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!