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.