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