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