How does this end well?

Hannah and I went to church today. It was good to be in church but not the same as being in our own church. We missed worshipping with our own church family but were grateful we found a church where the Bible is preached. I was waiting for him to say "How does this end well?" I love that question - for a lot of reasons, but right now it says home to me. We weren't home today. :(

This afternoon Hannah and a friend watched a movie in the 2nd floor living room at the RMH.

Hannah wanted to be sure you saw her lovely outfit. Notice the socks and the slippers. It's important to her. Just because.

We picked up so tape this weekend and have been able to put up all of the cards that Hannah and I have received. It is very encouraging and makes us feel a little less alone when we know that lots of people care. Thank you.

The only reason I started this blog was so that Ken and Sarah Jordan could keep up with what was going on with Hannah here at Mayo. As much as I am insecure about writing for others to read and my photography skills it became clear that lots of people care about Hannah. And so we share this journey with you so that you, too, will know how to pray. And I realize that some of you don't know all of Hannah's history. So today I am sharing her road. Her medical history and condition is complicated and the truth is I really don't understand all of it. But I don't feel terribly bad about that because there are things the doctors don't understand either.

But the one thing that I do understand is that God loves her more than I do. And He has shown up over and over and over again in her life and poured out His love and grace in a way that none of us deserve. Including her. She is blessed beyond measure. I feel like I have a front row seat to the power of a loving God.

Don't feel obligated to read it. It's long. And complicated. And just precious.

Hannah's Road

Hannah was born with a dimple on her back. It looked like a pin pressing gently into a balloon. Hannah had an ultrasound and an x-ray the day after she was born. Both came back clean. By the grace of God, her pediatrician said that he wanted Hannah to see a pediatric neurosurgeon just because he didn't want to have the last word.

We were living in the Dallas metroplex at the time and there were only 4 pediatric neurosurgeons in the whole area and they were all in the same office. When we called to make an appointment we just got whoever was available to see her. Or that's what we thought. God was at work. He had selected her neurosurgeon as we would see in the weeks to come and 15 years later.

When she saw the neurosurgeon he told us that he was sure that it was not attached to the spine so it really wasn't any big deal. He would do surgery to remove the dimple to reduce the risk of infection. And he was ordering an MRI. He said that no other neurosurgeon in the office would order an MRI for such an easy, straight forward case but he always liked to know what he was getting into. When we saw the MRI scans he did not even have to tell us - - we could see that the spinal cord was tethered to the dimple on her back. A 45 minute surgery just became a 6 hour surgery and everyone on the medical team could be completely prepared for what they were getting into.

Hannah was diagnosed with the tethered spinal cord. A mild case of spina bifida. The spinal cord is meant to move freely in the spinal fluid. When it is tethered and the cord is pulled Hannah could lose any and all function, feeling and movement in her lower half.

The neurosurgeon would go in and release it but sadly the cord could retether through the scar tissue. And worse yet, there was no way to know for sure because all of her MRIs would now show the scar tissue. The only way to know was for her to lose some function, feeling or movement. At that point, they could go in and re-release the cord, however any damage that was done was permanent. The re-releaseing would just stop any further damage.

We were now walking a fine line. The surgery is very risky. You don't want to do the surgery unless it is absolutely necessary. On the other hand, if she needs the surgery, it needs to be done as soon as possible because of the permanent damage that is being done while we wait for surgery.

So, after her first surgery we were armed with a list a symptoms to watch for - - for all of her growing years. Once she quit growing she would stablize because even if it was tethered, it shouldn't pull since the pulling happens when she grows. We learned to watch her like a hawk. Every move she made was filtered through the untrained eye of her parents looking for anything that would indicate she was experiencing symptoms that needed more attention.

Hannah recovered completely and had no problems for 3 years. In December of 1997 we began to notice different behavior in Hannah. She did not want to walk. We were living in El Paso at the time and many of our friends believed that it was because we had a newborn at home. But I knew Hannah. That wasn't Hannah's personality. We headed back to Dallas and there was a fatty deposit at the spine that they could not remove 3 years earlier because she was so tiny and now it was pressing on the spine. In January of 1998 she underwent her second surgery to remove the fatty deposit and release the spine. Again she had a complete recovery.

Hannah went 9 years without any problems. In January of 2007 Hannah started having significant problems. Weakness in her legs, diminished bladder function and lots of pain. Hannah underwent her third surgery in February of 2007. Miraculously she suffered only minimal permanent damage. She had lost some range of motion in her legs forcing her to give up ballet and the  pointe shoes she had worked so hard for, but her bladder function returned to normal, the pain returned to her normal level and her legs returned to normal strength. Astonishing.

In January of 2010 Hannah began experiencing extreme pain in her left leg. Her neurosurgeon did not want to do surgery. He felt like there was no evidence that there was anything wrong. He sent us home with orders for physical therapy. After 2 weeks of physical therapy her physical therapist said that there was no reason for her to come back. Hannah was getting worse, not better. She was deteriorating. We headed back to Dallas. We met with Hannah's neurosurgeon and he made it very clear that he did not think Hannah needed surgery. After listening to him discuss all the reasons he thought she didn't need surgery, he said that he would operate. As parents we were completely torn. We trusted Hannah but we didn't want her to have a surgery that she didn't need. It was way too risky. We prayed without ceasing for direction. It was all we could do.

On February 19, Hannah went in for what should have been a 5 - 6 hour surgery. After 10 1/2 hours of surgery her surgeon emerged rattled and unnerved. The first thing he said to us was "Well, now I understand why she was in so much pain." When they do this surgery they hook her up to a bunch of leads and for two people on the team their only job is to watch monitors and communicate what parts of her are being affected by what the neurosurgeon was doing. The neurosurgeon let us know that he did as much as he could as safely as he could. He couldn't do everything. It got to the point that the risk was too great to proceed. And let us know she would be on a catheter. Another neurosurgeon who was in her surgery let us know that any other neurosurgeon would have taken one look at her and closed her back up because the work was just too extensive. But Hannah's neurosurgeon stuck with her. The neurosurgeon that God selected for her 15 years earlier. Unbelievable.

When Hannah had her two week follow-up with her neurosurgeon he asked about the catheter. Hannah was never on a catheter. Her neurosurgeon was completely shocked. Is there a word for "beyond miraculous?"

Her testimony is amazing. God is good. So many miracles. So much grace.

Hannah - favored by God; grace.

But if God chose to never do another thing for Hannah, He has already done enough. Because one day she will dance for the Lord - - without pain.