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.

Come Run With Us!

Don't forget to come out and join us this Saturday for the Miracle Miles 5K run for Garren. We're going to have a fun morning, walking or running 5K out at Porter Ridge High School. I hope you will join us!

You can click here to register ahead of time. You don't have to register ahead of time, but it would be helpful for the event coordinators to know who to expect. You don't even have to run, or walk. Just come out and join the fun!

It all starts at 8am. I hope to see you there!

Thankful

Last fall Garren pulled a hamstring. It was the last football game of the season, so he didn't miss any games. But basketball tryouts were the following week. Garren could barely walk, let alone try out for basketball. He was so frustrated, sitting on the couch while all his buddies were out in the driveway playing basketball.

When this happened to Garren, that was one of the thoughts that kept coming back to Nancy and me. Garren couldn't stand being off his feet for a couple of weeks, how's he going to deal with this?

I took Kara to get her driver's license this week. It's great on the one hand, having another driver in the house. It's quite scary on the other hand. The number one cause of teen deaths in North Carolina is car crashes. It's a risk, letting someone so young and inexperienced out on the roads. So my radar is up, and of course I tend to notice the news stories about teen drivers in car crashes now. As we were taking Garren to the doctor this past week, I was telling Nancy about one such tragic story - a little 4th grade girl in the hospital, a 17 year old young man killed, and a young driver who has to live with that guilt. When I finished telling the story, Garren started spelling out a message to Nancy:

"I should be thankful that didn't happen to me."

I was driving, I could hardly hold back the tears. My son - who just last fall couldn't stand sitting on the couch with a pulled hamstring - is sitting in a wheelchair having to relearn how to do everything. And he just told us how thankful he is that he wasn't in a tragic car crash...

Philippians 2:14 says "Do all things without grumbling or complaining." I can honestly say that Garren is a living testimony of this verse. He never complains. He doesn't give up. He pushes hard. He is so strong! I complain, all the time. Garren just does what needs to be done. He gets frustrated when we have trouble communicating. He gets annoyed with some of the nurses sometimes. He jokes about eating all the time. But he never complains.

Kind of puts a different perspective on things, doesn't it?

Swallow Testing

***I’ve been wanting to post this update since yesterday afternoon. However, the Blogger site has been having some kind of problems...sorry for the delay.***

Yesterday we took Garren back tot he eye doctor for another follow up visit. Praise the Lord - the doctor is very pleased. Garren's eye is healing well.

Thank you for your prayers as Garren went in to have his swallow test yesterday. Unfortunately, he has not progressed with the swallowing as we had hoped. They put an x-ray machine up to his throat, and I gave him a small bite of pudding. It was kind-of cool to watch the x-ray. We could see the pudding in his mouth, and then we watched as it when down into his throat. The pudding very clearly went into Garren’s airway. He didn’t react, he didn’t cough, he didn’t gag.

The result doesn’t really tell us anything, except that right now Garren is not swallowing properly. Time will tell if this function will return. I am convinced that part of the issue for Garren is that he has no feeling in his throat. He cannot feel the food in the back of his throat, so he doesn’t react when it goes into his airway. He has told us that most of his face is numb, and most of his right side is numb as well. Feeling can return, but it takes time.

In the mean time, we are going to search high and low for the best speech and swallow therapy we can find, and we will do everything we can to get Garren progressing in that area.

Kara and Kelsey went on Wednesday for their MRIs. That was an interesting experience. Kelsey went first, after some coaxing. She was all for it until she saw the big machine. Then she finally agreed to get in and give it a try. She’s 6. She can’t sit still at the dinner table. For an MRI you have to remain perfectly still for about 30 minutes. She laid down and didn't move for the entire time (all without sedation!) She did great...at least until they decided to inject her with some fluid for another type of imaging. She wasn’t expecting needles! Kara went next, and she did great as well. She wasn’t to excited about the needle either, but she took it well.

We got a call from the doctor later that afternoon. Both girls are clear. The MRIs came back with no issues. We are thankful to God for that.

Upcoming Tests and Procedures

It is crazy how busy things are. Nancy and I are constantly doing something. Now that Garren is fully aware, and communicating, one of us is nearly always with him. He has so much to say! He is so patient. He never complains. He looks forward to getting better. He asks questions about upcoming tests and procedures. He corrects our math when we are trying to help him with school work.

In the next couple of weeks there are a lot of exciting appointments coming up for Garren:

• Thursday - swallow test, to see how well he is swallowing, and to help determine if the trach is ready to come out.
• Next Wednesday - Bronchoscopy, to check his airway and decide if it's time to take the trach out - Garren is really excited about that day!
• Next Thursday - Arteriogram, the neuro-surgeon is going to examine Garren's brain to make sure there is nothing left of the AVM. If he finds anything they will determine the best way to remove it.

Today Kara and Kelsey are going to get MRI's. Are AVM's hereditary? It depends who you ask. There is no solid evidence that they are or are not. Our primary care physician highly recommended that we have the girls checked, just for peace of mind.

And one more thing! It is very likely that Garren will be readmitted into inpatient rehab in about 2 weeks. The doctors and therapist are very impressed with the progress they are seeing in Garren. They really think that Garren would benefit greatly from some intense inhouse therapy. We are all very excited about this one. Pray that it all works out, that insurance and paperwork all gets worked out.

Semi-Formal Dance

A couple of weeks ago, Garren said he would go to the 8th grade semi-formal dance if he could walk. Though Garren is working hard, and is able to walk with a walker and a lot of support, he decided to go to the dance anyway. And I am so glad he did! It was so good - for him, and for all of his friends who were there.

We started the evening out meeting with a group downtown Monroe for a pre-dinner photo shoot. They posed, smiled, laughed - and we the parents took all kinds of pictures. They all looked so good, dressed up so nicely.

Then we went to Takara Japanese Steakhouse for dinner. Now you must understand - we gave Garren the option of not going. But he insisted. He wanted to be there with his friends. Even though he couldn't eat anything, he wanted to hang out with everyone. It was fun, and he enjoyed being there.

After dinner we headed to the dance. Nancy and I weren't sure what to expect. We weren't sure how Garren would do with the number of students that would be there. We walked in, and as we were headed toward the door, word began to spread: "Garren's here!" People started to crowd around the door, everyone trying to come out at once, everyone trying to get a view of Garren.

"Everybody back up, he's coming in."

As we walked in the door, everyone started clapping. It brought tears to my eyes. I looked up and saw a couple of other adults with tears in their eyes as well. Once inside, several friends would crowd around, say hi to Garren, then take off. This happened several times with several groups. Then we were alone, just me and Nancy and Garren. I asked Garren where he wanted to go, so we ended up sitting next to the dance floor. Several more friends would stop by to say hi, then we would be left alone again. After about 20 minutes, I asked Garren what he wanted to do. He shrugged. I said "If you want to go somewhere, or do something, just tell me."

A few minutes later, he pulled out his alphabet sheet, and started spelling. "You can stay here, and Katherine can push me around." (Katherine was Garren's date.) Ok. I asked just to be sure, "You want Katherine to push you around?" "Yes." I asked Katherine - and she smiled, big. Of course! Off they went. Next thing I knew, Garren was on the dance floor, surrounded by friends. They were all laughing, talking, dancing, and having a good time. (Who wants to hang out with their dad at the 8th grade dance anyway?)

We ended up staying to the end, and Garren loved every minute of it. It was so good for him to get away from Mom, Dad, nurses and doctors for a little while. His friends were great! They loved on him, and welcomed him into their conversations without hesitation. All in all, it was an amazing night.

How Fast?

I could get used to days like this. We made it to the pulmonologist (lung doctor). He came in, took one look at Garren and said "So, does he still need that trach?" Nancy and I looked at him and I said "Well, that's what we're hoping you can tell us!"

So we talked for a few minutes, talked about Garren's progress and what he's been doing. After some discussion the doctor looked at me and said "How fast do you want to make this happen?" I was thinking "Are you kidding? How fast? How about yesterday?" I said "As fast as we can!" He left and came back with a smaller size trach. He explained that he would change Garren's trach to the smaller size, and in about two weeks we go back for a bronchoscopy, at which time he will probably remove the trach altogether! If Garren could have, I think he would have danced out of the office! We are all very excited about this.

All these weeks of hearing everyone's opinions and speculations. One visit with the one guy who really knows what he's talking about is all we needed. We are soo excited!

Water Guns and Ice Cream

Garren is cracking us up! He is so positive, and so funny! Yesterday I brought home a little squirt gun (I won it at our staff outing - my team rocked the scavenger hunt!) I didn't know if Garren would be able to squeeze the little trigger, but I tried anyway. I filled it with water and gave it to him. He immediately started squirting us. He especially enjoyed squirting Kara and Kelsey!

I needed to go to Best Buy, so I asked Garren if he wanted to go. He said sure. So we loaded up the family and headed out. After Best Buy, Kara needed to go to Target, so we headed there next. As we were walking through the store, Garren started pointing the way, telling us where to turn. He eventually led us to the freezer case. His favorite treat from Target are Dibs (little bite sized chocolate covered ice-cream bits). We all stood and had a great laugh together. All Garren can think about is eating real food. Tonight a commercial for Longhorn came on TV, and Garren said "Mmmmmmmm."

When we left the hospital, we left with lots of unanswered questions. The more we deal with the "pros" the more we realize - they are not used to dealing with people who get well, or at least who progress as quickly as Garren does. His trach has always been something that Nancy and I knew would be temporary. But we haven't been able to get any direction on how or when it would come out. Even today in conversation with the speech therapist, we hear talk as though it could be permanent. (Of course, we know it's not, it's just that we can't seem to get everyone else to understand this with us). So by the hand of God, we were able to get an appointment squeezed in tomorrow with the pulmonologist (lung doctor). After having heard how much Garren has progressed since he left the hospital, he wants to see Garren and start working on a plan for removing the trach.

The big prayer right now is that we will finally get some answers, and that Garren's trach will be removed soon. Garren told me today that he can't wait to get rid of it.

Sit Ups

Yesterday Nancy walked into Garren's room, where he was laying in bed. Garren said "Mom, watch!" She looked to see what Garren was talking about. I was on the back porch with Kara, Kelsey was in the yard. Nancy started yelling "Geoffrey, Kara, Kelsey! Come in here right away! Garren has something to show you!"

So we worked our way into Garren's room. We gathered around his bed. "Garren, show everybody what you just showed me." Garren got a little smile on his face, and sat himself up in bed! We all laughed and celebrated together! So awesome!

Garren is getting stronger everyday. He is getting taking more coordinated steps with the walker. I hold him and keep him steady. He really focuses on taking steps. Each time we do it is stronger.

Yesterday afternoon Garren started trying to tell us something. I got the iPad out and we started spelling words. "Die." Die? What are you talking about? "I would die." You would die? Why? "...for a pb and j..." You would die for a pb and j sandwich? "YES!"

We have so much to celebrate. We also have tons of questions. How do we know when the trach can come out? We are trying to navigate our way through the maze of doctors and figure out exactly who we should be asking, and what should we be asking? It seems as if they want to do things to Garren, but they give us no future plans, no "exit" plan. It would be nice to know what the long term goals are. And how to work toward them.

In the mean time, we will just continue to work with what we do know. Garren wants to be walking in time for his semi-formal dance this Saturday. That is something we can work with. I guess I better go get Garren up so we can start working out.