quickly she has picked it up. Today Lucy was coloring in her room by herself and MG was in her zipzac and was wheeling in there to "play" (she loves to just go in Lucy's room and pull things off her shelf) but then I heard Lucy say, "No, Mary Graham, you can't come in here...momma, get her, she is just going to roll over all my color pages." I laughed at how funny that sounded...but then I'm thankful that MG has a way to "get around" now, even if she's rolling over things she shouldn't. And how Lucy just thinks MG in her zipzac is the norm.....this zipzac is really a huge blessing.
MG will have lots of follow up appointments, bloodwork, stitches removed and will remain on antibiotics for the next few months. Asking for continued prayers of healing for this infection and for it to not return. MG will have her expansion surgery in two months on Feb. 5th....so back to Philly we go. That's the plan, but I tend to hold these "plans" loosely, as you never know what God has planned and we trust in Him. He brought us through this trial and remains faithful always.
Thanks again for your prayers....we are hoping for a nice quiet Christmas....well, relatively quiet with three kiddos :) And hope you each enjoy this next season of celebrating our Savior's birth....praise God that there is so much hope in this world because He came.
Mary Graham is all done with surgery....it went very well. Dr. Campbell was pleased with her healing and removed the vac. She will remain on antibiotics for several weeks. She's recovering well and we are so very thankful. Thanks be to God for walking us through today and everyday we have been here. Please continue to pray for the infection to be gone completely as we return home. If she's doing well, we will return to CHOP in a couple months for her expansion.
The plan is to be discharged tomorrow and fly home on Thanksgiving day, Praise God! I think I am more thankful this year than ever...thank you for praying for MG and us.
This pic is about how we feel right now...let us out :) MG is still doing really well, just battling a little pain, but overall still improving. The ortho doctors said her surgery tomorrow would probably be removing the vac and sewing her up, or if it's not healing properly, to replace that vac with a new one and stay another week, or there is always a chance the rod will have to be removed, or if Dr. Campbell feels right about it, he may go ahead and do her expansion. So, always lots of options to play out. Of course I would choose the first. Met some families who have been here weeks and weeks....it will be ok no matter what the next step is for MG. Thanks so much for all your prayers of healing and strength and endurance. Hoping we are closer to the finish line for this journey.
Not sure what time her surgery is tomorrow, I am hoping first thing in the morning. I will post tomorrow when she is done.
"Cast your burden upon the Lord, and He shall sustain you." Psalm 55:22
Mary Graham continues to get better each day. We are so thankful for your prayers and know they are being heard. Her next surgery will be on Tuesday, it was suppose to be on Monday, but something happened with scheduling. So, sounds like we may be eating turkey in the CHOP cafeteria :)
Since we do a lot of sitting around right now, I have been reading friends' "thankful" posts on Facebook. Lucy had her Thanksgiving program at school, which I'm so sad I missed, but I know the songs she was singing....she's been practicing for weeks. She was singing the hymn "Give thanks"....so that song has been on my mind. And so I decided to tell what I'm thankful for...because, even though, this is not what we planned for MG, when I look around, it could be a lot worse and I truly am thankful for so much.
Lee. I am so thankful for him. He is a loving and involved husband and father and is a perfect match for me. God knew the kind of husband I would need to get us through these harder times. He even let me escape for a couple hours today and explore Philly, the shopping district is great therapy :)
Family. My parents and Lee's parents are so loving and supportive. We don't have to worry at all about Loftin and Lucy when unexpected travel or extended hospital stays come along. Such a blessing. And my sweet sister is flying up to Philly on Sunday to stay with us since Lee is going back home tomorrow.
Friends. We have the most amazing friends...they text all the time checking in, asking how to help and mostly just praying for us and MG-I would not be able to get through any of this without my family and friends. You are a blessing!
CHOP and all our nurses and doctors. Without this place and Dr. Campbell, MG would not have as quality of life. Even though it's far from home, I'm so grateful for this place.
Technology. I'm really so thankful for Kindles, Ipads, Netflicks, etc, etc...it makes long hospital stays more bearable...Lee resorted to watching clips from Airplane yesterday, and I have watched probably 10 episodes of Parenthood. Desperate times call for desperate measures-right?
Jesus. Without Him, nothing would be worth living for and He is always with us and loving us through the good and the bad. And He gives us hope that this is not all there is.
And I could go on and on....please continue to pray for MG, her healing, her surgery next Tuesday and for strength and peace for us. Lee is going home tomorrow and my sister is coming up on Sunday to stay for several days.
Here's a little video of MG this afternoon, praise God, she is definitely improving. We found out that she has a staph infection, not MRSA, which is a morning difficult infection to treat. So we are so thankful that they finally have a specific diagnosis of the infection and can have a better treatment plan. Pray that the infection will be completely gone and not "hanging" out on the rods where it could come back. Thank you for praying!
Just a quick update....Mary Graham is doing better today than yesterday, she had a rough time just getting over the surgery. But today she hasn't run any fever and is eating a little and playing. We are just waiting and watching her heal. Please continue to pray for her healing and the infection to be gone completely. We are so grateful!
Mary Graham is out of surgery, she did fine, still in pain and recovering from anesthesia. Dr. Campbell found the infection, cleaned it out and place a wound vac drain at the sight of infection. The vac will stay in for a week and then she will undergo surgery again to remove it. At that point, the drs decide if the tissue is healing well enough to take out the vac. There is a 50/50 chance the rod may have to come out. So, she will start back on antibiotics and hopefully be on the road to healing.
Pray for healing and the vac to get all the infection. She still has a long way to go and we will be at CHOP for a while. We are thankful that it is done and went well, thank you so much for praying.
Last night they did an ultrasound and found what appears to be fluid/infection around her left rod (this is the place where she always rubs). Praise God for some answer to the mystery infection, although we won't know for sure until they do surgery. I was literally on my knees during that ultrasound praying that they would find some and God, in all his mercy, answered. She has had a CT today and will have surgery tomorrow. The surgery will most likely not be the expansion. They will go in and culture and clean out the infection, see how bad it is and then possibly put in a wound vac that will remain in her back for a week. Rod removal is always a possibility, and we will cross that bridge when we come to it. She will remain on heavy antibiotics too. So, lots of different scenarios could play out tomorrow, I have quit guessing, but I do ask the doctors lots of "what if" questions, they love that :) Only God knows what will happen, so we will have to trust in His plan.
When trying to decide what to do in the middle of the night before our 6:00 am flight out of Birmingham, when MG spiked that fever....we prayed that we were making the right decision to get on the plane and fly up here to CHOP. I was even calling Med-Jet at 1:00 AM to see about getting her transported up here from Children's in Bham. But God has gone before us. I hardly even remember flying up here (probably because we hadn't slept) But really it was like God just carried us up here, keep MG safe and stable, with no delays, and we came directly to CHOP from the airport after she threw up at baggage claim. They ER was quick and they got us in, understood her history of this infection and before we knew it we were admitted and God just started moving quickly and the doctors at CHOP did too :). Her already scheduled surgery for tomorrow will take place with Dr. Campbell, of course it being much different than we expected and still won't know for sure until they get in there.
Although this is exhausting and overwhelming, we just want her to feel better and to get the infection out of her body. So we praise God that he has moved and His timing is so perfect. She had been great for three weeks off antibiotics at home and the night before leaving for CHOP it resurfaces....His hand is in the details. We are exactly where we need to be (maybe for a while) but we ask you to pray for surgery tomorrow and thank God for all he has done so far, but continue to ask Him to heal her from the infection and wisdom for the doctors.
MG is doing a little better this afternoon, her fever is down and she has been eating and playing a little-not wanting to move much because of pain.
Thank you so much for praying for us once again, MG is so tough and we know hospital life very well.... there is no tired like hospital tired....it's no fun, but God gives us grace and peace when we need it. And your prayers keep up lifted up and moving forward. We appreciate it more than you know. Keep em coming, God is always hearing them and ever-present and working. Thank goodness we have a God working on our behalf and loving us through it all.
I will post more tomorrow after surgery, it will most likely be first thing in the morning.
We have made it to Philadelphia and went straight to CHOP. MG spiked a fever at 1:30 am this morning. We debated taking a later flight and going to the ER in Birmingham, but we felt like CHOP is where she needs to be if her infection has returned. She has been pretty pitiful all day. So far we know her bloodwork came back showing high white blood count and inflammatory markers, just like before with her infection. We are waiting to hear from ortho drs and will be admitted today. Not sure what the plan will be regarding surgery. Please pray for all that is ahead of us and the doctors involved and for MG to feel better. They are starting back in antibiotics and will start a number of tests to try and find the infection. We have been down this road before and it is no fun and I have a feeling we will be here a while. Pray for answers to come quickly and for them to be able to treat her and for her to get better. We are so thankful for your prayers, we know God isn't surprised by any of this. Pray for peace and endurance for us.
We leave very early tomorrow morning for Philadelphia and Mary Graham has not been herself today. She is in some pain and pulling on her back, the same place where she did before when the infection began. Although I hope I am wrong, I feel like I know her so well and I fear it might be returning. Thankfully we are heading to CHOP and that is the best place for her to be if we start to face infection again.
MG will have surgery Tuesday morning for an expansion of her rods. In July, this was a quick procedure with one night in the hospital...I'm afraid things may not be as cut and dry this time around with the possible infection. I'm not exactly sure what to ask you to pray for.....pray for wisdom for the doctors and, if the infection is returning, to be able to find it and have a plan to get rid of it. Pray for Lee and I to be prepared for whatever may come. Pray mostly for Mary Graham as we travel and wait for surgery, for her pain and comfort to be managed. Also, please pray for Loftin and Lucy and the grandparents taking care of them...we are so thankful for such wonderful family and they love to being with them.
Pray for God to go before us, let us trust in His plan for this trip and to see His hand in all the details. He is always faithful. I will update my blog and caringbridge....we are always so grateful for your prayers.
Mary Graham has been going to The Bell Center, a privately funded early intervention program for special needs children, since last February and it has been such a blessing for her and all of us. Right now she goes on Tues and Thurs for a two hour class where she gets Physical Therapy, Occupational Therapy, Speech and Special Ed. In addition, they do music, dance, and even have dogs come in for pet therapy. She had a hard time adjusting at first (cried most of the time), but now is doing really well and actually is having fun and working hard. The therapists and all the volunteers are wonderful and I tear up everytime I take her because it is such a place of joy and hope in the midst of this hard journey we are on for her. Here is the website if you would like to see more of what they do....http://www.thebellcenter.org/.
Coming up in February is the Mercedes Marathon here in Birmingham, which is the biggest fundraiser for The Bell Center. We are just starting to get together Team MG, those that will run for the Bell Center in her honor. The options are to run or walk a 5K, the half marathon (13.2 miles), the full marathon (26.2 miles), or a relay team of 5 people divided up as a 10k (6.2 miles), 5k (3.1 miles), 10k, 5k, and 12k. I have had several friends and family tell me they are interested in being on a relay team or running for MG and you get to wear her picture on your shirt when you run. I'm trying to get our team together and start getting everyone registered. My plan is to raise $2620, that's $100 per mile. If you want to participate and run for MG, we would love for you all to be a part of her team. But do not feel like you have to donate money or ask donors for money, I'm going to take that under my wing. However, if you want to donate or know someone who would like to, please let me know.
If you want to run for MG or donate to our team for the Bell Center, contact me at jennifercsheppard@hotmail.com and I can tell you how to register or donate.
Thanks for all your prayers and support for Mary Graham!
Mary Graham's fever never returned after Wed afternoon, we are so thankful. Still continuing to pray the infection stays away. Thanks for all the prayers!
(Had just finished up this post today when Mary Graham woke up this afternoon with fever, please pray for her and that this is not a sign of the infection returning. Up until now she had been great-see below)
"His delight in not in the strength of the horse, nor his pleasure in the legs of man, but the Lord takes pleasure in those...who hope in his steadfast love." Psalm 147:10-11
First of all, I am so grateful to my friend Sarah Beth for setting up the prayer chain for Mary Graham and our family. MG is doing great....so far so good.....no fevers, pain, etc that would indicate infection. We are about 12 days out from being off the antibiotics and she is happy and eating great. The doctors said it could take up to three weeks for the infection to present itself again.....please keep praying for her and her upcoming surgery on Nov 13th in Philadelphia. Your prayers are being heard....she is doing so well and there are days when I know His hands are carrying me through because of your prayers. People ask what they can do to help us at times and prayer is the one thing I am most thankful for.
Last week, after feeling a little at a loss about getting MG some kind of gait trainer or equipment that would help her move better, I prayed for God to intervene, feeling like my hands were tied (getting assessed and getting this type of medical equipment is a process, a long process). But, I found something in a magazine one night that I thought would work for MG. She is now 20 months old, and I am her means of mobility, I move her when she wants to move. At her age she needs to be able to move and explore and she doesn't have the strength or ability to do that right now. So, after discovering this little chair, called a "ZipZac" chair for little ones who can't walk (it was invented by a family with a little boy with spinabifida, named Zac). I emailed my PT at the Bell Center about it....she called the company that day and they mailed it to us within a week to borrow two months for MG to try. They are rather expensive, so it is great that they let us borrow it first. She is still getting used to it and I'm so thankful that God orchestrated these details so quickly.
Here are a couple videos of her, she's gotten even better since these were taken. She has never been able to play with the magnets on the frig independently, she was so excited.
The "ZipZac" chair is basically a tiny wheelchair. We are thankful for something to help her move around and are continuing to work with her on standing and taking some steps. I was thrilled to get the little chair but it was quite a dose of reality seeing her in it for the first time. When I was pregnant with MG, never would have I pictured my 20 month old in something like this, it is a lot to take in some days. We pray that she will continue to gain strength and walk one day.
Lately I have been reading a book a friend recommended called Sweet and Bitter Providence by John Piper...it's about Naomi and Ruth and their journey through a difficult tragedy, but then God's grace brings them out of a bitter providence, as he orchestrates their steps. Naomi is so overwelmed by God's bitter providence, after her husband and sons have died, that she can't see the signs of hope as they start to appear. She believes in God's sovereignty, but is not able to see his grace revealed. As Piper puts it, "she is unmoved from her sorrows." Ruth, on the other hand, has faced the same bitter tragedy and left her family and Boaz tells her, "the Lord repay you for what you have done....the God of Israel, under whose wings you have come to take refuge." Piper goes on to discuss the beauty of Ruth's response to her tragedy....she took refuge in the Lord and was able to receive his grace, mercy and strength during this time. She has "humble confidence in the mighty and merciful wings of God." Sometimes I think I am more like Naomi, but I want to be more like Ruth....to just take refuge in the Lord and allow Him to pour out his mercy and grace and not let bitterness of circumstances cloud these. He wants us to find refuge only in Him and Him alone....I know I try and find it other places. After reading the story of Ruth again, this book really opened my eyes and God gave me such a sense of hope, a renewed hope in Him and his love and that He is in the small details.
I love what Piper says in the end, "With Ruth and Naomi, let us fall on our faces, bow before the Lord, confess our unworthiness, take refuge under the wings of God, and be astonished at his grace."
We are stopping Mary Graham's antibiotics today, the doctors feel like this is the best plan and we will now wait and see if the infection returns in the next couple weeks before we go for her surgery at CHOP. Just took her to have bloodwork and levels checked so they can keep a close eye on her these next few weeks.
Please pray for NO infection to return! It's a little hard taking her off....they are like a security blanket to me.... keeping her healthy and feeling good. Now we will hold our breath and wait.
"Many of our prayers are directed toward the quick and easy solution. Long-suffering is sometimes the only means by which the greater glory of God will be served, and this is, for the moment, invisible. We must persist in faith. God has a splendid purpose. Believe in order to see it." ~Elisabeth Elliot
I love this quote above and it seems to describe our circumstances with MG....one minute I look at her and see how much of a struggle it is for her to just sit or stand up and the next minute I see how far she has come in her little lifetime. Persisting in faith is hard when things seem to be moving in slow motion....but thankfully it's not on my own and I believe in Him and His plan. One day it will all be more clear, less invisible. Most days God gives me such peace about her and her life ahead and then other times, even when she's doing so well, I'm thankful, but also worried about what's just around the corner for her. God is meeting me in these places. And even in the midst of these places, life goes on and we have had so much joy after the darker days, like when she was sick at Children's. School is off to a great start for Loftin and Lucy and we were able to go to the beach a couple weeks ago. Things have been so normal lately and it's been wonderful.
Right now MG is just full of personality, talking tons and feeling really good these days. And her appetite has improved. This is a huge praise. I think she must have heard the doctors discussing putting in a feeding tube and decided it was time to eat more :) Her weight has leveled off on the charts and they are still concerned. She needs to grow and be strong, especially her bones and with the rods in her body and to make better progress-everything is connected. We continue to pray that she keeps eating and growing. We do not want a feeding tube that involves more surgeries, more issues. She is also enjoying the Bell Center where she goes for therapy, this was a rough start, she cried all the time. But now she seems to love it. Also, she's gone to Mother's Day Out some so that has been a huge blessing for me. Her teachers are so sweet and loving to her and accommodating to her needs. She seems to be wanting to move more, can stand a little longer and take a tiny step with her left foot if I'm supporting her. Our PT is in the process of assessing her to see if she could be ready for a gait trainer, this is a walker with a seat for added support. I know she would love to be able to move and explore on her own. Every child with MD is different....we pray that she continues to progress and gain strength.
So what's next? Right now she is still on the mega antibiotics for her infection. She may come off of them just before we go up for her surgery. Please pray for no infection to return or resurface. We are going to CHOP in Philly for her next expansion surgery November 13th, it's just around the corner. This is where is gets kind of complicated, it seems like we may not have seen the end of the infection. Hopefully, that will be all it is, an expansion surgery. Back in July, it was so quick and easy. However, once she is in surgery they may discover the infection and it could result in rod removal, a wash out of the infection, more antibiotics, etc. But we are praying that the antibiotics have knocked out this infection for good and that her broken ribs have healed well. Please pray for a successful surgery, wisdom for Dr. Campbell and for God to go before us and give us peace no matter what direction this takes.
Thank you for your faithfulness to pray and love our family and we pray that God is glorified through it all.
Mary Graham has been getting a little better each day, in fact, today was her best day since she has been out of the hospital. And we are beginning to feel a little bit normal again too :) She is still on clyndimiacin for the month, and is taking it like a champ. Every nurse and doctor told us it was horrible to taste, but she sucks it down three times a day like candy...this is really a huge blessing. Her appetite hasn't been great, but it seems to be improving a little, and these antibiotics can really mess up your stomach, so that probably has something to do with it. We pray that her appetite increases, as she needs to be strong and have enough skin to cover the rods on her back.
We spoke with Dr. Campbell and were able to get his insight into the broken ribs and infection. He says her veptr rods are still secure, and he believes her broken ribs will be a slow healing process. Her ribs are thin and delicate and this can happen in children with veptrs, especially since her spine is so rigid. But he is pleased that the device has done as well as it has so far. Also, if the ribs do not heal properly, he said it can be easily moved further down to another rib. As far as the infection goes, we will remain on the antibiotics, hoping and praying that this will knock out this infection. However, it is common that these bacteria love any "hardware" in the body and often can be hard to totally get rid of.
Many things to be thankful for.....MG is feeling better and still having some pain, but that's improving too, she is tolerating medicines, we aren't having to rush up to Philly to have a surgery and Dr. Campbell feels hopeful that she will heal and we can continue on the veptr journey. The veptrs are the best thing for her right now to stabilize her spine and give her room for her lungs to develop. Also, we are thankful for each of you praying for her. Please continue to pray for her healing and pain and her growth and development to progress.
I have been thinking so much lately about healing and I was reminded of a poem a friend sent me years ago when Lucy, our now 5 year old, was a very sick baby. The words are so good. It is so hard to watch MG go through so much, so many surgeries, procedures, illness and pain and I want her to be healed so quickly. But God has continued to remind me that He is not finished. Healing takes time. I become impatient and want things to go my way, but He teaches me so much more in this slow healing time. Not just the immediate healing of her ribs and infection, but to see that the healing is much bigger than that. And really, so much of Mary Graham's life ahead is unknown to us and these "surprise" hospitalizations help me to surrender her over again to Him. And I rest in the fact that he made her "wonderfully" and knows her body well, even when it seems so complicated to us and often even the doctors treating her, so what can we do but trust Him. Like the line below says, "accept the anxiety of feeling yourself in suspense and incomplete. Above all, trust in the slow work of God."
We remain thankful for today and that God is working in her and in us through this trial.
Above all, trust in the slow work of God. We are quite naturally impatient in everything to reach the end without delay. We should like to skip the intermediate stages. We are impatient of being on the way to something unknown, something new. Yet it is the law of all progress that is made by passing through some stages of instability and that may take a very long time.
And so I think it is with you. Your ideas mature gradually. Let them grow. Let them shape themselves without undue haste. Do not try to force them on as though you could be today what time -- that is to say, grace -- and circumstances acting on your own good will will make you tomorrow. Only God could say what this new Spirit gradually forming in you will be.
Give our Lord the benefit of believing that his hand is leading you, and accept the anxiety of feeling yourself in suspense and incomplete. Above all, trust in the slow work of God, our loving vine-dresser.
Mary Graham is back home from her second trip to Children's....praise God. The antibiotics seem to be working and her labs were significantly better this morning. She is not 100%, we continue to pray for healing. The hard thing about these rod infections is that they are difficult to get rid of all together. But we are thankful for today and that she seems to be better.
Also, we are waiting to speak with Dr. Campbell in Philly, it took a while for all the scans to arrive and he is reviewing them now. Hoping and praying for some encouraging news and a plan for her rods and broken ribs.
As always, thank you so much for praying for her...I will keep you posted. The last two weeks have been hard and long. But God has been with us and we have felt His presence. Thank you for lifting us up.
I have just started a Caring Bridge page for updates about Mary Graham. A friend recommended that I do this, since it's hard to check a blog frequently and things change from day to day with her. You can login and get emails when I update. I will post the exact same updates on my blog, so you can always continue to check on her there. We are always so grateful for your support and love! http://www.caringbridge.org/visit/marygrahamsheppard
This morning I took MG to see Dr. Makris at the pulmonary clinic to check her bloodwork, since she has been slowly getting worse since we have been home from the hospital. And I had a feeling that we would be staying....and we are. Her labs showed that she still has an infection in her body. The plan is to start her back on the same antibiotics from last week that seemed to healing her and treat soft tissue infections (such as a rod infection). She is actually on a higher dosage than last week and if she improves the next few days then we can go home on oral antibiotics, which would be much better than a picc line. The doctors still don't know for sure if it is a rod infection, but that seems to be the best guess as of now and the reason she got sick again after being home. Also, we are still waiting on word from Dr. Campbell about her ribs, hoping that we don't have to make a trip up to Philly anytime soon, at least until this infection gets take care of. She has been a trooper today, she is getting use to hospital life, not really, but at least she only cries when someone is messing with her, not just when they walk in the room.
Today I have felt more peace than I have in the last ten days. She is exactly where she needs to be and I believe this is one step closer to healing her. Please pray these antibiotics knock out this infection and for her pain to subside.
We are in the new Children's of AL, last week we were in the older building. It's super nice and a beautiful view, we are on the top floor. Thank you for praying and continuing on this journey with us. Two devotion books I read last night had the same verse and then I heard it in a song today...We praise God for his faithfulness through what has felt like at times walking through the desert.
Psalm 63 "You God, are my God, earnestly I seek you; I thirst for you, my whole being longs for you, in a dry and weary land where there is no water. I have seen you in the sanctuary and beheld your power and your glory. Because your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands. I will be fully satisfied as with the richest of foods; with singing lips my mouth will praise you. On my bed I remember you; I think of you through the watches of the night. Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me."
Please continue to lift up Mary Graham...her pain is very bad right now, keeping her up at night and crying any time we move her. Dr. Campbell in Philly is still waiting to get some of the CT scans, so we will most likely speak with him tomorrow. We are going to see Dr. Makris, our pulmonologist, in the morning to check bloodwork, as many of the doctors are still concerned about a rod infection. Dr. Makris has been a huge blessing in all of this, taking role of being the middle man in all these moving parts.....The waiting and watching her in pain is so hard right now. Please pray for pain to improve and for no sign of infection to show up on the bloodwork. Pray for us to trust that God is in the details and He will move quickly in restoring her.
We are home and so thankful! MG is feeling much better, still battling some pain, mostly on her left side. We will talk with Dr. Campbell in Philly on Monday about her rods. God heard our prayers and we thank you for praying for her and us. Please pray for no infection to return and continued healing.
The Good.....MG is doing much, much better. In fact, she is now back on just motrin and tylenol and that seems to be controlling her pain. She was very happy most of the day, ate more and just seemed more content. She is still very hestitant to move, but we hope that will keep improving. So, since her fevers are down and pain is managed, they say we may go home tomorrow-Praise God.
The Bad.....MG could still have an infection of her rods even though it was not found on the scans. She has gotten better on antibiotics that would treat this type of infection, so the question still remains: is she getting better because of a virus or because the antibiotics treated the infection? Only time will tell, she will remain off antibiotics and if she starts getting sick again, running fever, etc. in 4-5 days that would most likely mean she has a rod infection. Please pray for NO infection to return or for God to just rid her body of any illness and for her to remain healthy. We do not want to go down this road of months of antibiotics and rod removal.
The Ugly....We found out from our orthopedist here that MG has 2-3 broken ribs. The hooks where the veptr rods connect to the ribs have migrated through her little ribs. This was the biggest surprise of the day to say the least, but explains much of her pain. This information will be passed on to Dr. Campbell in Philly tomorrow and we hope to hear from him and see what his plan is for this. Please pray for wisdom and direction for Dr. Campbell in knowing how to best treat this, which may very well include surgery.
So, that is the day in a nutshell. God is at work and already gave us some answers we had been searching for. I have faith that He is not finished and we are praying for complete restoration for Mary Graham. Even with these complications with these veptr rods (and we knew eventually there would be some), we know they have helped MG so much already, and pray that we can continue on this journey with hope that God will guide us and be with us every step, just like he already has.
In the confusion and weariness of this week and all we have faced with MG, your support and prayers have meant so much. And we know the Lord has not forsaken us.....Please continue to lift her up.
"Call to me, and I will answer you, and show you great and unsearchable things you do not know." Jeremiah 33
I wish I could say we had a plan, but as of right now the doctors are doing their best to come up with one. As of right now, there is no clear evidence of where the infection is located....from her MRI, ct, ultrasound and bloodwork. If they knew for sure it was a rod infection, the treatment would be 6-9 months of antibiotics and they dont want to just assume that and start her on that treatment. Also, one doctor suggested her rods could have come loose. She is getting better, and is happier this morning. So we are thankful for that. However, we dont know if she is getting better because of antibiotics or just getting better herself. Most likely they are going to take her off of antibiotics and see if she spikes a fever or gets worse and that way they will know if the antibiotics are helping. They will also be talking more in depth with Dr. Campbell this morning and get his expert opinion too. MG's case in very unique, it has seemed that is the story of her life, so finding the right answers is confusing, even for the doctors. Pray that God will guide them to the best plan for MG.
We're growing more weary and just frustrated...but we know that God is in all the details. Pray for clarity and answers and just healing for her. Also, patience and rest in Him who is not surprised by any of this.
Today Mary Graham had her MRI, which happened this morning, so that was an answer to prayer that we didn't have wait all day. It went very smooth and she recovered great. They said she woke up and said "I want my passy." we also had the same nurse anesthetist that have had many times and who loves MG. The MRI did not show any infection, which was what they thought could be a possibility, mainly since she has already been on antibiotics for three days. So, now what? Even though no infection showed up on the mri, the doctors still believe the infection involves her rods. This is where it gets complicated in finding the best way to treat an infection. Well, the doctors are talking to Dr. Campbell and infectious disease to figure out the next step. She has improved a little the last few days, but got a fever today and is still battling pain, especially when we move her. We just want her to start feeling better so we can all go home soon.
I was thinking about that phrase, "it take a village to raise a child".... But in our case it seems like it should say "it takes a village to care for the Sheppards." I just want to say, that over the last 17 months, the love of Christ has been poured out on us. It wasn't more than an hour after being admitted to the hospital than others were asking how they could help with kids, food, etc. I'm always so humbled at the way you all serve us so much, so thank you. And thank you mostly for your commitment to pray for Mary Graham through all her ups and downs. I look forward to the day she understands more and can see how much God loves her through His people. But actually, I think she already understands a little.
Please continue to lift her up. Pray for healing of the infection and that the doctors would have wisdom and insight into how to treat her best. Pray for great improvement, no fevers and no pain, that has been the most difficult to deal with, her pain. We always, always covet your prayers. One friend texted me this morning and said, "I don't know what God is doing in all of this, but He is good and He loves you and MG" I couldn't have said it better.
Today has been up and down....Mary Graham slept well last night, although is still experiencing pain throughout the day, especially when we move her. Her abdominal ultrasound was normal and all the cultures and viruses they tested for have come back negative. Also, her inflammatory markers have gone down from Sunday and she has kept her fever down for over 24 hours. These are all good things, but still no answers to where her infection is located. The doctors still want to investigate a rod infection. So, she will have an MRI tomorrow, which I was just informed that inpatients go last....so it could be in the afternoon and not sure how long it will take.
Please pray for safety and her breathing during the MRI and a smooth procedure. Also, pray that if they find an infection it is early and can be treated with antibiotics, not surgery. The hardest part of this is that even though she has had a little improvement she is still hurting a lot. Pray for complete healing and trust in God as we walk yet another trial with MG. Pray for God to move quickly in restoring her health, as she was doing so well up until Sunday.
Thanks for all the prayers and encouragement.....your support is always a blessing. I will update when I can tomorrow.
So, you just never know what each day may bring....to make a long story short, MG started running fever, having diarrhea and pain saturday afternoon so we came to the ER on Sunday morning. Well, that turned into a whole lot more. Her white blood count and inflammatory markers were very high and so she has some form of infection. They are now trying to figure it out. They believe it could be in her rods, even after already doing a CT and ultrasound. Now we are scheduled to have an MRI on wed morning. She has been up and down, but has seemed to improve some today and is on antibiotics and fluids. Please pray for her and for her healing. Pray that it's not an infection of her rods and that she continues to improve. If it is an infection of her rods, it's a whole other can of worms in having to try and get rid of it and can involve removal of rods.
Thanks for all you prayers, hoping for good night and better day. Trusting in God and trying to just take it one day at a time.
MG riding the horse at Ronald McDonald House (pre-surgery)
Well, we made it home today after being discharged from the hospital last night. I do not think I could have asked for a better trip/surgery for us and MG. God truly blessed us every corner we turned and abundantly answered so many prayers. Thank you for praying us through this one. To have an experience like this in the midst of the long journey we have ahead of us with MG is actually encouraging. These trips can be tiresome, but we are so thankful for a treatment for Mary Graham's scoliosis and just ask you to continue to pray for no complications with her spine and good improvements. She is doing amazing, not too much pain today at all, mostly just when I move her. And of course, her sweet little spirit returned once we got out of the hospital-she still has some major fears. We will return again to CHOP in November for another expansion of her rods.
Also, a prayer request for some of you prayer warriors.....we met another sweet veptr family with a 5 year old daughter named Grace. She had surgery after MG on Tuesday to have her rods replaced. However, they found a mass behind one of her rods and are unsure of what it is at this point, could be a major infection. So, Dr. Campbell did the surgery, but she will be in the ICU for a while and her family is waiting results from the mass. Please pray for them and especially little Grace.
My eyes are always opened wider and wider every time we go to CHOP. But we trust in God's perfect plan for each of these children.
Please pray for us over the next month, we are going to start specific genetic testing for Mary Graham's muscular dystrophy, pray for peace and patience as we wait.
I had a hymn on my mind the whole time while we were gone, here are the words....
We rest on Thee, our Shield and our Defender. We go not forth alone against the foe; Strong in Thy strength, safe in Thy keeping tender, We rest on Thee, and in Thy Name we go
We are so blessed to have you all praying for us and MG, thank you so much. Even though we travel far away for these surgeries, we are never alone.
I had been told by many that the implant surgery versus the expansion surgery was like night and day....well, I believe it now. MG has done great today, she came through surgery beautifully, with no complications and Dr. Campbell was able to expand her rods about 1 cm each. Immediately she went to recovery and was in my arms after a few minutes already waking up. Today she has been sleeping most of the day and when we move her she is in pain, so please continue to pray for her pain to subside. She has already eaten some Mac n cheese and apple juice, and given us a few smiles.
So, although yesterday I talked about how everything seemed the same as when we were here in March, today has not...the difference is refreshing, encouraging, and just a huge relief.....and we are so thankful to all of you who prayed us through today. God has been with us every step of the way.
Praise God for a smooth day and please continue to pray for more improvements and healing.
"For you make me glad by your deeds, Lord; I sing for your joy at what your hands have done. How great are your works, Lord." Psalm 92:4-5
Deja vu has been the theme of our trip back up to Philly so far. We arrived yesterday with smooth travels and MG did great on the plane (this is always a blessing). The the Ronald McDonald house was full, so they got us a discount rate at the Sheraton (just like last time). Ate dinner at a local Mexcian place (just like last time). Then today, we had to be at CHOP this morning early for xrays, meeting with Dr. Campbell, bloodwork and anesthesia (just like last time). However, MG was hysterical during most of this, threw up all over the xray table...she remembers this place far too well. Being back at CHOP brought back lots of memories from MG's surgery in March, walking the halls, eating in the cafeteria, seeing familiar faces. Then this afternoon RMH house called and said they had a room open up and it was ours if we wanted (just like last time). So, off we go to the RMH and what do you know, we are in the same room out of over 40 rooms (just like last time :). I'm sitting on the same bed as I type that we spent those two weeks here four months ago.....so crazy. We are so thankful to get a room here though and have already met another veptr family, their daughter having surgery tomorrow after MG. And, honestly, all this familiarity makes me remember.....but I'm not thinking so much about the scary days we had with MG last March, but how God brought us through every step of the way. And I know this time is no different.....we have walked these same steps before and I can look back and know that God is still the same, he is unchanging and His faithfulness remains through the good and the bad. What a comfort to rest in these promises.
We ask you to pray tomorrow for Mary Graham, we will be at CHOP at 6:15 am, she's the first case. Dr. Campbell will lengthen both rods through two incisions. The surgery should last about 2-3 hours total, but the actual surgery is just about 30 mins. Please pray for a smooth procedure, no complications with anesthesia or her breathing (this is what I'm most fearful of because of all she went through last time) and for her recovery to be easy and with little pain. Pray also for us to have peace and faith that God has MG in his hands.
One cool story....right after we got to the airport in Birmingham an old friend of Lee's from Auburn saw us and called out to Lee (he hasn't seen him in over 10 years). He and his family walked up to us and he looked down at MG and said, "oh, is this Mary Graham? I've been praying for her." I almost burst into tears. How sweet that God would place them in our paths and what a encouragment to know people we haven't seen in ages are praying for her.
Thank you for continuing to pray-I will post more tomorrow after the surgery. Your prayers and support really mean so much and help us get through these more difficult and uncertain times.
Hope all of you are enjoying summer! Summer for us has been good so far, we have had some fun time at the beach and lake with family, sports camp for Loftin, art camp for Lucy, and all that's in between. Blogging has kind of fallen by the wayside, I started this a while back and have just added to it.....so it may seem a bit scattered, kind of like summer :).
MG has been happy and healthy and feeling good through it all. I can't believe it's been almost 4 months since her VEPTR implant surgery. We will return to Philly this Sunday for her first expansion surgery on Tuesday, July 24th. Also, we have an upcoming appointment this Friday with our neurologist here at Children's to discuss all the test results they have thus far on MG and her muscular dystrophy. There is still no definitive diagnosis of the type of MD, but I assume he will want to do some blood tests and possibly another muscle biopsy soon. The last couple months have been refreshing, as we have tried to focus on the present and how well she's doing, but of course, all that is coming in these next several weeks makes the realness return, along with the fears. Please pray for our travels and her surgery, it should be only about an hour long and a couple nights in the hospital, maybe just a week in Philly, if there are no complications. Please pray for no complications or sickness before then. Also, pray for peace as we learn more about Mary Graham and her MD. It's hard to digest it all. Pray for some hopeful and encouraging news from the doctors.
"How is Mary Graham?" I get this question a lot, sometimes multiple times a day....and I'm so thankful....so thankful that those of you asking are still concerned and praying for her. These days my answer is mostly, "she's good, really good, not in any pain." And this is true, but there is probably more I could say. I've been trying hard to get some video of her. Many of you only see her briefly and most of that is just in passing, some have never met her and only seen her in pictures. So, I have put some video of her together to show you the progress she has been making and hopefully get a glimpse of her little personality that is blooming. This is MG in a nutshell.....she is 16 months old and she is sitting up really well these days and beginning to reach further while sitting, she is talking a ton and can say, "hey there, mama, daddy, bye-bye, uh-oh" and many other words, new ones each day. Just today she said, "wa-wa" (water) and "flowa" (flower). She is not able to roll all the way over and push up to a crawl position, or sit up on her own. So, basically I have to place her in a sitting position, she can't get there by herself. She has just learned to stand up, while holding my fingers, from her little stool that she is able to sit on unassisted. This is major progress, right after her veptr surgery she wasn't putting any weight on her feet. She is very happy, rarely cries, but I can tell she is beginning to get frustrated and want to move more.....we have to carry her a lot since she isn't mobile yet. However, she is getting stronger every week and growing and we praise God for that. We try not to focus on what she "should" be doing right now and we celebrate these steps that she is making in her progress and continue to pray for God to show us great things through her. Mary Graham is just Mary Graham.....she makes us all laugh and smile a lot every day.
Just the other day, one lady asked me how old MG is, I told her 16 months and she commented, "bet she's starting to get into everything." This is where I don't know where to go with the conversation, so I said, "well not quite yet." This is where it gets kind of awkward, do I tell her about MG's disease, her surgeries, etc. Most of the time I don't and just pretend as though things are normal. Another time today a girl sitting next to me at the library with a baby the same age who was crawling all over the place, she asked how old MG was, I told her 16 months and she said her baby was too and commented how tiny MG was. As we sat there for a while, I know she was wondering why she wasn't crawling around like her baby. Then, as I watch Loftin and Lucy swimming and running and jumping this summer and I think, will MG ever be able to do these things? These moments, of course, are difficult and this is where I'm learning. Learning how to respond to these conversations, learning my own insecurities, learning to love her well just the way she is and not focus on what she "should" be doing, learning our "new" normal, and learning to follow Jesus through it all. You see, I have thought, and said to some of you, it is easier to face Mary Graham's muscular dystrophy at this point because she is a baby. She is happy, carefree and I'm the one taking care of her all the time. Some days I feel like everything is normal, despite her delays, and I catch myself thinking, "how could I really have a child with muscular dystrophy?" Plus, with Loftin and Lucy, we have lots of fun and crazy and joyful times these days, and I'm so grateful for these, even the ones when I think I'm going to pull my hair out with all these children :) But events like those above seem to sting and that's where the learning begins. Uncomfortable is how I begin to feel....I don't like feeling uncomfortable....I would much rather feel comfort each day of this life, wouldn't you? But when that comfort is shaken, that's when I long for more...shouldn't we all long for more than just a happy, comfortable life? I would love just to breathe a sign of relief that everything's going to be ok. But it is actually good for me to feel uncomfortable...and having an uncertain future for one of your children can put you there for sure....but it's good because I realize my dependency and comfort needs to come from the Lord. In Him I can find rest and peace and know that is really is going to be ok.
When going about the day, emotions come and go, but then I just look at her and she washes those away. God is showing me His goodness in the midst of it all. She's such a blessing, everything about her. And I have a feeling I will be learning from Mary Graham as she grows. There is much to be thankful for. This story really isn't just about my little girl with a disease, I'm learning that it is so much bigger than that.
This road ain't easy.......but two things I know to be true, that I'm learning and relearning each day.....as the verse says below....I believe in Him and He has given me an inexpressible and glorious joy. We rejoice despite our circumstances....despite our discomfort.
"In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire —may result in praise, glory and honor when Jesus Christ is revealed.Though you have not seen him, you love him; and even though you do not see him now, you believe in himand are filled with an inexpressible and glorious joy,for you are receiving the end result of your faith, the salvation of your souls." 1 Peter 1
I still believe that God has great plans for Mary Graham, better than I could have or imagine and I can't wait to look back one day and see all He has done.
There are so many things I could ask you to pray for...her future, her development, her surgeries. If you are still along for this ride, we are so grateful.....We covet your prayers and thank you for your faithfulness.
Now, if you have lasted this long reading my post, here is some video and a few pics from our summer.....do not feel like you have to sit and watch all the videos, it was just hard to capture everything on one...and my voice gets quite annoying on all of them :)
Eight years ago today, Lee and I said "I do"...although sometimes it seems like it should be eighteen years :) I mean that in a completely good way.....I hardly remember what it was like to not be married to him. God blessed me with an amazing man and I'm so thankful for him. I was reading back in my prayer journals from when I first met Lee and I prayed so many times, "dear Lord, please let Lee call me"...I remember seeing him for the first time when he picked me up for our blind date (which I wasn't not excited about, how many blind dates work out?!). When he came to the door, I immediately thought, I think I'm gonna like this guy and I did.
It's fun to think back to that time in our lives and how I love him even more today than I did on our wedding day. I kind of laugh when I look at this picture and see how in my mind I know I was planning our future, how I wanted it to look, how I thought it would look....but God had other plans, and His plans are better. When I look back over the last eight years, this journey has not been easy. But God has protected our marriage through all the ups and downs, and it has had many opportunities to be attacked....I would never want to go through any of these eight years without Lee by my side. He is a Godly man, a great father and devoted husband....if you know him, you know that he really is just that great. He is the best person for me. This is the verse inscribed on his wedding band and I continue to pray this.... " I thank my God every time I remember you. In all my prayers for all of you, I always pray with joybecause of your partnership in the gospel from the first day until now,being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:3-5
Happy Anniversary Lee, I love you!
Also wanted to share about our visit to Tallahassee this weekend where Lee's family lives. We had not been able to go visit with all MG has been through, but now was perfect timing. The best part was getting to go to the Sheppard's church on Sunday and bringing Mary Graham with us. How do I begin to thank this church and all the precious people I was able to meet, many for the first time, who have been so devoted to praying for her. I had so many come up to us and just tell me they have been praying, praying everyday for Mary Graham. When people don't know what to do or say to us right now, just telling me that you are praying is more than enough. We thank each of you for taking the time to pray for MG and God hears yours prayers and I believe he is going to do great things, He already has. Thank you for standing in the gap for us when we haven't know what to pray or even how to pray. I just read the verse in Luke on our way home, "Jesus spoke a parable to them, that men always ought to pray and not lose heart." It is easy to lose heart, so please do not cease praying. God is greater than all of our circumstances. We are honored and grateful for your love for us.
"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart." Hebrews 12
So, summer began for us over two weeks ago and it has been kind of crazy......without boring you with the details, every child has been to the doctor, some more than once and ended with MG throwing up all over the waiting room floor of the after hours clinic. But, everyone seems to be on the mend and we have actually had some fun this last week. It was quite a slap in the face way to "ease" into summer with three kids home for three months. (I know some of you mommas can relate). Right before it all began I was thinking about true daily living as I looked at my calendar full of things to do this summer. My prayer is that I will live each day, enjoy each day, or rest in the fact that God will grant me grace to get through the harder days. Well, week one was quite the test :) This week then began with me getting the stomach bug, yay...hoping our sick days are behind us now for a few months.
MG was having a great deal of right leg and hip pain, mainly after being examined by the doctor for a possible UTI. However, after seeing the orthopedist, having xrays, and talking with the folks at CHOP about a possible MRI, CT, etc (maybe in Philly) she has actually gotten much better and her pain has improved. In fact, I feel like the last two weeks she has been happier than she ever has been.....I'm SO thankful, we did not want to do more scans right now, we did not want to go up to Philly right now, and we did not want her to be in pain....so we have just prayed for the pain to get better, and it has. We praise God that none of this has to occur right now and we are praying she continues to improve up until we go at the end of July to CHOP for her first expansion surgery. She has gotten stronger and is sitting up unassisted for longer periods of time. We are so thankful, that despite these setbacks, she is making some progress since her surgery. I have some video of her I will post soon.
I confess over the last month of letting everything sink in from what our neurologist told us, I have been researching and researching. Trying to figure out things on my own...trying to have the control. But where has that left me, fearful and sometimes hopeless. Loftin said to me the other day, "Mommy, it's really hard to believe in God because I can't see him...how can He be real?" (Talk about a loaded question)......I just looked at him and said "I know, it is hard." That's not all I said, but I could relate to his little 6 year old mind. He wants to see what he is believing, don't we all? He also confessed to me this month "I really think I love Star Wars more than God" and his face showed that he wasn't even sure he should have said that outloud. I told him that God loves him much more than Star Wars and left it at that. Again, I was reminded that I have no control over any of my children, really only God does. Although Lee and I laughed and thought maybe we should cut back on the star wars :) But honestly, it was a good moment for me to surrender this control over to Him. I love that Loftin is asking these questions, thinking more deeply about our Lord and challenging me to think more deeply also. My prayer has always been that my children would grow to love the Lord. But, I must surrender every day these children that He has given us to love and raise and train and grow the best we can....and then surrender again and again.
The verse above has followed me around the last few years, especially while pregnant with MG, God showed it to me so many times and I had written it down several times too. Looking back, there is so much God was revealing to me during that time, preparing me, that I am just now realizing and I hope to share someday. But the words "for the joy" have always been my favorite. Jesus knew he would endure the cross, but he did it anyway...for us....for the joy set before him. And that joy, I believe, belongs to us too. Especially on the days when I am sad, fearful, weary, losing heart about the future, God brings me back to that joy. The joy that there is nothing in this world for me, the joy that our only hope is in Christ, and the joy that we don't even know about yet. He is the one that is the author and perfecter of our faith, just as I see him beginning to work in little Loftin's heart, He is chiseling away at mine too.....sometimes more than I wish. But, although painful, I know it is good. Especially in a world where so many are suffering, and I have seen it more and more around me these days.....God is at work.
Thank you for continuing to pray for MG and our family....please pray for her growth and development, for her upcoming surgery in July, for us as we wait for more tests results and learning more about her muscular dystrophy. Pray also for daily surrender. Happy Summer!
