Merry Christmas!

Thank you for the prayers yesterday....Mary Graham got her new cast and stitches taken out. Everything went very smoothly at Children's and we were home by 10:00 am. The doctor said her incisions looked good and the xray showed that the hips were healing properly. We are very thankful for that. She has a cool tye-dyed cast now and her legs are even further apart. We will go in a few weeks to have the cast removed, hopefully, and then she will possibly be in a harness.

Above, the little "chair" was made by my dad and so it has been great for MG to be able to sit up and not have to lay flat all the time. She loves it!

Hoping you all have a blessed Christmas and we are always grateful for each of you.

Mary

For the Mighty One has done great things for me - holy is his name. His mercy extends to those who fear him, from generation to generation. Luke 1:49-50

The verse above is out of the mouth of Mary, for soon she would give birth to Jesus. This is Mary's song.....she was already praising the Lord and although she knew He was to be the Savior, she had no idea what was to come....the cross. She would suffer the loss of her Son, but then the joy would come. Sorrow and Joy - they are inseparable. My favorite part of the song Mary Did You Know? says, "Mary did you know?....the child that you deliver, will soon deliver you." There was so much uncertainty and confusion before His birth, and yet He still came. Now, even in the midst of the chaos that comes with Christmas time or just life itself, what a powerful thought to know that in the midst of all this too.....He has come. 

How I long to have a heart like hers.

Never had I truly read these words and understood. Or maybe God is just revealing more of Himself. As I think back to this year and the journey with Mary Graham, the dark times and the uncertainty that has lingered, I can't help but think the Mightly One has done great things for me. This Christmas is different than I had pictured it to look. In fact, this year has been nothing like I planned. Expectations have been blurred. Honestly though, looking back, He has exceeded my expectations. I did not expect to experience the God of all comfort and mercy. I did not expect to see the light so much brighter after a dark day. I did not expect to grow relationships, not just those already in my life, but old friends and new ones that God has put in my path. I did not expect to see such great compassion and prayer through those around me. I did not expect to come to accept this trial after asking Him to take it away so many times. I did not expect for God to use this baby girl to draw others to Himself. I did not expect to feel the peace that passes all understanding in the midst of my fear. And, most of all.....I know Jesus more, deeper, even though I wouldn't have chosen this way....and I was not expecting that.

So this Christmas may be a little different, but we are so blessed. I hope you find the heart of Mary in the midst of whatever trials you are walking through, and I thank you so much for being so faithful to walk with us even when your lives are very full.

Thank you for continuing to pray for Mary Graham and our family. She is doing so well and I know that is because of God's grace and your prayers. She will have her cast changed on Friday at Children's. We pray for smooth and easy procedure.

Merry Christmas!

Things are looking up

Mary Graham has really turned the corner today. She slept through the night completely last night. Her appetite is a little bit better. The only setback was one of her incisions had started bleeding yesterday and got progressively worse. I was up a lot checking it and spoke with our orthopedist two times in the night. He met me this morning at the clinic. He changed some of the bandages and said it was nothing too concerning, when you are dealing with cut bone and muscles (yikes, could have done without knowing that). So, I am tired, but MG is doing so well that I don't really care. I had to post this little video. Hope you can view it. She can't move, obviously, but she twirls her toes and hands when she is excited. And today we saw some smiles. Thank you for praying, I know it is because God has heard your prayers. Thank you for standing in the gap for us when we are too tired to pray.

We are grateful for your prayers of healing.

This too shall pass

Our last few days in pictures....

Right after surgery

 Her new "ride"

Hanging out in the boppy

Thank you all for praying us through this, your prayers have been felt and we are so thankful the surgery is over and went smoothly. God has been so faithful and we praise Him for that. This is quite an adjustment for MG and us. She had a very hard time in the hospital with her pain and with muscle spasms that make it difficult for her to sleep. It doesn't help that she can't move anything but her arms right now. She isn't eating very well either. Things are just kind of up and down for her. However, last night she did a little better and she has had some moments of contentment. It helps to know this is helping her hips and that it's just part of the process. I believe each day she will improve more and more. 

Our orthopedist was pleased with everything....he made four incisions then lengthened some tendons, grafted some bone on her sockets and put her hips into the sockets. He said we will know over the next several months if the hips would form properly in the sockets. The plan is to go back on the 23rd (only two weeks away) and have her stitches removed and replace the cast. We will do this again under anesthesia, but it should be nothing like the surgery. Then hopefully if she is healing well, she will only wear it a few more weeks and then possibly wear a harness to keep her hips in the sockets. He did say that hip surgery is much more painful than spinal surgery-so I guess we can hope that is the case for MG.

Please continue to pray for MG's pain to decrease, her appetite to improve and for her hips to heal and develop properly. We are so grateful for each of you praying and helping us in many ways - bringing us food and helping with our other kiddos. Having such great support around us really makes these difficult times easier. Just taking it one day at a time....

Fires

"Because of the Lord’s great love we are not consumed, for his compassions never fail." Lamentations 3:22

picture by Alyce Manown

Had to share a little of how crazy things have been around here....looking back it seems to be the theme leading up to MG's procedures. Think God wants me to cling tighter.....

Saturday night I was sound asleep only to be woken up by Lee at midnight yelling, "get up, get up...we have a fire....get the kids, get the kids!" He had been watching tv and heard an explosion only to look outside and see a huge fire in the woods behind our house. He swung open the door to our deck from our bedroom and all I could see was smoke and could hear the crackling of the fire. Panic. I yelled for Loftin, our oldest son, and Lee grabbed the girls and we ran out the front door. As I turned around to look, the flames that were engulfing the woods behind our house were higher than the top of our roof. I was hysterical and quickly just started praying that God would save our home. We called our sweet friends/neighbors who looked out their window and saw the fire and we rushed inside. Soon the firetrucks came and we later learned that it was the garage of the house behind us, with many propane tanks that exploded. Thankfully the fire dept is right around the corner and got it under control. It shook me. As it was all happening, even in the panic....I was thinking about that word "consumed." And how quickly the fire could have spread straight to our house. We were very thankful that God protected us and we have even laughed some now, and if you know me well you can imagine my panic, which Lee said we may need to work on in the future in scary situations like that :)

 The very next morning at church our pastor used all these analogies about fires throughout the sermon. I looked at Lee and said "how strange." God knows how to get my attention. He spoke of how fires in the tree tops can spread so quickly and used a story about a firefighter who lit another fire in the forest to protect himself from the raging forest fire surrounding him.....the fireman used fire to fight fire and it saved his life. Then he shared the verse in Mark 1, "he will baptize you with the Holy Spirit," and how the Holy Spirit living in us is the only way to fight the fires of our life and not be consumed. His power lives in us. And the verse above I had written down the day before the fire....we are not consumed, because of His love.

Later that day Lucy, our 4 year old, got hit with the stomach bug and Mary Graham is fighting off a cold that we are praying doesn't get worse or postpone the surgery. Just enough for God to want me as close to Him as possible. The verse I have been reading constantly and praying for Mary Graham since last week before all this happened and it has more meaning now....

^"And the Lord will guide you continually and satisfy your desire in scorched places, and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.
And your ancient ruins shall be rebuilt; you shall raise up the foundations of many generations;
you shall be called the repairer of the breach, the restorer of streets to dwell in." Isaiah 58:11-12

Please continue to pray for surgery tomorrow - we are always grateful for each of you. Praise God who is the protecter and restorer. May Mary Graham's life be one that reflects this for many generations to come.

Not worth comparing

"Our present sufferings are not worth comparing with the glory that will be revealed." Romans 8:18

We are back from Philadelphia and there is much to share. First I want to say thank you for covering our trip with prayer- God truly walked with us every step- the flights were good, only a few kinks, the hospital and all the staff there are wonderful and MG was an angel. Thank you for being so faithful to pray for us and Mary Graham...I am asking you to continue since she is going to desperately need your prayers over the next several months and even years.

Dr. Campbell is the orthopedist at CHOP.  We sought after him (and God orchestrated all the details that lead us to him) specifically because he developed the VEPTR, the titanium rib rod expander. We were able to see him, get more xrays and some bloodwork. He is wonderful and compassionate and also had many great things to say about Dr. Killian, our local orthopedist - he knows him personally, which is very confirming for us.

Mary Graham's scoliosis is still getting progressively worse, the spine is starting to twist and her lungs are already being affected. He is going to share her case at their next conference to get other opinions, but he believes it is idiopathic scoliosis, which means the cause is unknown. However, we will go back up to CHOP in February for several more days for an MRI, CT scan, bloodwork and full pulmonary testing under anesthesia. Dr. Campbell sees many patients from all over the world for spinal disease and scoliosis, so we know we are in the right hands. MG's case is rare and concerning because it is so rigid and progressive....but much of what he sees, in the "world" he lives in, is rare and he believes she is a candidate for the VEPTR - in fact, that is really her only option at this point. So we are very thankful that God has lead us to him. He doesn't want to wait much longer, but would like for her to "beef" up a little before her VEPTR surgery. We have it scheduled for March 13th, right after she turns one. The surgery will last 5-7 hours, and he wants to put in two VEPTRs attached from the top of the ribs to her pelvis on either side of the spine. She will spend a few days in ICU, then a few more days in the hospital and then we will need to stay in Philadelphia for several more days until they feel she is able to fly home, so probably a total of 2 weeks. There can be complications.... infection, pneumonia, the rod breaking, etc...but we feel the benefits outweigh the risks. Then we will return every 4-6 months, for possibly many years, to do adjustments and see her progress, hopefully good progress.

Her hip surgery is still scheduled for Dec. 8th with Dr. Killian here at Children's. Dr. Campbell felt like that was necessary to go ahead and get that done first also. She will have a cast from the waist down for about 8 weeks with one change out of the cast in the middle on Dec. 23rd.

We are thankful to have a plan....a difficult one to say the least....but it's a plan. It has been very emotional and exhausting - every time we see a new doctor reality sets in all over again and I find myself consumed, fearful of the future and trying to cling to the present.

I have seen pictures of these surgeries, and it's very hard to imagine Mary Graham going through all this. But we know it has to happen to help her lungs and heart and overall health. I kept reading the verse about our present sufferings over and over, and the words "not worth comparing" kept coming back to me. None of this, no matter how hard it gets, can even compare to the glory God will reveal to us one day. And that is what matters most and gives us hope and perspective. We have no idea what God is doing, but from the beginning of all this I have remembered that His plan prevails and it is the best. And I have witnessed His faithfulness, even in the darkest moments. Honestly, this is probably the hardest and longest trial I have walked and keeping this perspective comes and goes. It's so hard at times. Thankfully we have a God who loves us and nothing can separate us from that love, even when we are consumed.

Please pray for these things...
For MG to grow and gain weight before her VEPTR surgery and to stay healthy - even a small cold can turn into more with her lungs
For Dr. Killian and Dr. Campbell and all those involved on Mary Graham's surgeries to have wisdom
Hip surgery Dec. 8th-for smooth, uncomplicated surgery and for her hips to heal quickly and benefit from the surgery
The upcoming testing in February at CHOP-for no new health issues to arise
Our traveling over the next several months
Our family, especially Loftin and Lucy and all the logistics of childcare and them adjusting to our traveling and being gone while we care for Mary Graham
The VEPTR surgery in March to go smoothly with no complications
For healing for Mary Graham and her sweet spirit to remain as she is the one having to bear this burden
For our faith to remain in Christ alone, for us to focus on the present and bring glory to Him

Again and again we are so grateful for each of you that are faithfully praying for MG and walking with us.

"Who shall separate us from the love of Christ? Shall trouble or hardship or persecution.....No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8: 35-39

Walking in Faith

"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” Isaiah 30:21

"So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:18

Where do I begin...the last 48 hours have been overwelming.

We met with the pulmonologist, who I love...he was Lucy's (our 4 year old) doctor when she was so very sick at 3 weeks old and he remembered us. He is the first one to come along and really take Mary Graham's case to heart and see a bigger picture. We are very thankful for him!

Mary Graham is having some respiratory distress from her scoliosis. Although it is not severe to need interaction yet, she is having to work harder to breathe than a normal baby at her age. This will be very important to monitor as her curve progresses.

After examining her and discussing the possibilities of fusion of the vertebrae or a VEPTR (rib expander) surgery, he did not think fusion was a good idea, at all, for MG. The fusion would be of at least 5 vertebrae, and her lungs would not be able to continue to grow properly and her growth would be severely altered.
So, he confirmed our decision to seek the opinion of the doctors in Philadephia and said he believes that the VEPTR may be in her future. It is not an easy fix, it comes with many complications. You can read more about the VEPTR by clicking here.

The pulmonologist was also concerned with the rigidity of her spine, neck and hips and has referred us to seek the opinion of a neurologist. Since we have yet to get some kind of diagnosis, he wants to explore more conditions, such as a neuromuscular condition. We will see the neurologist on January 6th.

Our pulmonologist also contacted our genetics doctor. I have been avoiding this. He is so willing to find answers for us! Like I said, he is a blessing, and we are so thankful that he will continue to be compassionate about helping us treat Mary Graham as she grows.

The chromosome study they did on Mary Graham had been lost (big surprise), although they were able to locate it. It showed that there is one small mutated gene on a chromosome. What does this mean? She isn't sure. It could mean something or it could mean nothing. Lee and I will go for blood testing to see if we contain the same genetic mutation and they will look further into if it correlates with Mary Graham's deformities.

So much to take in and process and so we ask you to please pray for the following things...
Mary Graham's continued growth and development
The genetic testing and findings....for a hopeful diagnosis
Our travelling to Philidephia and the appointments there
Upcoming hip surgery on Dec. 8th and the neurology appointment
Continued wisdom and dicernment for our doctors and for us
For complete trust in God that he is in control

Listening to God's voice in the midst of all that we are hearing from so many doctors is difficult. My brain can hardly comprehend it all. I have clung to the verses above that God showed me yesterday morning. And it has brought clarity to many questions and confirmation that we feel God is leading us on this path. But how do you walk when you can't see? This is the truly difficult part. It seems so blurry at times, especially on days like these. But if we could see, we would not need to have faith. Although we can't see where we are going, we walk in faith, clinging to the unseen.

We praise God for her progress and using His people to minister to us.  We praise him for walking with us and placing the right people and doctors in our path. We praise him for Mary Graham and the way He created her.

Thank you for loving us and supporting us.....we covet your prayers.

Pictures, Changes, and Prayer

 Mary Graham is 8 months old and SO happy without her cast on, as are we all! Lee and I were saying we didn't realize how uncomfortable she must have been, because she is smiling and trying to move so much more now. Here are some pictures of what we have been up to....been nice to have some normalcy for now. 

Pinkalicious and Darth Vadar

A little pumpkin

Please pray for the upcoming months. We have changed her hip surgery to December 8th. She will have a cast for about 8 weeks. She will go back Dec. 23rd to have her stitches removed and get a new cast, just in time for Christmas :) Needless to say we will have a very low key Christmas.

We are going to see the pulmonologist on Nov. 18th to get his opinion on whether he thinks she is a good candidate for the VEPTR (vertical expandable prosthetic titanium rib) or fusion. The VEPTR would help with lung development, while fusion is what we would like to try and avoid right now. Our orthopedist says she is too young for a growth rod.

We are going to Philadelphia right after Thanksgiving to see one of the top pediatric orthopedists in order to get more insight into her scoliosis because of her age and the severity. We pray for clarity after this appointment and the next step for Mary Graham.

Specifically we ask you to pray for Mary Graham's growth, motor development and that her scoliosis does not progress over the next couple months while we are treating her hips and making decisions.
Pray for her to remain healthy so these surgeries do not become delayed.
Pray for clarity about our decisions about her health and treatment and for the upcoming appointments to be beneficial and encouraging.
And please continue to pray for her healing, for us to focus on each day and not be anxious about the future.

It gets overwhelming to think of all Mary Graham will have to endure. But I trust that God is orchestrating everything, especially as I have seen all the appointments and doctors fall into place. This is not what I pictured the holidays to look like for our family, but we will seek to praise and thank God for His continued blessings....accepting what he lays before us each day. We are so thankful for each of you who are praying for MG and for us.

"The Lord is gracious and righteous, our God is full of compassion. The Lord protects the simple hearted. When I was in great need, he saved me. Be at rest, once more, O my soul, for the Lord has been good to you" Psalm 116

Ok

 "I remain confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD." Psalm 27

The x-rays from today's appointment showed that Mary Graham's cast was not correcting the curve in her back, it is still very rigid and stiff, and at about 50 degrees. So, they took off the cast. These were not the results we were hoping for, but I am thankful that I can hold and enjoy her again for the next few months "cast free," at least until her hip surgery. Already, she is SO much happier without it on. She is scheduled to have hip surgery January 19th and will be in a cast for about 8 weeks after that. We hope that this will improve the quality of her hips. We could have done it sooner, but decided to take a few months off to enjoy the holidays.

We are now faced with some tough decisions about her treatment for her scoliosis. First we will go to our pulmonologist to see how her lungs are developing and then get his opinion on whether to put a growth rod on her ribs or fuse the 4-5 vertebrae on her spine that are curved. The lung growth and development is most important right now. We plan to research these options and seek other opinions too. Because of the difficulty of her type of congenital scoliosis, the progressiveness, and her stiff back, it will be hard to ever have a straight back and grow normally.  But we remain hopeful in our God that can move mountains.

The book Jesus Calling today said, "If you focus on the obstacle and trying to remove it, you will probably go off course....instead focus on Me, the Shepherd." Then, the verse above was the verse of the day on biblegateway. I read this verse while sitting in the waiting room at the orthopedist office today for Mary Graham's follow up appointment and I knew......God prepared my heart then for what we were going to hear. This was one of the first verses I read when this journey with our then 8 week old baby began. Then, I thought it to mean, wait for test results....wait for healing...wait for appointments...wait for surgeries....wait for peace. Now, it still means those things but also it means much, much more....wait for Jesus. He really is the only thing worth waiting for and we hope to remain confident in His goodness. We have already seen it throughout this journey.

It was a very long day yesterday, a lot more to process and comprehend about MG's future. Honestly, I had not really known what to pray at that point. But later in the night, when I had some time to process my thoughts. The only word that I could really speak to God was "ok." Acceptance. No matter what. This is hard. But we will strive to just accept what God has laid before us and move forward. I am truly just focusing on the present. The future is where the fear lies, but the "dailyness" is much easier to tackle, because of the grace given.....daily grace. When I truly am focusing on Him and his light, this world and all of Mary Graham's issues seem to grow dim. These words were on my mind all day...

Turn your Eyes upon Jesus
Look full in his wonderful face
And the things of earth will grow strangely dim
In the light of His glory and grace

There is much to be thankful for....please continue to pray for wisdom with decisions, her growth, upcoming surgeries and for our focus to remain in Him alone.
Thank you again for coming along in this ever-changing journey, as I know your lives are very full as well. We are always grateful for those of you praying for us and Mary Graham.

Solid ground

"Jesus Christ is the same yesterday, and today and forever." Hebrews 13:8


Mary Graham has really adjusted well to her cast, especially these last few days. I have actually seen some smiles and we have been venturing out a little more. She is agitated and uncomfortable at times, but who wouldn't be? Overall she has been a real trooper these last few weeks and we are so thankful for your prayers for her. Next Tuesday (October 18th) we go for a one month follow up appointment with the orthopedist. Many scenerios have played through my mind about what to expect, but I honestly don't know. I think he will do x-rays with the cast on and we will see if she has made any positive progression with her spine. If not, maybe he will leave it on longer, or schedule to take it off, or replace it.....like I said, I just don't know. Since the doctor said that he is doubtful the cast will correct her scoliosis, I am anxious.

These last few weeks have seemed like a bit of a fog. But slowly I am beginning to see His light brighter than before. It is always hard going through darker days, but then His radiance is so much more beautiful coming out and I gain a better perspective. 

Feelings and emotions can be consuming....they are not reality....but controlling at times. So I have tried to return to the unchanging truths I know, even if I didn't really feel like it, trying not to base everything on whether we have a good day or not. Isn't that just life no matter what the circumstance? Thank goodness God remains the same, as we go up and down. The verse above has appeared many places this week and then I happened upon the second verse of the song "On Christ the Solid Rock I Stand," and have been listening to it ever since. God knows our needs and he provides.

We ask you to please continue to pray that the cast is healing her back. But also please pray that God will prepare our hearts and minds for whatever the doctor says. Since Christ is the same everyday, we want to put our faith in Him, not in what may or may not occur at appointments such as these. Pray for us to stand on Solid ground, not sinking sand.

Thank you again and again for the prayers, meals, cards, emails, (many from people I do not even know)....I am deeply moved and forever grateful.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.

I'm so thankful she can now fit in the baby bjorn, as in the picture, it has been hard finding ways to "tote" her around. Her legs do not go very far apart due to her hip issues, but now that she has grown, they can go just far enough apart to put her in this.

Thank you for the prayers!

Coping

Thought I would share some pictures of Mary Graham in her new "outfit." She has adjusted pretty well, not too many smiles yet, but I'm hoping they will come as she adjusts. The look on her face in the pictures is about how she looks most of the time, like she's saying, "What did you do to me?" She seems to be uncomfortable and in pain at times. She can't be in a sitting position, so lying down or straight up and down seems to be the best position for her.

She is sleeping well, which is a blessing, but her eating is not too great right now, she has spit up lots-so just trying to figure all that out. It's kind of like having a newborn again, we may be homebound for a while-so come visit :) Just taking things one day at a time.

Thank you for the continued prayers.....



Trying the exersaucer

The boppy seems to be her favorite

With a shirt on, she looks like a little linebacker

Here's where we are....

Thank you, thank you for the prayers today....I have never experienced the work of Christ so evidently through His people as I have this week. You have been a blessing and I have felt the peace of God all around. The emails, the cards, the calls, the verses, the offers to help us....we are so grateful and I have no words to express how overwhelmed and humbled I am that you are choosing to pray for us and Mary Graham.

Her cast procedure went smoothly and we are now home. We are so thankful God protected her. She is pretty uncomfortable and it will take some time to get used to it, as it is rather heavy and bulky. But we continue to pray that her sweet spirit will remain and God will calm her as she (and us) adjusts to this new change.

The orthopedist came and talked to us after the procedure. He told us that her back is still very stiff, even under the anesthiesia, and he is doubtful that the cast is going to correct her scoliosis....so this was pretty discouraging to hear. It is still going to be very hard to fix as she grows. So, he wants her to remain in the cast for a month and then we will reevaluate her response to the cast and make a determination as to whether additional casting would be beneficial. If not, the other options may include a couple of different surgical procedures - - a growth rod or fusion of the (back) bones, both of which would have some complications.
However, he did a special "dye" test on her hips and he said they appeared better than they had in the MRI taken a few months ago. So, he wants to do surgery in a few months that will involve adjusting her hip ligaments and bones to hopefully create a type of hip socket.  This type of surgery would result in MG being in a cast from her chest down and both legs (for a few months).

Kind of a lot to absorb in one day!

So, here is where we are......tired, relieved, thankful and a little disheartened about the future. Please continue to pray that the scoliosis will be corrected in her cast, that we adjust to it quickly, and for clarity for the upcoming decisions about her treatment.

The verse I have held to from the beginning of all this...
"Call to me and I will answer you, and show you great and unsearchable things you do not know." Jeremiah 33.3

Pray that we look to Him for the answers and our faith holds strong during the storms. He is mighty and can calm the storms and we ask you to continue to pray for her healing. We rest in our God who knows what the future holds for MG even though we don't. Our hope remains in Christ and we continue to praise Him, even when it's tough, and are so thankful for Mary Graham's life.

Details and Beauty

"He is before all things, and in Him all things hold together." Colossians 1:17

We met with the orthopedist again this week to discuss the casting procedure. He gave us more details and showed us a picture of an 18 month old with a body cast (not fun to see, but we know this is the next best step). I am confident that this is where we need to be with Mary Graham. I had reached out to another doctor in Boston, sent him all of her xrays and he wrote me an email (and he didn't have to do any of this) saying he thought we were "on the right path" for her right now. God gave me peace through these words because I have so often prayed that our path would be clear.

The cast will go up to her chin, around her body and possible around one leg. She will wear it for 6 weeks and then have xrays done to see if it has helped correct her scoliosis, which is about at a 48 degree curve. Then they will probably leave it on for another 6 weeks, possibly take it off after that and maybe put another on if it's helping or talk about bracing. So a lot of "what ifs" "possiblys" and "maybes." We asked "what if it doesn't help the curve?" and he said surgery to fuse some bones may be the only option. So, we ask that you please pray for the cast to help in correcting her curve despite the difficulty with her back being rigid and tight. We know God can move in mighty ways.

The verse above is so comforting these days when I don't seem to have it all together-at all. He does and is holding it all together. The doctor spoke of Mary Graham's condition being rare, but I know it is not "rare" to God, he knows her fully well. Often I feel consummed......just wanting my mind to rest from thinking about my circumstances with MG. These are the circumstances that God wants us in and it only keeps me running back to Him. Lately I am so struck by many suffering around me, but able to see God's hand weaving a beautiful tapestry. To see life through the lens of Christ is to see this ugly world made beautiful. And I am beginning to see how beautiful she is, more than just her sweet smile and big blue eyes, and how I wouldn't change the way he made her for anything. God is using this tiny baby to change lives and point them, especially me, to Jesus....and that is true beauty.

We are so grateful for your prayers. Please continue to pray for healing for Mary Graham and for God to be glorified through her life and ours.

Cast and Clinging

Mary Graham will have her cast procedure on September 22nd. Please pray for a smooth procedure, the anesthesia and for it to be successful in stopping the progression of her scoliosis or even improving it. We will spend one night at Children's and learn how to care for her with the cast. This will be a new adjustment for all of us, I am anxious. Please pray that she adapts quickly.

The last few weeks have had their ups and down, at times full of frustration in communicating with doctors. This is a learning process, as we try to be the best advocates for Mary Graham. It can be overwelming and we often feel uncertain about our decisions. And I find myself trying to carry this load again. Then today, both my devotion books were the same story of Abraham's amazing trust in the Lord with his son, Issac. In fact, the first words of the book "Jesus Calling" say, "Entrust your loved ones to Me; release them into My protective care. They are much safer with Me than in your clinging hands." I want to cling. But she is best in His hands. There is nothing more difficult than to fully trust God with your children. God says in Hebrews that "Abraham obeyed and went, even though he did not know where he was going." So even in the confusion and unknown, we must move forward and trust. Please pray for greater trust in Him alone.

Today in the car, I heard my 5 year old, Loftin, say from way back in the van, "Mommy, Mary Graham is smiling at the sun." Immediately, my eyes welled with tears because I suddenly pictured her smiling at the Son, at Jesus. It was such a sweet moment that God allowed me to see His goodness and know that He has her in his hands and how thankful I am......He is clinging and she is smiling.

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever. Amen." Ephesians 3:20-21

We are so grateful for your prayers and we know He can move in mighty ways.

Press On

"Press on" were the first words that came to mind after I hung up the phone with our genetics doctor today.  She took her time to talk to me and try and answer as many questions as she could. She had received the urine results and most of the urine analysis seemed normal, except for a few "bands" (whatever that means) that were abnormal, which could be caused by several different factors. But we are very thankful for some of it being normal. However, she has ordered the urine test again....yes, again. It took us many attempts to get this the first time until they finally got it during her MRI, so we will probably wait until her cast is put on and she is under anesthesia to have it drawn again. Furthermore, our genetics doctor wants to have a chromosome panel test to look more closely at MG's genetic makeup and these results can take over a month to come back. 

We are still awaiting the date set for Mary Graham's cast, which we should know next week. Our orthopedist wants to review all the results, MRI, etc. and then move forward with the cast.

So, we will just press on and wait some more and pray for good results. Please pray for the urine test again, the chromosome tests, the cast, and very importantly, for MG's growth. She is very small and although she has grown, she is hovering around her same weight for a while now.

Honestly, although days like today can make me very weary, I am hopeful and calm. I have come to accept the waiting.....I can rest during these times, and it is refreshing to just go about life as normal. But it's speaking with the doctors that brings it all back to reality again. The story of when Jesus calms the storm has been on my mind this last week as I have been listening to that song, Be Still my Soul. In fact, I was looking it up last night and it didn't take me long to find it, there was a random piece of a sticky note right on the story in my bible, like it was already marked for me. I have no idea where it came from. However, I do not believe this was random, God is in the details. God's power in this story, the waves and winds obeyed....He calmed the storm by just speaking, just His voice. Every line in this song is amazing, but the second verse has struck me more lately...."be still my soul, the wind and waves still know, still know. His voice who ruled them while He dwelt below."

His power remains. His faithfulness remains. His voice remains. And I must remind myself of these truths daily when the doubts come. There is much to be thankful for....please continue to pray for Mary Graham's healing. We are so grateful for your prayers and encouragment.

Here is a youtube video of Be Still My Soul with the lyrics:
http://www.youtube.com/watch?v=c9zHn4QSH-8

A pretty cool story

Yesterday I took Mary Graham to the pulmonologist in order to check on a spot found on her left lung during the MRI. My pediatrician had not been too alarmed by this and said since she wasn't showing any signs of congestion, it was probably nothing. Nonetheless, he wanted to have it checked since babies with scoliosis can have respiratory problems. We prayed that the spot would be gone, and it was....praise God! MG is going to continue to see the pulmonologist, which I don't mind, because her doctor happens to be a good friend from sunday school, Grace. Grace is wonderful and it is always nice to be seen by someone I know amidst all these doctor appointments.

Here is the cool part....
We were called to the nurse triage area first to have Mary Graham's weight, height, bp, etc. done by a young, sweet nurse. As I'm sitting there with MG in my lap, another older, "grandmotherish" nurse was on her computer next to us. She turned around and was talking to me and MG and asking if she was always so happy. The nurses were both saying that most babies are crying when they have all that done and I told them that Mary Graham is a sweet, content baby most of the time. I was just about to tell them about her health issues, but got distracted as the nurse was trying to take her BP. Then, quietly I heard the older nurse whispering and I looked over to see that she was looking right at Mary Graham....she had lifted both hands towards MG and was saying "Jesus, Jesus...thank you Jesus"...she whispered some other things too that I couldn't hear..... she was praying for her. It was then that I told her that Mary Graham had been through a lot in her little life, about the scoliosis, her hips and genetic testing we are awaiting. Right then another patient came in and the older nurse began helping him. But a few minutes later before we were done, I caught her eye again and she looked me in the eye and whispered to me "it's going to be okay, she's going to be okay." My eyes welled up....I wanted to run to her, burst into tears and say "do you really think she will be okay?" but I just mouthed "thank you" and went on to our room. I never saw her again after that.

So, take that for what it's worth, but I am certain that God placed me there purposely at just the right time. Not that I think that nurse has some spiritual insight or anything crazy like that....to me it was just a sweet moment of God's sovereignty over all of our lives, step by step, moment by moment. Maybe that nurse does that with all the patients that come through, I don't know....but I do know that her prayers were heard and I praise God for moments like these in the midst of this uncertain journey.

More stuff....more prayer

We met with another orthopedist this week and have some specific prayer requests as the next few months unfold....

Mary Graham's scoliosis is not your typical run-of-the-mill scoliosis that is generally seen in babies of this age in that her back has a significant amount of rigidity - which will make treatment challenging (and probably quite lengthy).   The orthopedist wants to try a cast when she turns six months old. The cast will go all the way up to her neck, around her torso and around one leg to hold it in place. Our prayer is that the cast will help stop the progression and may possibly improve her curve. Please pray that the casting will be successful and for other future decisions about treatments.

Mary Graham's hip sockets did not form properly and there isn't much they can do right now. Later, and I'm not sure how much later in life, she will most likely face more surgeries to correct them. However, the orthopedist said children learn to adapt and, although with some delay, she will most likely crawl and walk.

Genetic testing is still in progress.....we are awaiting the urine testing that will take another couple weeks to point them in the right direction as to Mary Graham's condition or disorder. We continue to pray that her diagnosis is hopeful, treatable and non-progressive. After the urine results, the orthopedist will then schedule the casting. He wants to have more of an idea of her condition before doing that. Even if we don't have a definitive diagnosis after the urine, it sounds like they will have a better idea of what we are facing, and may then do more specific genetic tests (which can take months). We also ask you to pray that no new issues arise with Mary Graham as she grows.

We are also beginning physical therapy. How thankful we are that this is available in helping us to help her. Mary Graham is also a very happy, content baby and this will help her with all she has to face.

As we are beginning to grasp more of the longevity of Mary Graham's treatments and such, it is a overwelming reality to face at times. God has entrusted us with her and we are so thankful for the way he made her. Again, I just try and walk this path daily, not looking too far ahead, trying to let Him go before us. I know he can do immeasurably more than we can ask or imagine...I have witnessed this in my own life, but the doubt still comes. We ask you to pray for daily strength and endurance. The verse from Hebrews 12 has been on my mind, I've been meaning to look it up - well it just happened to be the verse of the day on bible gateway. "Let us run with perserverence the race marked out for us." It is already marked out for us, how we choose to run is up to us, but thankfully God says we are not alone.

There is much to be thankful for and I continue to hold tight to the promises of restoration in Jeremiah 33..."Call to me and I will show you great and unsearchable things that you do not know."

I will update when we get test results and a date set for the casting. We are so grateful for your prayers.

Believing before

I debated whether or not to update quite yet because we have not spoken to MG's neurosurgeon or genetics doctor since the MRI, but wanted to share what we know so far. I did speak to the genetics nurse and she was able to read the radiology report from the MRI and actually email the findings to us. It appears that there were no significant findings about her spinal cord. The main thing they were looking for was a tethered cord or some other issue of the spinal that could be causing the scoliosis. To be honest, I am both relieved and a little discouraged. I know this may sound warped....but if one of these things had been found, it would have been more definitive....a solution to the problem. However, we are trusting that this IS good and God knows what is best for Mary Graham. And we are so thankful that God protected her during that procedure. We may receive some more information about the MRI after speaking with the doctors.

So, now what? We continue to wait. They were able to collect a urine sample during the MRI to start a 2-3 week test that involves trying to narrow down what kind of genetic condition MG may have. Also, we are still considering options for her scoliosis treatment, which is the most important focus right now because it is progressing. We should have much more information about these options this week.

There are many ups and downs right now. But God is ever so present. I read my devotion this morning about the children of Israel after they crossed the Red Sea, it says in Psalms that "then they believed his promises and sang his praise." So they didn't believe in God's promises until after they saw His work. Hmm, sounds familiar....me. But he wants me to believe before....no matter what the circumstances. In Psalm 27 it says, "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." God has already been so gracious to let us see his goodness and His work. But in the land of the unknown (which is really where we all are, right?), I want to trust and believe before and not doubt Him and his love in circumstances of life.

We ask you to pray for upcoming treatments and tests results that are unknown at this time and that God would go before us to prepare the way. I will update this week as we learn more. There is much to be thankful and praise Him for and we know His perfect plan prevails.

Ah, then the next verse I read after all this...."You do not realize now what I am doing, but later you will understand." John 13:7

Thankful that we have a God who goes before...

MRI is done

We are home from Mary Graham's MRI and it went very smoothly...praise God. Going back to try for the second time made us very anxious, but the Lord's hand in it was so evident......When we arrived at 6:00 am our genetics nurse met us there (she went out of her way to do this) to make sure some special labs got done while MG had the procedure. We were also then greeted by a good friend's sister, who we were not expecting, and she checked us in. Then after being taken to our room, the same anesthesiologist and nurse anesthetist that Lucy had for her eye surgery in May just "happened" to be assigned to us. They were wonderful and were well aware of what happened last time and said they were prepared. The nurse gave me a huge hug and said she had prayed for Mary Graham last night and this morning and just knew God was going to protect her. After they got her under anesthesia, the doctor came and found us in the cafeteria to tell us it went beautifully and then the MRI went off without a hitch. And, while we waited, a good friend from church came to visit us. She is doing great now and doesn't seem to be feeling any effects of her procedure. All of these things were blessings from God and took away so many of our fears. How gracious is He to be in the small details.

I kept reading the verse, "I will help you, I will uphold you with my righteous right hand." He did just this.

Thank you so much for praying....we will wait now to hear back from the doctors about the results. Please continue to pray for our anxious hearts, for a hopeful diagnosis and healing for Mary Graham.

MRI and other things...

Was going to wait until Thursday to update, but we have had a little more develop with Mary Graham and have a few prayer requests. We spoke with our orthopedist this week after he had reached out to several other orthopedists in and out of town.  We have been given some options about her treatment and we ask for prayers in this process. God is walking beside us and He has already shown us steps to take in this process. "If the Lord delights in a man's way, he makes his steps firm...the Lord upholds his hand." Psalm 37:23-24. Please pray that we would have clarity and firm steps as we make decisions about her treatment and for wisdom for the doctors. We also know things can change as we still haven't finished all the testing about an underlying condition she could have. Pray for us to stay clear minded as we process things as they seem to be constantly changing.

Although the things around us are changing, I am comforted in the fact that God is unchanging. He is showing up in some amazing ways to me as I have prayed to truly "see" Him in all of this. I could go on and on. The worry and fear that comes with caring for children can be unbearable at times. God has constantly been calling me back to Him, driving me to increase my faith in Him, not in this world.  A devotion book I read this week said, "As you thus affirm your faith, shackles of worry fall off instantly. Enjoy my Presence continually by trusting me at all times." Shackles....a word that keeps coming back to me and lead me to listen to a song I haven't heard in a long time, "Shackles." The words say, "Take the shackles off my feet so I can dance...just to praise you, praise you through this circumstance." Then again today, my devotion book was asking, "what are you being shackled by?" I think God wanted me to SEE this word. It's almost like I can physically picture this, when I walk around with a heaviness at times. He wants to remove these shackles, to lift this load and I can praise Him. This is a daily choice to let him remove them.....but why would I want to carry them around? I want the control, I don't want to let go. But I don't want to be bound anymore. And there will be new shackles, but I will choose to let him take them today. There is much to be thankful for and I am seeking to praise Him.

Thank you for your prayers and wrapping us up in your love and support. God's love for us has been so evident in this last week through others, it is overwelming. Your phone calls, emails, cards, or even just saying you are praying is so humbling and we are forever grateful that you have chosen to walk with us. I know others of you are suffering in great ways and going through trials of your own. After running into a dear friend who is walking through some very difficult trials, she encourged me with the verse in 2 Corninthians "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all Comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." How amazing that God created us to bear each others burdens and I have witnessed this so beautifully in you.

I will update tomorrow after the MRI.....we covet your prayers for Mary Graham.

Burdens and Blessings

Today we went for a follow up appointment with the orthopedist. This appointment was originally supposed to follow her MRI, which did not happen in June, but we went today to gain more insight from the orthopedist. It seems as though these appointments are not following in order as they should, but I'm trying to trust that God is truly ordering our steps in this process, because it is getting more and more complex.

To sum up the appointment (I will do the best I can to explain this clearly, although some of it is confusing for me, so bear with me) they did further xrays and found that her scoliosis has progressed in the last two months. The doctor is concerned because she is so young and it's progessing rather quickly, as this can begin to affect other organs, and surgery may be the next option for her. He is going to begin speaking with his partners in the practice and making several calls this week to Boston and St. Louis to other very experienced orthopedists for guidance in her condition and we would most likely go elsewhere for the surgery. He mentioned the option of placing a growing rod in her back as one of the surgeries that could help stop the progression as she grows. We should expect to hear from him in a few days. Also, her hip dysplasia is significant, meaning both hips are dislocated and her joints are rigid so they do not easily bend or move as an average infant's hips would. At this time, he's not sure whether these hip issues can be treated.  But, he said most infants can adapt and learn to crawl and walk with some delay in this skill even with this condition. Again, these are things we won't know for a while.

The orthopedist said this plan could all change once we have the MRI and learn about those results. The spinal MRI will look more closely at the soft tissue and muscles surrounding the spine. If there is a spinal condition that requires surgery, we will go down that path with the neurosurgeon. If there is no spinal condition, we need to narrow down the disease/condition that Mary Graham has so the doctors have a clearer plan of how best to treat her.

So, we left today with a lot more "what ifs" and seeing all the different turns that this could take us, but still no definitive answers. Honestly, trusting God becomes all the more difficult on days like this, to not hold on or analyze every word the doctor said, try and make sense of it and process it in my mind. What does her future hold? I looked down tonight at a piece of paper sitting on my counter with the verse in Genesis my kids are learning at summer day camp..."God looked at everything He had made, and it was good." Again, I try and return to His word, His goodness and promises. Ugh......but my emotions go in the opposite direction. 

Earlier this week I read about burdens being a blessing. I always have just thought of the pleasant things as blessings, not something in my life that was hard. This was the quote from Frederick Faber "No matter how overwelming, any burden God has loving placed with His own hands on our shoulders is a blessing." So, this burden, our burden, God has given to us out of love. And because it is given by Him, it really is a blessing, because He is good.

As I type these words, I feel His peace, even though I don't understand and even if I am squinting to see His goodness today. I pray that we would see the blessings, the good and the bad, in all of this, especially on days like today, because more uncertainty will come.

Please continue to pray for a hopeful diagnosis and healing for Mary Graham and her upcoming MRI on July 21st.

Her precious smile brings me great joy throughout the day and thought I should share it with you. She is a blessing....thank you so much for praying.

Prayer and Encouragment

Today we went with Mary Graham to meet with a pediatric neurosurgeon.  A neurosurgeon specializes in spinal and brain issues.  This was originally scheduled to be a follow up after the MRI, which you now know didn't happen last week. But our genetics doctor told us to go ahead and meet with him.  I am just trusting that God is ordering everything now that things have been changed around from what we were expecting.

Not knowing what to expect and realizing we may not get any answers regarding her condition, it was a good appointment.  Lee and I both really liked the doctor and he was so clear and answered many of our questions. He went into some detail about some conditions of the spine that MG could have, some more serious than others, but he didn't spend too much time on that. He needs the MRI scans to really know what is going on with her.

I had one prayer for this appointment - that we would hear something encouraging. God answered. The neurosurgeon examined her and told us that her eye contact and facial expression are excellent, which he said is a sign of intellect in an baby her age. She smiled and cooed for him and I'm so thankful.  Although it may seem small, it was huge in my book. God's goodness is evident even in the smallest things.

After today, I have really been overwelmed with the prayers and support for Mary Graham and our family right now. It feels like you are carrying our burden with us and you have been so encouraging when I needed to be lifted up. So, if you are praying for her, thank you....I wish I could thank you all face to face....it means more than you know. I have witnessed the power of prayer and know God hears us. For each of you, I am forever grateful.

So no more appointments for the next few weeks until the MRI. Hoping for some rest until then, after being emotionally exhausted this last week with the ups and downs, and for God to continue to prepare our hearts and minds for what is to come.

"Call to me and I will answer you and tell you great and unsearchable things you do not know." Jeremiah 33:3

Promise of Restoration

The verse that has hit me so deeply throughout Mary Graham's sickness came a few days after the MRI didn't happen as we had expected, calling various doctors and becoming rather frustrated because I seemed to know more about her condition than they did at times. God says in Jeremiah 33:3 "Call to me and I will answer you and tell you great and unsearchable things you do not know." As I continued to read more of these verses it goes on to say how Jeremiah was confined in a courtyard, trapped and helpless...But the Lord speaks to him and tells him to call on him. At times I have felt trapped and helpless-especially because I can't help MG right now. I can't fix my child. But God knows great and unsearchable things, and believe me, I have searched and searched to tried to find the answers on the internet, which has only left me in tears. He can restore her and I need not trust in anything but His perfect way.

As the Lord continues to speak to Jeremiah he talks of the promise of "health and healing and let his people enjoy abundant peace and security....and will rebuild them as they were before...and his people will bring joy, praise and honor before all the nations of the earth that hear of all the good things (the Lord) does for it. They will be in awe and tremble at the peace I provide. Give thanks to the Lord, for He is good, His love endures forever." I pray for that peace that makes me tremble that only God can provide. I don't know what God has planned for MG and her life ahead, but I know he can restore her health if he chooses to. But, as difficult as it is, I will praise and thank him for his goodness and his promise to restore all that is broken in this world.

I admit, some days are hard, I want to be on a different path but I am praying that God will continue to show me great and unsearchable things through Mary Graham. He knows what her future holds and that should be enough.

The Words of Men

After having some discouraging phone conversations the last week with some nurses and doctors about Mary Graham's hips and spine condition and if/when it is treatable, I was very troubled. But that day, immediately God led me to the words of Amy Carmichael, "Do not be weighted down with "flying words".  Do not expect your peace to come from the mouths of men....or penetrate your shield. But the Lord our creator knows! Let not your heart be troubled. Don't you know that I understand what you are suffering? What do men's words matter to me, or to you?"

I have been searching for my peace in what the doctors tell me, hanging on their every word, who wouldn't, after all, they are the ones who should know everything. And, of course, we do pray for wise doctors throughout this process and that God will work through them and we know He will. But my peace can not come from what they say or don't say, and we are hearing a lot from all different sides right now and many things are being lost in communication with one another. But, God stands firm, he is unchanging...."when my world in shaking, heaven stands." I am so thankful for our doctors and nurses who are doing their best to know what is wrong with MG, but I am most thankful for the Greater Physician who already knows. The sign in her room that was painted long before she was born says, "I knitted you together in your mother's womb. I praise you because I fearfully and wonderfully made. Wonderful are your works, I know them full well."

Wait

We are still waiting on a diagnosis. And we waited a month for the spinal MRI to happen on June 22nd and many were praying for Mary Graham. Well, God had other plans that day. They were unable to do the MRI because of her neck, she can only turn it to one side. They didn't want to force the tube down her throat and risk injuring or infecting her throat. So, they didn't go through with it. Instead it has been rescheduled for July 21st, where they will prep her in an OR so they have the right tools to intubate her and then take her down to MRI.

I was totally surprised when the anesthesiologist came out and said the MRI wasn't going to happen. But I felt immediate peace that God didn't want it to happen and He had a reason for it. The first verse I read that morning was from Psalm 127:  "The Lord will keep you from all harm-he will watch over your life."  I recited this over and over and God did just that, he protected MG from harm when they weren't able to do the procedure and maybe he protected her for reasons we may never know. Regardless, I know it was disappointing not to have it, but I was totally able to trust that God needed us to wait another month. He showed me this verse in Psalm 27, "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord, be strong and take heart and wait for the Lord."

So, we wait some more....and I am choosing to trust in His goodness through all this, even on the hard days. I have given up trying to plan, because His plan prevails and is best.

Satisfy

When all of this came about with MG, I said to myself  "no, no... this is not happening to me and my child." I really was in disbelief for the first two weeks and was so, so fearful and I still am at times. Fearful for MG's life and the difficult road she may face. And at times, I admit, even angry. I have grieved the loss of my dream, the dream of my perfect family and children and the plan I had for them....but God's plan prevails and it is good.
     
As we sat in the waiting room of the orthopedist's office at the beginning of all of this, I began to read the verses in Philippians "be anxious for nothing, but by prayer and petition, with thanks, present your requests to God..." A verse that I had read many, many times in times of fear. But that day I continued to read through the chapter where it says, "for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation." That is where I shut my bible. No thanks, God. I really don't want to go there. I don't want you to teach me what it's like to be content in ALL circumstances. I don't want to go down this path.  I was looking forward to a pleasant, easy life. As I read the words of Amy Carmichael, she speaks of accepting your circumstances, all of them. When are you really ready to accept all that God has put before you and open your hands and say, "Dear Lord, yes." I was saying, "Dear Lord, no."

We would begin to listen to doctors, nurses, specialists and I would search the internet, the internet.... a good, but dangerous place to go. One of the first verses God showed me in Proverbs says, "Listen to advice and accept instruction, and in the end you will be wise. Many are the plans of a man's heart, but it is the Lord's purpose that prevails." And I would return to this verse over and over again, knowing in my heart that His plan is best and it is good. It may not be what I want, but I will walk that path, even if I don't like it some days.

Satisfy. A word that kept coming to my mind and then seeing it throughout scripture...."with a long life I will satisfy him and show him my salvation"..."satisfy me in the morning with your unfailing love"..."my soul will be satisified as with the richest of foods, with singing lips my mouth will praise you." I hunger and thirst for something else, something that only He can fill, not this world. The song "Blessings" by Laura Story (if you haven't heard it, you must) says, "What if my greatest disappointments, or the achings of this life is the revealing of a greater thirst this world can’t satisfy." There was that word again. This world can't satisfy me, although I want it to at times and God does bless us in many ways here...but I am thirsting for another world, one that doesn't disappoint. Isn't this where God wants us to be? To remember, daily, that this is not our home, and for that I am so thankful.

This trial, and there will be more to come, is revealing a greater thirst in me and I know only He can satisfy. Again, Amy Carmichael (my best friend these days) says "He has allowed me to come into these humbling circumstances so that He may feed me, not this world." Allowed. Someone just told me that if we could see all that God was doing in our lives during difficult trials, we would pray for more.

Mary Graham

My husband and I prayed and prayed about having a third child and God blessed us with Mary Graham. After I had her, I truly was obsessed with this precious baby, I guess knowing that she was probably my last baby and trying to enjoy her. All I wanted to do was hold her :)

Well, she is almost 4 months old and much has happened in her little life. I began to notice some things about her back not being even, her legs not quite right and her muscles seemed tight. So, after taking her in for a virus one Saturday, I mentioned these things to the doctor and he immediately became concerned. We were sent to see an orthopedist and there he diagnosed her with severe scoliosis and significant hip dysplasia with high muscle tone. We were then told to go to UAB genetics, which can take weeks to get in....we got in in 2 days. That was over two months ago. We have met with the genetics doctor and have had other xrays done and are now awaiting a spinal MRI on July 21st to show more about what kind of condition she could possibly have. It has been a long process with lots of waiting. These are the basic facts about her medical condition.  Now you can continue to read on to see how God has been walking right beside me during this very uncertain time.

The journey

God has chosen a path for me, not one i'm always going to like, but this is where I am.....a wife of an amazing husband and mother of three precious children, ages 5, 3 and 4 months, which I love and wouldn't change for anything. God has chosen to use my children to teach me the most and and here is where I'll begin....

 Our second daughter was hospitalized with a serious infection at 3 weeks old that brought my husband and me to our knees. Not to go into great detail, but she was very sick after bringing her to the ER where she was in shock and the doctors were baffled about what could be wrong with her. She began having seizures, kidney and liver problems and her EEG showed brain damage. After almost 2 weeks in the ICU, the doctors didn't know what else to do and said she wasn't getting any better. But the prayers of many were heard and God healed her. Never before had I been so fearful and uncertain, and yet, never before had I seen God so clearly either. "Then they cried to the LORD in their trouble, and he saved them from their distress. He brought them out of darkness, the utter darkness, and broke away their chains. Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind,  for he breaks down gates of bronze and cuts through bars of iron." Psalm 107. God showed me this verse and it will forever be what I praise him for when I look at her.

Never had I been so shaken and clung to God more. My perspective in life truly changed for the better. At times, after she was better and home and doing so well and life got back to normal, I almost envied those dark days when I was so close to the Lord. Envied the dark days? But did I really want to go back there? When my path is calm and peaceful I tend to depend more on myself, not on God, and as hard as it was, I can finally say I am thankful for that trial.

Well, that wasn't the end of the journey for me. Honestly, I have thought, we have done our time, had our rough patch, now things can just go about how I have planned with my family. Thank you very much. But as I get older and see what more we are faced with, and those around me suffering, I'm realizing it's only the beginning of a story. A story where I'm going to try and let Him write the rest.

Seeking Daily Bread

So I'm entering the blog world....a little hesitant, but I hope this blog will be a place where I share my heart and somewhat of an outlet for me, a way to process the journey that God is taking me on. Writing comes easier to me, rather than speaking and helps me "get out" everything in my head.

My prayer is that God will just change me through the words that I type and then I may look back and see all He has done and His goodness. He is revealing himself to me in mighty ways and I want to share with others, so He can receive the praise and glory.

So, much of my blog will be a mix of what God is teaching me and more details of my life, a place where I can be real. So if you are choosing to read, I hope you will see God's amazing grace as I do.

"Daily bread" is a phrase I've said all my life in the Lord's prayer, but never until now has it struck me so....so deeply. God's grace and mercy are enough for today. Today.... not weekly, monthly, yearly. Just as He supplied the manna for the Israelites, He is continuing to supply me with enough grace for today. I am trying focus on Him and to live for Him daily.  After all, scripture clearly tells us not to worry about tomorrow. This is hard. I am a planner. I want to know what is coming next. The unknown, as you will learn about me, is one of my biggest fears....but that is what always brings me back to Him.  I am trying to be thankful for today.

As I have learned in the last several years, God's plan always prevails over mine (thank goodness) and because of such uncertainty in my life right now, I am choosing to "seek daily bread." I hope to do this well, although I fail, over and over again. I am thankful for his mercies that are new every morning.