Monday, February 28, 2011

PRC Day 2

I attempted to redeem myself today by rising early enough to ride the shuttle with the rest of the kids and their parents. That means I have to be downstairs by 7:15a with Hannah. Every day. Makes me yawn just thinking about it!

Today was 2 hours of parent meeting. It is a great resource and I really like having this time but it is just hard.

The program provided lunch today so everyone eats together in the atrium.

Hannah uses her time between groups to read. They try to give the kids about 5 minutes between each session to check their cell phones. Boy have times changed! Hannah turns hers off before she even leaves our room. She doesn't turn it back on until the day is over. I think she is avoiding me.

The program has a bunch of these white boards on wheels that they use all the time. Today Hannah had to draw a picture of her communication. Mom and dad scored between church (high end) and the dogs (low end). It could be worse. We could be after the dogs. In fact, now that I think about it. She is a teenager. We should be grateful we are before the dogs.

Hannah has started putting a scripture verse on her door for each day of the program. Two days, two verses. She has already had someone in the program talk to her about them. And again I realize that this would have been a better picture if I had cut out the obnoxious light on the left. I am learning. Slowly, but surely.

I know that this is only day 2 but I can already see changes in Hannah. In fact, I noticed changes after day 1 but I was a little hesitant to say so - - seemed too early. She is really doing well!

Sunday, February 27, 2011

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.

Saturday, February 26, 2011

Relaxing Saturday

Today was a relaxing day. And we were thankful! This is the first relaxing day we have had since we left Arkansas. I know it was only five days ago but it seems like 5 weeks!

It snowed most of the day so we spent time reading and relaxing. Our windows face the front of the building and the street is relatively busy so it gives us some entertainment. We have been fascinated by the amount of people who walk, run and ride their bikes in the snow. I mean, riding their bike on snow while it is snowing. Really? Who does that?

These pics are a bit dark. I am not a photographer. I don't even own a camera. This is Hannah's camera. She doesn't take pics either. We are pathetic.

This afternoon we made a Walmart run for necessities - - like ice cream.

One of the girls in the group is staying in a condo instead of at the RMH. Tonight her mom invited everyone over for pizza. Hannah enjoyed being with some of the girls in a more relaxed setting - - outside the program.

Friday, February 25, 2011

PRC Day 1

Today was Hannah's first day! I really did stay in bed while she met the shuttle at 7:15a! I'm pretty sure that takes me out of the running for Mother of the Year. I left later and walked. It is only a six minute walk. Today it was snowy and windy and about 9 degrees (-11 real feel), but I didn't care. I wanted to walk. I wanted to feel the brisk air and clear my head. It felt good.

On Monday, Wednesday and Friday we have 2 hours of parent group time. It is nice to listen to other parents who are dealing with the same types of issues and struggles. It is especially helpful to have someone give guidance on how to deal with all of it. The only thing I don't like about this group meeting is that they make me talk. Yuk!

This program is very intense physically and emotionally. I am incredibly grateful that she has the opportunity to be a part of the program. I know that what she is learning will help her to live a normal, productive life with pain. They had Hannah doing crunches today! Hannah has never done a crunch in her life! We have always believed that she could not do crunches (because of previous surgeries) so for her to do them the first day is unbelieveable. Makes me wonder what she will be doing on day 15!

When I met with her case manager/nurse she shared with me that she was thrilled when Hannah shared with her that she has a spiritual life. And when she found out that Hannah's dad was a pastor she was beside herself with excitement. Kids who have a spiritual life do much better in the program. I imagine there are a lot of reasons for that. The power of prayer. The hope. The joy. The knowledge that all of this is only temporary. And the overwhelming amount of support from brothers and sisters in Christ. For which we are incredibly thankful. And humbled.

Hannah had the chance today to talk to some of the kids about her history and their history. It is the first time in her life that she has been able to talk to kids her age that have the same concerns, fears and feelings as her.

Today is Friday at the Ronald McDonald House (and probably where you are, too!) and each Friday they have a little surprise for the kids in their box. A couple of Beanie Babies and some treats. A nice smile at the end of a rough week. :)

Thursday, February 24, 2011

Evaluation Day 2

Today was our late start day. 8:30a. From here on out Hannah will have to be checked in by 8:00a. This morning she had more testing. 3 hours straight. Kind of like the ACT. Only different. :)

Once each week - usually on Thursday - the Pain Rehabilitation Center (PRC) provides lunch for the students, parents and case managers and teachers. They set up tables above the atrium and it gives everyone a chance to interact in a more relaxed setting.

Lunch is from 12:00p 1:00p. At 1:00p they have teen group time with the parents. You can see Hannah's binder in front of her. It is a 3 inch binder filled with information on dealing with chronic pain.

I have figured out that I am required to be on site from 9:00a - 2:00p each day. Today Hannah and I met with the team that is working with her. We have been so happy with each and every person we have come into contact with. They are an amazing group of people who really care and desire to see Hannah in a better place. I am grateful.

And I have my own Parent Manual. I have not yet read even one page. :( You can't tell from this pic but mine is a 3 inch binder also. I'm certain it is all light reading!

The Ronald McDonald House called today with a room for us! Yeah! We had an appointment at 6:30p. That meant that when Hannah finished her programming at 5:00p (and not a minute early) we raced back to the hotel, packed up all of our stuff, loaded the car, grabbed some food and made our way to the RMH! Whew! It was tiring! Six trips up from the car to our room (which is far enough from the front door to count as my cardio - - for the next week!) and we have this fine mess!

Tonight we will clean off the beds and make them . . . and that's probably it! Tomorrow we will get everything organized and put away and settle in for the next 3 weeks!

Being at the RMH makes our schedule a little easier. Okay, my schedule. Hannah will have to be downstairs at 7:15a to catch the shuttle with the rest of the PRC kids. I will still be in bed. Ha ha!

Tomorrow is her first real day in the program. Day 1 of 15. This is it. We are praying that it is highly effective for her.

Wednesday, February 23, 2011

Evaluation Day 1

What a day! It was a full day and exhausting - - just like they said it would be.
Hannah started out with more lab work today then lots of meeting with therapists and nurses.

I was in a parent meeting from 10:00a to 11:00a. By the time 11:00a rolled around I was worn out! Being so immersed in the reality of the situation is just draining. You can see that by the time we had lunch, Hannah was looking a little worn too!

After lunch some of the kids in the program found Hannah and introduced themselves to her. It was super sweet of them and helped Hannah feel more at ease. We learned that about 78% of the kids in the program are girls. Interesting.

In the afternoon Hannah met with more professionals and did a lot of answering questions including a computer survery about her pain. She also got to spend time with the other kids in the program which was really great for her.

By the end of the day we were ready to just head back to the hotel and relax for the rest of the evening!

Tomorrow is the second day of evaluations and Friday will be her first day in the program. The kids we talked to were all very positive about the program. Very encouraging!

Saturday, February 19, 2011

Bella Vista to Rochester!

We made it to Rochester!
Of course our first stop was Sonic.
About 1.2 miles from home. :)

It was a smooth drive. We only stopped twice so we made really good time! It is beautiful here - snow on the ground, ice in the trees but the reality of being here is still unnerving. Not knowing what to expect over the next few days makes us both anxious even though we know that God is in control.

No room at the Ronald McDonald House so we are at a hotel. We are number 11 on the list. They expect us to be able to get into the RMH in 2 or 3 days.

Hannah got a kick out of watching me wheel a cart full of a months worth of clothes and random things up to the room. Normally we have help with this job. More entertainment to come as we move out of the hotel and into the RMH!

We are settled in for an evening of HGTV to try to distract us and keep our minds from wandering to all of the unknowns that begin tomorrow.

Oh, and I will take more than 2 pictures tomorrow. ;)