Spreading Christmas Joy

It's been busy around here - Christmas Eve services at church, Christmas morning pancake outreach to the community, plus getting all the family Christmas surprises in order. Now that things have settled down a little I have time to update you.

Garren continues to progress with his walking. He is getting stronger, Race To Walk has really been good for him. His muscles are getting bigger, and he is gaining all kinds of weight (all muscle). He's getting used to his new manual wheelchair. The frame is yellow, and the straps and padding are black...perfect for the Steeler fan that he is! He has learned how to pop a weely! Fun times!

Several weeks ago, before Thanksgiving, my uncle went into the hospital for surgery. After the surgery there were many complications, and he nearly didn't make it. Garren, who knows what it's like to spend endless nights in the hospital, realized the possibility that Uncle Hu might end up spending Christmas in the hospital. So Garren came up with an idea all his own.

You can read about it from my Aunt's perspective here: http://goo.gl/9iBS6

We're taking a couple of days off from therapy to spend some time having fun together as a family. Garren will get back to work later this week.

I hope you all had a Merry Christmas!

Let's Try This...

We took Garren for a follow up visit to the EENT this past Tuesday. Using a scope to watch the inside of Garren's throat, he concluded that he doesn't see any change in Garren's swallow since the last time he saw us about 3 months ago. Needless to say, that was discouraging to hear.

He went on to inform us that Garren's current speech therapist recommends that we discontinue therapy for swallowing, because she isn't seeing any improvement either.

I asked about next steps. What else can we do? Who else can we talk to? Is there anything else we can try? It's as though they know (or think they know) in their heads that Garren will not likely swallow again, but they don't have the heart to tell us. So they keep trying.

Several months ago we had discovered an intense swallow therapy called the McNeil program. It's a 3 week, 5 days a week intensive swallowing therapy that has seen good results in many patients. We had searched high and low, and the only location we could find that would even consider seeing Garren was in Atlanta. When we asked the doc about the McNeil program, he said "Sure, that's what we do here." Ever have one of those moments where you want to throw your arms up in the air and say "When were you going to tell us about it?" I didn't say that, as badly as I wanted to...

So he offered to refer us to one of his therapists. Of course we jumped at the opportunity. His scheduler came in a few minutes later and informed us that the next available appointment was January 24. That's 6 weeks! She was kind enough to add us to the waiting list, in case someone cancelled an appointment.

Friday we got a call that an appointment had been cancelled. So we rearranged our schedule and got Garren over there. The speech therapist assessed Garren, and decided that even though Garren's case doesn't show a lot of hope, she would continue to see him and take him through the 3 week program. He starts January 23rd.

So we will try this now. Let's pray for some kind of progress.

Yet I Will Rejoice

I' finishing up my one year journey through the Bible. I was reading in Habakkuk 3 this week. This verse stood out to me:

"Yet I will rejoice in the Lord; I will take joy in the God of my salvation. God, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places." (Habakkuk 3:18, 19 ESV)

To really get what he is saying, it helps to go back and read verse 17:

"Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail, and the fields yield no food, the flock be cut off from the fold and there be no herds in the stalls."

Habakkuk paints this picture of despair. Nothing is going right. There is famine, the crops are failing, and the livestock has all disappeared. It's a desperate situation. Hope seems to have vanished. People are going to starve. It would be easy in this scenario to start crying out to God "Why God, are you being so mean to us? Why won't you provide the way You used to? Why can't things be the way they used to be? Why can't you make it better?"

I feel that way...a lot lately. Where's God when things seem to be falling apart? Look around - we all have our own little personal problems. Sickness, finances, relationships. Why do bad things seem to happen? We all could whine and complain about so many things that don't seem to be going our way. I sure can think of a lot of things I would change if I could.

But Habakkuk, instead of complaining, proclaims that he will rejoice in the Lord. Even in the midst of trials. Even in the midst of crisis. Yet I will rejoice in the Lord. Yet. Even though humanly I have every reason to give up hope and  complain, yet I will rejoice in the Lord.

I will take joy - not sadness, not hopelessness, not misery - but joy in the God of my salvation.

God, the Lord, is my strength.

I pray that you will pause today, in the midst of your crisis, whatever it might be, and simply rejoice in the Lord. Take joy in the God of your salvation.

Heartfelt Prayer

Last night after dinner we had our family devotions. It’s always a bit of a challenge to get two teenagers and a 7 year old to focus on the same thought for 10 minutes. There’s the age difference, there’s the difference in level of knowledge, and there’s this little thing called attention span. So we made it through, finished our thoughts, and I gave a little challenge.

We always close in prayer together. Sometimes I pray, but I like to give the kids a chance to pray as well. I hadn’t asked Garren in a while, so I said “Garren, will you pray tonight?”

He said “Yes.” He started to bow his head, then he paused, looked back up, and said, “Wait, I need prayer requests. Kara, what’s your prayer request?” She was caught off guard, so he looked at me. “Dad?”
I said “You can pray about your doctors appointments tomorrow. And we have a praise, that your nursing got extended.”
He looked at Kelsey. She said “Pray for Uncle Hu. He’s in the hospital, pray that he feels better.”
Then Garren asked Nancy for a prayer request. She said “Pray for Nanna, she just had surgery today. She’s a little sore.”
Back to Kara. She said “Pray for the boy, Alex, who is in the hospital with the brain injury.”

Garren went back around, trying to remember each of the requests, then he folded his hands, and as he bowed his head he said “I hope I can remember all those.”

Then I heard one of the most heartfelt prayers I’ve ever heard. Garren prayed from his heart, directly to God. He meant every word. He wasn’t embarrassed or ashamed. It wasn’t forced, it wasn’t a copy of what he’d heard before.

“Dear Lord,

I pray for Alex in the hospital. 

Help him to get better quickly.

I pray for my doctors appointments tomorrow. 

I pray for my swallow test, I hope it goes well. 

And Lord I praise you that my nursing got extended. 

It’s such a blessing because my mom and dad can get some sleep.

I pray for Nanna and Grandma and Grandpa. 

I hope she feels better soon.

I pray for Uncle Hu, and Aunt Sherril. 

I pray that he feels better and can move from ICU soon. 

And I pray for Aunt Sue. 

She has surgery on Friday. 

Let the surgery help her so she doesn’t have to deal with it anymore.

In Jesus name, 

Amen.”

Nancy and I were blown away. We were so in awe, and completely amazed at how genuine his prayer was. It was refreshing and exciting to be a part of. I look forward to many more.

Another Deadline

Tonight is our last night of nursing as approved by Medicaid. We have submitted all the paperwork for approval to continue with the overnight help. We are just waiting to hear back from them. Please pray that they come through again.

I started asking questions about Garren's swallowing earlier this week. First I asked his speech therapist. I just wondered, could there be something going on with Garren's throat that we haven't even considered? Could there possibly be some kind of blockage? Scar tissue maybe? Could there be more to this than the neurological issues we've been pointing to?

So Nancy called the ENT. He approved another swallow study and is going to see Garren again next week. The swallow study is so that the doctor will have the very latest data to work with. I know many of you have been praying for Garren to swallow. I also know that God's plan is better than our plan. My prayer now is that somehow, someway, we might discover something that can help Garren move past this.

I'll keep you updated! Thanks for praying.

Happy Thanksgiving

I'm sitting at the hospital watching Garren walk on the Locomat machine. He's got three therapists working with him, helping his body learn to walk. Sometimes it seems like this is taking an eternity. But looking back over the past several months we have a lot to be thankful for.

Last week while I was gone in Haiti, Garren did something pretty amazing. He surprised us all! One night, while Nancy was upstairs putting Kelsey to bed, he realized he needed a shower (of course that is an amazing realization for any 14 year old boy!)

So he went into his bathroom and got himself into the shower, washed himself, washed his hair, got dressed, brushed his teeth, and brushed his hair...all by himself. Garren has really begun to become more independent. He continues to surprise us with the things he does. He baked cookies and brought them to me when they picked me up from the airport.

The other night I gave him a surprise. I rented one of his favorite Xbox 360 video games. It's one he's been asking for. I wanted to see if he would play it before I paid the money to buy it. Amazingly, he hasn't stopped playing it since I brought it home! He's pretty good at it too (don't tell him it's good therapy).

We have a lot to be thankful for. And though we know that God isn't finished with Garren, we do want to remember to give Him the glory for all He has done.

I hope you have a happy Thanksgiving!

Another Baby Step

Remember the tarsorrhaphy? The procedure where the eye doctor stitched Garren's left eye partially shut because he wasn't strong enough on that side of his face to shut it himself? Well today the doctor decided that Garren's eye has gotten strong enough to function properly...so he removed the stitches. Another baby step toward recovery. It's so great to see Garren's eyes both open and looking normal.


Just when it feels like things aren't changing, God gives us a little glimpse of hope. 

Grateful

It's easy to get caught up in what isn't changing for Garren. It's so easy to take for granted all the good things that God is doing. Garren is still continuing to progress...slowly but surely. Here are a few things I've noticed recently:

• Garren's fine motor function is fine tuning. He is able to pick up a cup and set it back down without spilling it.
• Garren is able to high five without missing 5 times before hitting his target. He can usually hit his target the first time.
• Garren is getting strong. We wrestled on the floor the other night. That's the first time in 9 months that I have gotten to love on my son that way. He had me working pretty hard!
• Garren is able to use his iPad now. He plays games and posts on Facebook regularly. He is able to tap and touch the screen with hardly any trouble at all.

As we continue to pray for Garren's swallowing to come back, I don't ever want to seem ungrateful for all that God has done and continues to do in Garren's healing process. 

Not Yet

I woke up tentatively expectant on Friday morning. Nancy woke up excited, like a kid on Christmas. Prayer is a funny thing. Many of you joined us yesterday in praying, fasting, and crying out to our God for a miracle. "Please God, let Garren swallow!"

I'd love more than anything to be writing about how God did perform a miracle...that Garren suddenly started swallowing, that he not longer needs to spit, that he finally slept through the night with no need for constant observation.


But I can't. Because that didn't happen. 


"If I throw out a boathook from the boat and catch hold of the shore and pull, do I pull the shore to me, or do I pull myself to the shore? Prayer is not pulling God to my will, but the aligning of my will to the will of God." - E. Stanley Jones


Prayer is not about me. Prayer is about God. This is not easy to understand, nor is it easy to accept. I want what I want and I want it now. I have plans. I have good ideas. I know what's best for me!


But once again I'm reminded that it's not about me.


I know God put it on my heart to spend a day in focused and intentional prayer for Garren. I am so thankful for the number of people who joined us in that yesterday. I trust that as you "pulled" on your "boathook" that God was able to align your will with His will. 


We will continue to pray for Garren's complete healing. We will continue to trust that God's plan is better than our plan - every time. Thank you for being a part of our special day yesterday. Thank you for your continued prayers.

A Call to Pray and Fast

It's been about two weeks since I posted anything here. I was away last week in Haiti, and the week before was full of preparations for the trip. We had a great trip. Learned new things, saw lives transformed. I am so blessed to be used by God in this new position as Missions Pastor. I love what I am doing!

One thing I am learning more and more is the importance of prayer. I am becoming more and more aware of our need to cry out to God in our time of need. He longs for our total and complete dependence on Him, and Him alone. I look around at great men of God, and I am blown away by their simple faith, their unwavering trust in God. Rather than worry about how something will get done, they simply move forward, knowing it is God's plan, and that God will provide the resources! Just takes steps. Just follow and obey.

This Friday, November 4th, marks 9 months since Garren ate his last Toaster Strudel. 9 months ago this Friday is when Garren went into the hospital. So much has happened, he has come such a long ways. He is getting stronger everyday. He is getting closer and closer to walking again. But his ability to swallow is a big concern for me. Since we cannot see into his throat, it's hard to know if or how much his ability to swallow is improving.

I'd like to ask you to join me this Friday in a day of prayer and fasting for Garren's ability to swallow. I am going to skip dinner on Thursday night, and fast from food for 24 hours. I will spend as much time in prayer as I can during those 24 hours. I am crying out to God for a miracle, for a marked change in Garren's swallow. Will you join me? I look forward to seeing God move in a big way.

Thank you.

Huge Praise

A big thank you to each of you for your prayers. Today is the last day that our primary insurance is going to cover home nursing for Garren. However, we found out today that Medicaid approved 12 hours of home nursing per day through December 1. That is truly a blessing. We don't feel like we get enough rest as it is. I'm glad we don't have to try and figure out how to manage taking turns staying awake all night!

God is good, and we are thankful for this answer to prayer.

Big Step

Today is a big step. Garren is at school without me, without Nancy. This is the first time since February 4 that we have left Garren with someone other than family for such an extended period of time. The reality is, I think Nancy and I are more nervous than Garren.

His assistant is very nice. She will work well with Garren. As much as he hates school (what 14 year old boy doesn't), I think he's ready for a break from mom and dad.

This afternoon Garren will go for his second workout at Race to Walk. I went with him on Monday, and wow - that place is awesome! They are all very friendly, and very knowledgable, and very upbeat and encouraging. Garren loves it too. Here are some pics of Garren in action.

Race to Walk

Nancy's been working hard, scouring the internet, talking to therapists and doctors, trying to discover anything that might be out there that could help Garren continue to progress. In the last couple of weeks she came across a new opportunity located in Mooresville: Race to Walk.

Race to Walk is a gym that is devoted to providing a comprehensive, post-acute program for individuals suffering from spinal cord injuries and other related neurological disorders. 

"Specializing in exercise-based training, we provide state-of-the-art equipment, strategic training techniques, in a safe, supportive environment. Our ultimate goal is to assist each client towards attaining their own personal goals. We will work together to maximize physical health and well-being in a quest for ultimate functional outcome and an improved quality of life."

We made an appointment for an initial assessment, and took Garren on Thursday. We met several of the trainers, and got a tour of the gym. Then they did an assessment to see what Garren could do, and to get a starting point for his training.

We go back on Monday for his first workout. Garren is really looking forward to this. When you walk in, it looks like a gym (instead of a hospital). The people that work there are trainers, with expertise in therapy, and a strong background in sports and physical training. The guy that assessed Garren played collegiate football. Nancy and I explained that Garren is used to being pushed - hard - on the the field in football practice. The trainer promised us (and Garren) that he would be pushed - hard.

The plan is to take Garren twice a week for a 2 hour workout each time. It's a 1 hour drive each way, so this is a huge time commitment. I think it will be worth it. Also, it is not covered by insurance, so the cost is entirely out of pocket. Again, worth it.

And just a quick update on school. An assistant has been hired. She's very nice, and is willing to work with us to make sure Garren has the best possible school experience. Because of the travel time required to get Garren to Race to Walk, Garren will be attending school on Monday, Wednesday, and Friday, so he can workout on Tuesday and Thursday. 

I attended school with the assistant this past Wednesday to help get her oriented. There's no school on Monday, so Garren will start with his new assistant on Wednesday. That'll be a big day for all of us.

Wait!

Waiting. I don't like to wait. I don't know many people who do. Waiting is hard to do. We want it now. Everything around us tells us we can have it now, overnight, without any waiting. But life with God doesn't work that way. We are on a journey, and God uses waiting to teach us. It is through waiting that we learn patience. It is through waiting that we learn total dependence on God. Total dependence on God is what He wants from us.

Andrew Murray, in his book "Waiting on God," wrote:

"All the exercises of the spiritual life, our reading and praying, our willing and doing, have their very great value. But they can go no farther than this, that they point the way and prepare us in humility to look to and depend alone upon God Himself, and in patience to wait His good time and mercy."

Waiting is a necessary part of growth. We must learn to wait upon the Lord.

So we wait for Garren to heal. We do everything we know to do, but there comes a point when we have to put it in God's hands, and trust Him, and wait on Him.

Garren does continue to progress. He makes small but forward progress. We are very thankful for that. We found out recently that the insurance company has decided that Garren no longer needs overnight nursing care. We are not so sure about that. Without the ability to swallow, someone has to watch and make sure he doesn't choke on his own saliva while he is sleeping. We are waiting to hear if Medicare will cover nursing care. If not, come mid-October we will be having to figure out how to stay up with Garren.

My fervent prayer has been that Garren would start swallowing. This would just change everything. I have met so many of you who tell me you are still praying daily for Garren. We thank you so much for that. As you continue to pray, pray that Garren will swallow.

Close Call

Garren loves his bike.

Yesterday, once the rain stopped, we took off on a ride through the neighborhood. Kelsey just learned this week to ride without training wheels, and she was joining us. Me, Kelsey, and Garren headed out for a great time together.

We turned the corner, and headed up the hill toward the community pond. We had to stop and wait for the UPS truck to pass by, then we continued on our way. As we came over the top of the hill, Kelsey sped on ahead of us. I waited for Garren to reach the top, then we started to head down the hill. Gravity began pulling us downthe hill, faster and faster. Garren's hair was flying back, his eyes had a look of excitement. I rode beside him watching the speedometer on my bike.

"Garren, we're up to 9 miles per hour."

Kelsey was almost to the bottom of the hill.

"10...11"

Then I looked over and saw Garren begin to wobble. Then in an instant he overcorrected and flipped the bike. He hit his head hard. Then slid to a stop with the bike on top of him. I jumped off my bike and ran over to him.

"O God, let him be ok!"

He was unresponsive. I got the bike off of him and stretched him out. My first aid training from years ago told me to keep his head and neck immobile. I talked to him. "Garren, Garren, can you hear me?"

I looked up to see Kelsey running toward us. "Kelsey, go home right now. Get Mom and tell her to come the the pond immediately!"

"Ok," she said, and started running home.

"Kelsey, ride your bike home, and tell Mom to come to the pond right away."

"Ok," and off she went.

"Do you guys need any help?" the UPS man was coming toward me.

"Yes. We need an ambulance. He's not responding to me."

I continued talking to Garren. After about a minute he started to wake up.

"Garren, it's ok, don't move."

He started raising his arms above his head, and tried to push me away.

"Garren. It's ok, don't move. I've got you."

As he came to I started asking him questions.

"Do you know what happened? Do you know where you are?"

No.

"You were riding your bike, and you crashed.do you remember riding your bike?"

No.

"Do you know your name?"

"Garren Michael Janes."

"do you know your birthday?"

"February 12, 1997."

"Good, now do you remember what happened?"

No.

I explained what was going on. The medics arrived, then the ambulance.

"Dad, Are you going to go with me?"

"Yes Garren. I'll be with you the whole time."

They strapped him on a backboard, put him on a stretcher, and as they raised the stretcher to roll him away, Garren said "Dad, I've always wanted to do this."

"Do what Garren?"

He lifted his right arm up and gave a thumbs up to everyone. I knew right then that he was going to be fine. As we loaded into the ambulance, he said "Dad, at least I'll remember riding in the ambulance this time."

We got to the hospital, talked to the doctor, and then waited for hours to get a CT Scan and some xrays. While we waited, Garren kept finding more cuts and scrapes. "Cool, that's a good one. Awesome, look at that blood. This is going to make a great story!"

And a great story it is. Garren's xrays all checked out just fine. No broken bones, no side effects. Yes, he was wearing a helmet. By the time we left the hospital he could even remember the moments leading up to the crash.

When we got home, I gave Kelsey a big hug. "Kelsey, I'm so proud of you. You were such big girl, riding home and getting help. Good work!"

She told me her side of the story, and showed me how fast she pedaled to get home.

What a story. And thank you God that it wasn't a disaster.

And Garren still loves his bike.

Let's Ride

I wasn't expecting it to get here for another week. When FedEx showed up at the door, part of me wanted to ask him to bring it back next week! I reluctantly signed and accepted the package.

I had made a deal with Garren that if he did 50 sit-ups and 15 push-ups that we would order the recumbent tricycle. He had done 27 sit-ups and 15 push-ups just the night before. I knew he would build up to it. And he was so determined! And now the bike was sitting on my front porch. What to do? Hide it until he does the sit-ups? No way! I brought the package into the living room. "Garren - Look at this!" He turned, looked, and I wish you could've seen his eyes! "Awesome! But...I haven't done 50 sit-ups yet."

I know.

"You will" I said. "Let's go ahead and put it together and try it out!"

So like a couple of kids at Christmas we assembled the bike, and took it out for a spin. Amazing! Garren LOVES it. He rides all over the neighborhood. He's free! All he wants to do now is go outside and ride that bike. And the bonus is this - it's great therapy for him. As I watch him pedal around, all I can think about is 7 months ago as he lay in the hospital bed, wondering if he would even live. And now look! God truly is amazing - and we truly are thankful.

Is That the Top?

About a month ago our family traveled to Colorado. While we were there, I spent as much time as I could hiking and climbing mountains. On one morning, Kelsey, our 6 year old, was up early with me, so I talked her into going on a short hike with me. We set off to climb Lily Mountain. It's about 2 miles up, and 2 miles down. And being a mountain, it's uphill all the way.

We packed our water, some snacks for the trail, and drove to the trailhead. We were off. The weather was absolutely beautiful. The sky was clear and the air was crisp. We began our ascent. As we walked, we talked, looked at flowers, and spotted birds and chipmunks along the way. We were having a great time. About 10 minutes into what would be about a 2 hour hike, Kelsey started asking "Is that the top?" I patiently answered, "No Kelsey. You'll know when we are at the top, because we won't be able to go up any higher." I said "Look ahead, see how there are trees and rocks higher than we are? The top is up there somewhere."

So we walked on, and about 3 minutes later I heard "Is that the top?" I again tried to explain to her that we were nowhere near the top, and that it would be better if we didn't keep asking. "Let's just enjoy the hike." But to a 6 year old, I guess enjoying the hike means asking "Is that the top?" every 50 yards. And she did. We walked and talked, and she continued to ask "Is that the top?"

As Kelsey continued to ask the big question, I couldn't help but think about our life over these last 7 months. God has taken us on quite the journey - an unbelievable hike up what sometimes seems to be a mountain with no top. We question God's work in our lives. We press forward, though the journey is tough. We all have troubles, struggles, hard times - whatever you want to call it. Life is not easy. But we must press forward, we must keep taking steps with the hope that eventually we'll reach the top. As Kelsey continued to ask "Is that the top?" I couldn't help but wonder "How many times have I asked God 'Is this the top? Can we head back down now?'" And how many times must God be looking down at me, patiently, lovingly, saying "Geoffrey, you'll know when we get to the top. For now, let's just enjoy this walk together."

Eventually, Kelsey and I did make it to the top of Lily Mountain. It was worth every step. We had a great time that day. I will not soon forget the lesson I learned. Stop asking God if that's the top. No matter how hard it gets, or how impossible life seems, just enjoy being with your Father, right where He has you right now.

Busy

A lot has been going on. Between school, therapy, and doctor's appointments for Garren, and my work schedule, things have been non-stop. Garren and I are going to school twice a week now. I sit with him in class and take notes. I help him take tests by writing his answers for him. Nancy and I spend time with him at home helping him with his homework.

The other day I found a three wheeled recumbent bicycle that I thought Garren might be able to ride. So I showed him a picture of it on the internet. He got so excited about it, he wouldn't stop talking about it. He kept asking if we could get it. So I told him when he could do 15 push ups and 50 sit-ups, we would buy it. He said "Let's go!" "Right now?" "Yep!"

So I got him on the mat, and he did 20 sit-ups and 10 push-ups! That was a week ago. Yesterday he was up to 15 push-ups and 27 sit-ups. He is so motivated! And the work out is excellent for him! Along with that, he's started traveling to CMC Main in Charlotte to workout on the Lokomat. It's a million dollar machine that is designed to retrain his muscles to walk again. We are seeing continued progress in him. It's awesome!

Tomorrow it's back to school. The school is working right now to hire an assistant to be with Garren at school. That should happen in the next couple of weeks. Once the assistant is hired it looks like Garren will begin going to school 5 days a week. What a huge step!

In the mean time, I guess I better work on my own homework and note-taking skills!

Swallow Study

We took Garren on Tuesday to have another swallow study done. This is the test where they xray his throat while he tries to swallow a pudding like substance laced with barium. The speech therapist who has been working with him for that last couple of month wanted to see if anything had changed since the last study.

Last time the study revealed that the epiglotis wasn't working. The epiglotis is what folds down to cover your airway when you swallow. Also, last time, the substance slid to the back of his throat, and sliped right into his airway - no cough, no reaction of any kind.

So this time we weren't really sure what to expect. They got him all set up, put me and Nancy behind the lead wall of safety, and we watched the tv monitor with anticipation. The therapist put the pudding his mouth, and Garren started to swallow. He was able to control it, and push it to the back of his throat. He tried several times, you could see him pushing. But eventually it spilled over into his airway.

There are a series of sphincters that lead from the back of the mouth to the esophagus. When food hits this area, these sphincters work to push the food downward, into the esophagus, and then into the stomach. These sphincters didn't move at all.

The good news is, there was more control and more movement in Garren's mouth as he tried to push the pudding down. What we are seeing is the result of the injury to his brain. It's a neurological issue, and it still has time to heal. We will continue to work with therapy. One of his doctors said "This is not the timet o back off." We are in a crucial phase, and we have to throw everything we can at this. So we will.

His speech therapist has been great. She did some research and has found a couple of programs that we are looking into.

Thanks for continuing to pray. Pray that Garren's connection between his brain and his throat continues to heal. Pray that the connection will rebuild, that his swallow will heal.

"It's School!"

We made it through the first day of school. It wasn't so bad. In fact, everything went really well. We met the assistant principal in the main office and she took us to Garren's first class - Earth Science. The teacher was great. He was teaching about conversions (cm to mm, and stuff like that). We had a worksheet to practice, which I helped Garren with (he did the work, I just wrote his answers). Then he gave a practice quiz.

The next class was English. Vocab, grammer, The Odyssey - fun! Well, Garren didn't think so, but what are you gonna do? Next was Principles of Business. Garren got a laptop, and the assignment was to read a news related article, and write about it. He went straight to a sports story about college football. After lunch, we went to PE. We observed for about 30 minutes, then headed home.

Everyone was so helpful. The faculty and staff are really doing a great job at helping Garren get back into the swing of things. I asked Garren how he felt about being at school. He said "It's school, I'm not going to like it either way." That's Garren. He hasn't changed a bit!

Garren's going to do great. It's going to be a bit more work for us (nothing new there), helping him with homework and classwork, but I am really looking forward to seeing him get back into the classroom. The school is in the process of interviewing and hiring an assistant to help Garren throughout the day.

Thanks for your continued prayers as we enter yet another phase of recovery.

First Day of School

We met Garren's homebound teacher yesterday. We are so blessed to have such great people working with us at Piedmont High School. She came to the house and worked with Garren for a little while. Then we talked about our plan and goals for Garren regarding school.

Friday I am taking Garren to school for a visit. We are going to go through and visit his classes, following his schedule. Yes, I'm going back to high school. I'm not sure what to think about that. Last time I was in high school all I wanted to do was get out of there! (I just hope I don't get sent to the principal's office like I used to!)

Yesterday I had the pleasure of meeting Garrison. Garrison is one of the many children at our church who has been praying for Garren every day since he went into the hospital in February. The faithfulness of these young kids continues to amaze me. Thanks Garrison!

Continue to pray for the assistant that will be hired to work with Garren at school. A perfect fit will be crucial to the success of Garren's reentry into school. I know God already has that special person picked out. Pray for the wisdom of those at the school who will be interviewing and hiring this person.

And one more thing - don't forget to come out and eat at Jersey Mike's Subs in Monroe on Friday! They will be donating 20% of the proceeds to help cover Garren's medical expenses.

Transitioning

We met with the staff at Piedmont on Friday morning about Garren returning to school. Here's the plan we came up with. Effective immediately, Garren will be considered "homebound," meaning he will have a homebound teacher who will begin guiding his studies at home. Meanwhile, the school is going to locate an "assistant," someone who will be able to assist Garren throughout the day when he does begin attending classes.

We had requested that I be able to attend classes with Garren initially, to help him with the transition, and to help train the assistant. At first there seemed to be a bit of reluctance, but we've been able to come to a compromise. While Garren is still considered "homebound," he and I will be permitted to "visit" his classes, so he can go ahead and get used to being in the classroom, and start being around his friends again. Once the assistant is located, I will be permitted to attend along with Garren and the assistant until we feel that Garren is transitioning well.

I don't really foresee any major challenges. The staff at Piedmont has been very gracious and welcoming. I am looking forward to seeing Garren transition back into his school.

You can pray for a great fit in the assistant. It's always an adjustment when it comes to finding someone to work with this closely. Pray that Garren is assigned someone with a personality that fits his. Also, pray for us as we figure out the best way to help Garren succeed in school. This is a big step for us all.

Jersey Mike's Subs - Fundraiser for Garren

I was approached recently by Jersey Mike's Subs in Monroe about doing a spirit night fund raiser for Garren. They want to donate 20% of the proceeds toward Garren's medical expenses.

Why don't you come join us? Friday, Sept 2, from 4-7pm. When you order, tell them you are there to support Garren.

Here's the flyer with all the details.

Back to School

Tomorrow is the first day of school for our kids. I know a lot of you are probably wondering what Garren will be doing about school. Well here's the plan. We will be meeting with several staff members at Piedmont High School on Friday morning to determine the best way to move forward. So while Kara and Kelsey's summer ends today, Garren gets one more day.

We are not sure exactly what will happen. We will be discussing on Friday, and hopefully determine, at least for now, what's best for Garren. This could mean Garren goes to school every day, or that he is home schooled, or some combination. One thing is for sure, whatever we decide to do will likely change as we move forward and Garren continues to progress.

Garren is continuing to do great. His speaking has gotten much clearer. He continues to crack us up with his witty sarcasm. And he does things that take us by surprise. This morning, Garren was sleeping, and Nancy was sitting in the living room. She heard him call out to her, so she went in to see what he needed. When she walked into his room, she found Garren sitting up, with his feet on the floor. He had gotten stuck at the foot of his bed, with his hips wedged between the bed rail and the foot of the bed! She said "What are you doing?" Garren said "I had to pee real bad!" He was somehow going to try to get to the bathroom, by himself! Crazy boy!

And We're Back...

Well, we're back from our amazing trip to Colorado. We all had a wonderful time. Everything went very smoothly. The plane trip was great, the airline employees were all super helpful, although I think we could all do without the excessive baggage fees! The rental company was super helpful. He was there waiting for us at the airport in Denver with the van and the power chair that we rented. He met us again when we left a week later to pick up the van and the chair. Super friendly and amazing service.

The cabin we stayed in was not designed with a wheelchair in mind, but we made it work. I figured out that we could line up the ramp with the cabin door, so Garren could drive right out of the van into the cabin. Not ideal, but it worked!

Garren had some great fun driving that chair all over Colorado. He learned how to get stuck, and we learned how to get him unstuck.

And the reason we went in the first place - the wedding. My niece Tiffany married the love of her life, Rocky. The wedding was outside, with the Rocky Mountains as the backdrop. I think more couples should ask me to marry them in the Rocky Mountains! The weather was great all week, until 4pm on Friday, the exact time fo the wedding, a thunderstorm rolled in. No big deal though, we just waited for the storm to pass, then went out in the wet field and held the ceremony. It was a great time.

This week we are gearing up for school. We will meet Friday with the school staff to determine the best way to handle school for Garren. Please pray that we are able to come up with the best solution for him.

Cleared for Takeoff

Sunday we are embarking on an adventure. It would've been a pretty big adventure 6 months ago, when things were "normal." But now, with added challenges, it's even bigger. My niece is getting married in Colorado next Friday. She asked me to perform the ceremony. We've been planning this trip for almost a year.

Garren has been doing great at night, keeping his oxygen levels up on his own, coughing and clearing his lungs and throat on his own. The doctors have all cleared him to fly, and to spend a week at 8500 feet above sea level. We were able to rent a wheelchair, and a wheelchair van in Denver. The van and chair will be at the airport to meet us when we get there. We even have night nursing care for the time we are in Colorado. God is so good!

We arrive on Sunday, and Monday Kara and I will be setting out to climb Long's Peak, the highest mountain in Rocky Mountain National Park. The peak is at 14,259 feet above sea level. We'll hike to the Boulderfield campground, elevation 13,281 ft, spend the night, then climb to the summit on Tuesday morning.

We are all looking forward to a change of scenery, and some family time away from it all.

Proprioception

That's the name of Garren's latest challenge. Proprioception is the ability to know where you are in space. It's what allows you to be able to walk without falling over, to write with a pencil without breaking the lead, or to hold a styrofoam cup without crushing it. Without proprioception it's impossible to "walk and chew gum" at the same time.

Garren is strong. He can stand, he can push himself up from sitting with his arms. He can almost beat me at arm wrestling. His strength is returning more and more each day. But he cannot hold himself in a standing position without falling over. He has a hard time grasping objects, especially with his left hand.

The good news is that proprioception is a learned skill. It's something Garren's brain and nervous system can relearn. And he will. Over time. It will just take time.

The last several nights have been really good nights for Garren. He went the entire night without oxygen last night, and only about an hour the two previous nights. His breathing is getting stronger. We are also noticing some (not a lot yet) improvement as a result of the procedure he had done on his vocal cord last week. His voice is stronger. We haven't seen a lot of progress with the swallowing. But again, this will take time.

Pray for Garren's proprioception. That should be fun for all of you with young children who have been faithfully praying for Garren. I can only imagine how they will stumble over that word!

Vocal Cord

Garren is asleep tonight, he had a long day. We all did. We had to have him at the hospital at 7:30 this morning to check in and get ready for his procedure. We went through all the paperwork, signed our lives away again, met with the doctor, and then they took Garren away around 8:45.

The entire procedure only took about 15-20 minutes. The doctor injected a gel into Garren's left vocal cord. The left cord is the one that is not working. The plan is for the gel to push his left vocal cord toward the middle, so that both cords will come together more naturally. This is what protects our airways when we swallow.

The doctor came out and told us everything went as planned. Garren is not supposed to talk for the next two days...like that's possible! He's doing pretty good with that, but he has so much to say!

So we will see how this changes things for Garren. Hopefully it will help with his swallowing. It's a temporary fix, not meant to be permanent. The gel wears off usually after about 6 months. So we will continue to work with him, helping him with throat and tongue exercises, and praying for continued healing.

New Progress

We took Garren to Charlotte Eye, Ear, Nose & Throat today for another opinion on his swallowing and speaking problems. We figure we can't get to many opinions, and the more we ask, the more we learn, and the more help we seem to get.

We met with his doctor, who asked a lot of questions. Then he put a scope through Garren's nose and into his throat so we could see what was going on. We saw everything on a video monitor. Here's what we saw: Garren's right vocal chord is moving the way it is supposed to. Last time we looked at it, the right one had very weak movement. The left chord, however, is still not moving.

This is great news! It's progress! The doctor was very informative, and very helpful. He is going to do a small outpatient procedure on Garren next Wednesday. He's going to inject a "paste" into the left vocal chord to push it out, toward the center. This will temporarily help with swallowing and speaking, as it will help the chords to come together and seal the airway.

The doctor reassured us. He said he's seen cases like this, where one or both of the chords were not moving, or were weak. He's seen them recover fully, though it could take a year or more. Garren's young, and has that going for him as well.

We are thankful to God for more progress, even though is seems to be coming more slowly.

Slow

I'm back. I was traveling last week, took another team to Haiti - this time we helped run a medical clinic. We had an amazing trip. Each team member was touched in a special way. No one returned the same. We had the privilege of giving people simple medicine that they otherwise would not be able to get. But even more importantly, we had a spiritual impact on many of them as well. Each person saw a doctor or a nurse to get help with their physical needs. And each person was prayed for individually, touching their spiritual needs. We saw several give their lives to Christ for the first time. Always a joy!

Garren is progressing, slowly. We knew the time would come when progress would slow down. The doctors and therapists all warned us. He still progresses, he is still getting stronger, but it is just a slow process. Garren continues to go to therapy 3 times a week. Now that I'm back I can get him into a routine of walking everyday. Thursday we are taking him for a speech and swallow study. We'll see what yet another opinion has to say.

We continue to press on. I recently read a book that talked about the mysterious ways of God. Sometimes we are in a fog, unable to see or understand what is going on around us. Though we can't see the end, much less the steps in front of us, we will continue to press on toward the goal. Praise be to our God and Father who has saved us through His Son Jesus Christ.

Great Night

Last night Garren had one of the best nights he's had since he got the trach out. His body needs rest, and last night he got good solid sleep. When we spoke to the pulmonologist earlier this week, he told us to just go ahead and put Garren on oxygen for the entire night. This will give his body an extra boost of oxygen, allowing his body to get some good rest. Last night was the second night doing that.

Garren also started seeing his chiropractor this week. She is working on his neck and spine, focusing on those parts of the spine that effect the nerves that control swallowing and breathing.

And finally, Garren has started speech therapy again, this time at the outpatient rehab facility at CMC-Union. Yesterday he did VitalStim for 55 minutes, and did several execises during that time. The speech therapist fed Garren ice chips, and asked him to try to swallow them. About half the time he successfully swallowed the ice! She was very excited about what she saw. She wants to work with him for about a week or two, and then repeat the swallow test.

All of these components, working together, seem to have had a positive effect on Garren. It's nice to see improvement.

As you pray for Garren, here are a couple of things you can pray for specifically. Pray that he will continue to have great nights like last night, so that his body can rest and continue to heal.

In about a month we are planning to travel to Colorado for a wedding. Right now we have night nursing, but it would be ideal if we didn't have to worry about having a nurse when we travel. Pray that we will no longer need nursing when it comes time to travel.

Outpatient Therapy

Yesterday Garren had his first experience with outpatient therapy. Of course, the only real difference is that we drive him to his therapy now, instead of having them come to our home. It's another step toward recovery.

He met two great therapists. They are so great to work with, and they are so eager to continue with Garren's rehab.

I've ben working with Garren's walking at home. I took him to the pool last Saturday, and helped him walk in the water. He does so well moving his legs underwater. It's so good for him. We went back on Wednesday and did the same thing. One of the lifeguards commented that she could see a difference already in his walking, that he was doing better than the last time! It's amazing to hear comments like those. I also get him walking at home with the walker. Yesterday we walked out the front door, down the front steps, down the driveway, across the street and then all the way back again. About 300 feet. He did really well, though the last 100 feet I could tell he was getting tired. The furthest he had gone before that was about 250 feet.

We're still praying, waiting, and watching to see what happens overnight, while he's asleep. He has some great nights, and then some nights where he struggle a little more. I think it's just another phase that he will grow out of, just like we've seen many times already. We will continue to pray for that.

Night Time Challenges

So the trach is out. We are still very happy about that. But Garren now faces some new challenges - breathing while he's sleeping. Apparently it's pretty important! He does great when he first goes to sleep. But it seems that when he gets into a really deep sleep, he holds his breath for several minutes at a time - like he has some kind of apnea. Apnea is pretty common with brain injury. We have a nurse that stays with him overnight - and she makes sure he does continue breathing. We just need to figure out the next piece of this big puzzle. What can we do? Who do we talk to? What are the next steps? We'll be figuring that one out over the next several days.

The good news is that Garren continues to get stronger. I helped him walk, with his walker, from his bed, out the door, down the ramp to the end of the driveway. Then we turned around and walked to the front door, up the steps, and into the living room. His steps are getting stronger, his core is getting stronger. It's so amazing to see him progress.

He told us the other day that he has 3 things he needs to work on: swallowing, talking, and walking. A boy with goals - I love it!

Home Again

It is so nice to wake up at home.

Garren made through the night pretty well. The nurse has to wake him up often to help him clear his throat so he can keep his airway clear. It's just a matter of time. It's a new phase of his recovery. We got rid of the trach, and now we face new and different challenges.

Another great thing about having the trach out is that Garren can go swimming. Several weeks ago Garren was asking about going to the beach. We told him that we would go after his trach came out. So the first thing he said after it came out was "we can go to the beach now!" I'm looking forward to getting him into a pool to work on some therapy. That is going to be so good for him!

We had to take the rug out of the living room. Every time he tried to drive his chair into the living room he would catch the rug, and ended up rearranging the living room every time. It was pretty funny!

Ups and Downs

*** UPDATE ***

Garren is coming home today - we are thankful for that. We will have a home nurse to help us through the night, for at least a week.

***

Last night was a bit rough for Garren. Well, he sleeps through everything, so it was more rough for Nancy who was with him.

So the trach is gone - that's great. The problem is that he still doesn't swallow consistently or well. So while sleeping, fluids drain down into his lungs. With the trach we had access to clear those fluids throughout the night. Now he has to rely on coughing to clear fluids. While he's awake this is not a problem. But lying down and sleeping makes this more difficult.

We are not sure at this point whether we will be coming home today or not. We have to wait and talk to the doctor. Apparently Garren experienced "respiratory distress" during the night - which basically means he had difficulty breathing.

So the big prayer continues to be - swallowing. I'll update you as I am updated. Thanks for your prayers.

It's Gone!

We are all rejoicing greatly! Garren's trach has been removed.

"Nananana, hey hey hey, goodbye!"

Garren took hold of that thing and threw it on the ground! He plans to ceremoniously run over it with his wheelchair later today!

Woohoo! What a giant step! Praise God!

Thank you all for your prayers. Obviously this is a big step for Garren. We were scheduled to go home tomorrow, but we have the option to stay over the weekend for observation if we want to. On the one hand, it would be nice to be home. On the other, having so recently removed the trach, it would be nice to be near medical attention should we need it.

Garren still is working on swallowing. His talking is getting better, a lot less spelling. He continues to talk about the tickle in his throat. We continue to pray that his throat gets stronger so he can swallow soon.

Cap Test

I apologize for the delay in posting. I know many of you are on the edge of your keyboard waiting for another update. Well here goes.

Garren is continuing to run into walls and if you get in the way he will run over you in his power wheelchair. The freedom and independence it ha given him is truly amazing. He is so excited to be able to move freely about on his own. And he's getting really good and rearranging furniture. He just plows right through anything that gets in his way!

Today the pulmonologist placed a cap on Garren's trach. For the last couple of weeks, he's had a one way valve, called a Paci-Muir valve, which allows him to inhale through the trach, but the forces him to exhale through his mouth and nose. Garren has been wearing that during the day, with nothing over the trach at night. The doctor wants to leave the cap on for 24 hours to see how Garren does. basically this will simulate not having a trach, as Garren will be forced to breathe in and out through his nose and mouth. I'm not sure what a successful 24 hours will mean, but I'm guessing it has to get us closer to a trach removal! Woohoo! Continue to pray for Garren's throat and his swallow.

Tickle

Yesterday our church staff spent the day in prayer and fasting. It was a day of focus and unity. It was a powerful day in ways we will not even know. I spent a good bit of time praying or Garren. At one point, I was sitting in the room with Garren, and he said "Dad, something is tickling my throat." I said "Good!" He looked at me like I was crazy. I said "That means you are starting to get feeling in your throat!" Awesome.

He is also starting to get a little bit of feeling in the lower parts of his right leg. It's coming back, little by little, bit by bit.

Garren is really having fun with his power wheelchair. He calls it his "baby." The feeling of being able to propel himself must be exhilarating.

Today Garren tried out a new machine, called a Locomat. It's like a big treadmill, with robotic attachments around his legs and a harness that hold him up. The robotic attachments move his legs as if he is walking. The idea is to retrain the muscles how they are supposed to move when you walk. He walked in it for about 8 minutes, and it really wiped him out. It's quite the contraption!

We are scheduled to go home next Friday. We continue to be amazed at what God has done and is doing in and through Garren.

Epiglottis

Today they did the fees test on Garren. They put a little camera through his nose so that they could take a look at his swallow, and determine exactly what's going with his throat. Here is what they found:

• The epiglottis (the little flap that covers your airway when you swallow) is not moving at all
• The left vocal chord is not moving at all
• The right vocal chord is weak, but it does move some

Garren cannot swallow unless the epiglottis can move. Garren cannot remove his trach or eat until he can swallow. We are being told at this point that there is nothing we can do but wait and see if it starts moving. Obviously, this is a big disappointment for Garren. Garren told Nancy yesterday that he can deal with being in a wheelchair, but that not being able to eat is nearly unbearable.

God has brought Garren so far, and though it seems slow, we have continued to see amazing progress. Pray that God will touch Garren's throat, that the epiglottis will begin moving, that Garren will regain the ability to swallow...soon.

New Ride

Today I was able to get up to the hospital to spend a few hours with Garren. It's the first time in a week that I had been there, and it was great to see some of the progress he has made.

Remember several months back, when they fitted him with a wheelchair and placed the order? By the time that one was ready he had already progressed beyond it, and now needs something completely different. Who knew there were so many kinds of wheelchairs? So they re-fitted him today for two different kinds. One is motorized. They gave him a loaner today as well. He can maneuver quite well. So far he has run over Nancy's foot once, and he has bumped into a couple of walls. He wants to get some kind of sound effect (vroom, vroom!) for when he turns it on.

We are continuing to wade through the foggy waters of speech therapy and swallowing. They have done vital stem twice. No one is sure if it is effective for Garren or not. Tomorrow they are going to do a fees test - apparently that means they put some kind of scope through his nose, so they can watch his vocal chords while he tries to swallow. Hopefully this will give them some kind of answer?? Who knows. I will continue to pray that Garren's throat and vocal chords heal.

We met another family today whose 6 year old daughter is in PICU with a ruptured AVM. Their story sounds similar to ours, the injury seems to be in a similar location. They are 11 days into their journey. They are asking all the same questions we were asking back then. I pray we can be used as a positive influence for them. Please pray for this family.

Back from Haiti

Just got back from my first of many trips to Haiti. Earlier this year, Pastor Rob challenged Southbrook Church to IMPACT the world by going to Haiti. Pastor Rob traveled to Haiti to meet Pastor Rene, who is a true man of God, with an amazing ministry in Haiti.

Pastor Rene grew up in Haiti. As a young boy he was being groomed and trained to become a voodoo priest. When he was just a small child, a missionary gave him a piece of candy, and began sponsoring him at $15 a month. The sponsorship covered the cost of food, clothing, and school.

When Pastor Rene was a teenager, his mother became a believer. She led him to Christ, and stopped him from becoming a voodoo priest. Since the Pastor Rene has become a major player in growing God's Kingdom in Haiti.

After completing schooling in the US, he returned to Haiti with the goal of starting 100 new churches. Today, 24 years after returning to Haiti, he has helped start 34 churches.

God is moving in a mighty way. The government is asking for Pastor Rene's help in getting Bible studies started in government buildings every day of the week. An orphanage is being built that will house 100 Haitian children. It is slated to open later this year. A new community is being planned and developed that will house families, provide farmland, a church, a school for the children, along with a Bible school for training new leaders.

Our team focused on Delmas 31 Church. This was the first of the 34 churches. Pastor Rene calls this the "mother church," because it was the first, and many of the leaders have been and are being trained out of there. As I write this, our team is helping to demolish the old building, which they have outgrown. This week they will lay the foundation for a much bigger building, which will hold up to 2500 people at a time. Once the main building is completed, a school will be built. The new school building will have classes for children, technical classes for teaching trade, and Bible classes for training church leaders. The estimated cost for the entire project is around $300,000.

I am looking forward to returning to Haiti next month. I'll be taking a team of people to help with a medical clinic. I look forward to continuing to work with Pastor Rene to reach the people of Haiti, to leave the mark of Jesus Christ, as we IMPACT the world.

Hello from Haiti

Just a quick update from Haiti. The team is having a great time. We are learning a lot about the culture. And we are learning a lot about the heat! After 3 episodes of heat exhaustion, I think we have all learned that we Ned to drink a lot of water, and take a lot of breaks.

The internet is sketchy, so I haven't been able to update the blog. Right now everything seems to be working.

I am sitting by a fire in the back yard, watching corn roast. In a minute we're going to eat it.

So far this week, we have moved rock, moved roofing tin, spent some time swimming in the Carribbean Sea! I am heading home tomorrow, but the rest of the team will be here till Friday. They will be helping lay the foundation for the new Delmas 31 church. I have so much more to say about that, but will have to wait to fill you in.

I am looking forward to bringing the next 3 teams back down here. Get ready Southbrook! God has big plans for us here!

Catchin Up

I slept at the hospital last night. It's hard to sleep here. They moved Garren to a different room a couple of days ago, and now we are not right behind the nurses' station. It's quieter now, but we also see less of the nursing staff. Which means when Garren's oxygen alarm beeps in the middle of the night, we end up being the ones to get up and take care of Garren, since the nurses can't hear it. I think I got up 4 times last night.

Garren is doing amazing. He sleeps very well. He doesn't even hear the alarm, or anything else. His therapies are going great! He has walked up to 150 feet at one time using the walker and some help with balance. His hips and core are getting stronger. His steps are getting straighter. His left shoulder is weaker, and he tends to drop it forward when he is concentrating on something else. They are working on strengthening that shoulder, and we can already see a difference.

Yesterday Garren was able to get himself from his bed into his wheelchair with very little assistance. He sat up, scooted over to the edge of the bed, reached over for the arm of the chair, and slid off the bed into the chair. Simply amazing.

Tomorrow at 8:30am Garren goes for another swallow test. Things are looking very positive. If he passes the test, they will begin vital stim. Garren is very excited about the test!

Yesterday we spend 3 hours with a team of people form Union County Schools. They were working on his IEP - which is basically the plan to make sure Garren has what he needs to go back to school in the fall. All the tests and evaluations that Garren went through a month or so ago were presented in the meeting. It was like reading a history book. They described what Garren was like a month ago, but it certainly isn't what he is like now. Everyone understands that when school starts in August, Garren's needs will have completely changed.

Garren is communicating much more with his voice now. We use the alphabet card much less than before. He's still full of wise cracks. It's fun to be able to have a conversation, though slow at times.

Well, I leave for Haiti in the morning. It's always hard to be away from the family, but being away now will be even harder. I won't see Garren for 5 days, so the changes will be amazing. Thanks for continuing to pray for Garren, and for our family.

Goals

It's been a busy week. Garren is getting into the swing of things here at in-patient rehab. He is working hard. The therapists love working with him. They will say, "Are you ready to work some more?" and he always says "Yes!" They're not used to having such a willing victim!

Garren has a couple of very specific goals. These are nothing new, it's the same as we've had for some time. But now that he is here, the entire team is focused on helping him meet those goals.

Goal #1 - Swallow and get rid of the trach. Wren has been so great, and wants so badly to see Garren meet this goal. Of course, there are a lot of details and medical words for what Garren is currently doing and what he needs to do. I mostly just nod and smile. We had a visit from the ENT (Ear, Nose, Throat) doctor last night. He put a scope through Garren's nose to see what exactly is going on in his throat. The palette is working. That's a good thing. We're told his vocal chords aren't working properly. The right side is weak, though it is moving. The left side is "paralyzed" mid way. This means that his airway does not close the way it should when he tries to swallow. There are things that can be one to help. So Garren will be working hard on these over the next couple of weeks.

Goal #2 - Walk with a walker and minimal assistance. Garren is getting stronger overtime. He can walk, with a walker and help from someone, about 100 feet. He is working on strengthening his hips, so that he can strengthen his steps. It's amazing how interconnected every part of our bodies are, and how one little thing can affect so any other things (there's a sermon in there somewhere).

The plan as of now is to keep Garren until June 24. The care team reevaluates every Thursday, so that could change. But for now they have big plans for him.

As you continue to pray for Garren, please pray for Nancy over the next week. I am going to be heading to Haiti with a team from Southbrook. I'll be gone for 5 days. This leaves Nancy with a lot of responsibility.

Let's Fill The Walls (Guest Blog from Nancy)

As you know, Garren is back at Levine Children's Hospital for some awesome and intense in-house rehab. We are so excited to see what the therapists have in store for Garren and how he will respond. We thank the Lord each day for each little improvement. Somehow we ended up in the exact same room as he was in before with one big difference. It is very bare and boring. When we were in this room before we had the walls covered with the posters and cards you all had sent Garren while in ICU. Many of you have asked what can we do. Well here is an easy but important request. Let's fill Garren's walls again with color and words of encouragement. Get your kids to draw pictures (you can too of course), make a card, buy a card, whatever you like to do. You can drop it off at our house or mail it to Garren at:

Garren Janes
Room 4008
CMC-Levine Children's Hospital
1000 Blythe Boulevard
Charlotte, NC 28203

Thanks so much for caring!!
Nancy

Back in Rehab

We arrived at the hospital Thursday at 10am. After checking in, we headed up to the fourth floor. We found out Garren would be staying in the same room he was in before! So we walked into his room, set our things down, looked at each other and said "now what?" a few people dropped in to say hi, glad to see us back. Everyone is totally amazed at Garren. He's a completely different person than what they saw 2 months ago.

Then we waited. We found out through different conversations that they didn't know Garren was going to be there. They weren't expecting him, so they didn't have any rehab scheduled for him. Wren (speech) was able to spend some time with him. Nancy ended up spending the afternoon filling the nurses in on Garren's progress.

Friday was different. Garren was on the schedule, and it was a full schedule. Wren is excited with what she is seeing. She started doing some things with Garren to help him start swallowing. She also has other exercises to help strengthen throat and mouth muscles. Tara (OT) and Ann (PT) started working with Garren as well. They have some great ideas and some big plans. It's going to be a great stay.

Garren got a pass to leave the hospital tomorrow so he can go to a friends birthday party. He is looking forward to that.

Garren is doing great. He is enjoying his time here so far.

Here We Go!

Wow. After a day of phone calls back and forth to the hospital and the insurance company, we are finally approved to readmit Garren. We report to Levine's at 10am tomorrow.

Apparently the hospital was trying to fax something to the insurance company, and the insurance company either couldn't receive it, or couldn't read it when they did receive it. A fax machine was standing between Garren and rehab...hmmm.

We are all very much looking forward to what happens next.

Come On Down!

Today we are waiting for the phone to ring. Yesterday the hospital called to let us know they were discharing a patient, and once the room was available they would admit Garren. We've been back and forth with the insurance company and the hospital this morning, trying to get everyone to fill out their paperwork and get this thing official. We're just waiting for them to call and tell us to "Come on down!!"

We're all very excited about readmitting Garren to inpatient rehab. He is a little nervous, because he's really not sure what to expect. I told him to think "football camp." They'll push him to the limit, 3-4 hours each day. I can't wait to see what happens when he get there.

The golf outing is on Friday, you can still sign up today!

Then on Sunday come on out to Just Chillin' - a frozen yogurt place located near Sun Valley High School. They are going to donate 50% of the proceeds from that day to Garren's expenses. Come on out and enjoy a cold treat!

Golf Outing

Don't miss out! This Friday is the Greens for Garren golf outing. A lot of work has gone into this, and I know it's going to be a lot of fun. There's still time to sign up if you want to play.

The event will be held on Friday, June 3rd at Charlotte Golf Links at 2:00 pm.

The price of admission is $85.00 which includes greens fees, cart fees, dinner, snacks, drinks and player gift bag including a Greens 4 Garren T-shirt!

For details click here: http://greens4garren.wikispaces.com/

Fishing

We decided to have a family day together yesterday. It was so nice outside, I thought a trip to the park would be in order. I gave Garren the option: Francis Beatty Park in Mathews, or the Whitewater Center where we could go and watch the whitewater rafters. He chose Beatty. Then he made motions like he was fishing. We laughed and I dismissed the idea.

I had some chores to work on around the house, and about an hour later when I came back inside Nancy told me Garren wanted to ask me something. He said "Can I please go fishing?"

Now, fishing is not one of my favorite things to do. The lines get tangled, the hooks are sharp, the worms are slimy, and then when you actually catch a fish...blech...who wants to grab that thing? So I told him "Yes." Then I called my dad for assistance.

We loaded up and headed to the park. When we got there we found a nice little spot in the shade and spent the afternoon watching as the fish continuously removed the worms from our hooks. Kelsey caught one little fish, but other than that we had lots of nibbles.

It was nice to be out, to relax, to enjoy the weather, and enjoy each other.

Normal

Every morning when we wake up and come downstairs, the overnight nurse fills us in on how Garren did overnight. Yesterday morning she told us that Garren did something new...he talked in his sleep. She said it looked like he was having a dream. He said "Mom" then reached up his arms in the air like he was giving a hug.

I thought about this, and wondered if he can run and jump and play in his dreams. Later, after Garren woke up, Nancy told him what the nurse had said. She asked him if he had had a dream. He said "Yes." She asked him what he was dreaming about. He said "I dreamed I was normal."

We finally got an appointment with the speech therapist who is able to do vital stim. It was an interesting visit for sure. She evaluated Garren, asking him to try different things. Finally she determined that he is not a candidate for vital stim. Vital stim, according to her, will not make someone swallow who is not already swallowing. It will help make a weak swallow stronger.

Frustrating, disappointing, confusing - that describes this whole swallowing thing for us. We get conflicting information from doctors, therapists, and well meaning nurses. There seem to be so many opinions and ideas about how to handle this with Garren. We are not going to give up though. We will continue to search for and get Garren the best help we can get. And hopefully in the mean time we'll get some clear direction from someone.

Discouraged

We've entered a new phase with Garren. Reality is become more real. The long journey ahead is becoming harder to deal with. I share this with you, not so you will have pity and feel sorry for Garren, but so that you will continue to pray for and encourage him to stay strong, to keep fighting.

Earlier this week Garren told us he doesn't like therapy. I can understand why. It's hard work. I told him he needs to look at it like football practice. Even though the coaches are hard on him, they are pushing him to help him get better. He said he feels like sometimes we expect him to do things he can't do. I explained again, that yes, it may feel like that. But we are pushing him to help him get stronger. This is the first time I have seen this kind of discouragement in Garren. It's hard.

Yesterday, someone graciously offered tickets to the Coca-Cola 600 after reading this blog, and hearing Garren's story. What a generous offer! But the more Nancy and I discussed it, we're just not sure it would be a great idea. We would be in the heat of the sun for a good 4 hours, then another four hours of dark after the sun sets. I explained this to Garren, that he would probably be uncomfortable most of the time. See, this is the harshness of his reality. He is so gracious and understanding. He said "Keep the tickets and take Kara." Then he broke down. Nancy and I did to. I put my arms around him and we hugged. These are the times I want to scream. I want to go somewhere and yell. I feel an anger deep within. I just want to make it all better! Now. I told him again: "We cannot give up, we have to fight through this. God brought this into our lives, and He has a greater purpose for it. It's hard on all of us, but we realize it's hardest on you, because it happened to you. Just don't give up."

We will continue to fight. We will prevail. We will do anything and everything in our power to get Garren the best help we can find.

Right now we are waiting on two very important phone calls. One from the speech therapist who will hopefully be able to administer the vital-stim that Garren so desperately needs to be able to learn to swallow again. The other is for a bed in rehab to open up. We did find out that there will be no beds available this week. So we will wait another week.

Thanks for your continued prayers and support.

Miracle Miles 5K for Garren Janes

The weather today was absolutely perfect. Not a cloud in the sky. We showed up at Porter Ridge High School to see about 200 people gathered around getting ready to run and walk the Miracle Miles 5K for Garren.

We all stood at the start line, and got ready to go. Garren took the bullhorn, and pressed the siren button to start the race, and off we went. I was toward the front when we started. I looked back over my shoulder as we rounded the first corner. It was an awesome sight to see so many people running and walking. There were people there that we don't even know - people who have been following Garren's story.

One of the highlights for Garren was meeting Dwight Stone. Dwight is a former Pittsburgh Steelers player. After the run he came over and met Garren, talked to him for a while, and left Garren with a whole bag of Steelers goodies.

Thank you so very much to each and every one of you who came out to support Garren today. It truly is amazing to see God's love poured out in so many special ways through you all. A special thanks to Stacy and Mary, and all those who helped them to pull the run off. It was a lot of fun!

Arteriogram

Garren's arteriogram went very well. We arrived at the hospital at 6:15am and admitted him to radiology. They took us back and we got him ready for the procedure. The anesthesiologist talked to us, and then the doctor who was doing the procedure talked to us as well. They explained the whole procedure. Garren would be put to sleep to ensure that he would not move. The doctor would then insert a very small catheter into the top of Garren's right leg, right into the artery. The catheter would then travel through the artery all the way up to the base of his brain. A dye would be injected. While all of this is happening, the doctors watch on a live x-ray of Garren's head to see where the dye travels. This gives them a clear picture of the blood flow in Garren's head.

The procedure went as planned, and the doctor reported back to us that there was nothing of concern. Everything looks really good for Garren. Praise the Lord! That is great news!

They had to keep Garren in the hospital for observation until 5pm. He wasn't allowed to get out of bed until we were ready to leave. But two movies and a few sitcoms later, we made it home at last.

This morning Amy Cowman from WCNC TV came to interview us. She is doing a story on Garren. I am looking forward to seeing it on TV. It will air tonight at either 4, 5 or 6pm, and then again in the morning sometime in the 6 o'clock and 7 o'clock hours. If you are not able to catch the story live, I will have a link on this blog so you can catch it later.

I hope you are planning to come out and run or walk with us tomorrow morning. If you haven't registered yet, you can get to Porter Ridge High School at 7am and register. The run starts at 8.

If you're not a runner, maybe you'd rather go golfing? Greens 4 Garren will be held on June 3 at Charlotte Golf Links at 2pm. There are still plenty of spots, but sign up soon!

Bronchoscopy

We got to the hospital in plenty of time for Garren's bronchoscopy this morning. We checked in, filled out paperwork, and waited. Dr. Huffard came to talk to us about Garren and the procedure. He said that after reviewing the notes from Garren's swallow test that he didn't really think taking the trach out at this time would be a very good idea. If Garren isn't swallowing, then not having access to his airway would not be a good option.

We discussed the options, and decided to wait. We didn't even do the bronchoscopy. Dr. Huffard did prescribe a "Passy-Muir" valve, also called a "speaking" valve. This is a small valve that attaches to Garren's trach, allowing him to breathe in through the trach, and out through the mouth. This will help him as he begins to learn how to swallow again.

We also asked Dr. Huffard about Garren's swallowing. There is a rehab technique called "vital-stim" which is used to help people with swallowing. You have to be specially trained and certified to do this, so it is rather difficult to find a speech therapist that uses this technique. From everyone we've talked to, It sounds like Garren would really benefit from vital-stim. Dr. Huffard is going to help get us connected with someone who can help Garren with this.

Here's what I explained to the doctor: Anytime anyone has "taught" or "shown" Garren how to do something, he seems to pick it up very quickly. It's as though he literally has to be reminded how to do things. Once he he reminded, things seem to progress. I want someone who can show Garren how to swallow, to wake up those muscles, to remind him how it works, so his brain can take back over that function. So Lord willing, we will find that person who will take agressive and proactive steps to get Garren's swallow going again.

This afternoon Garren was in the garage (which has become his therapy gym). The OT and PT were there, and I was helping out. As he was doing some exercises, he become visibly upset. We stopped so we could figure out what was wrong. "Does anything hurt?" No. "Do you feel sick?" No. In the street we could hear a couple of his buddies laughing and having a good time. Garren spelled out for us "I want to play." I haven't hurt for him this much in a while. We've been doing our thing, we've been working hard, and he's been progressing so well and so quickly. I hugged him, I told him that he's doing great, and I fought back the tears.

Tomorrow we go in super early for Garren's arteriogram. It will be interesting to see the results of this test. Thanks for your prayers, I'll keep you posted.