Wednesday, April 22, 2009

A nice night to go to a park

Michael had to work late tonight, so the boys and I took the opportunity to use a gift certificate for a local restaurant that I had won on a radio contest. The restaurant is right here in Marion, and I've heard of it, but had never eaten there.  The food was okay, nothing really spectacular.  We were thankful that our gift certificate covered the whole meal however.  I wouldn't have felt comfortable paying for it.  We'll just leave it as a place that was nice to try, but we won't go back.

Next to the restaurant is a park that the boys and I had been to several times.  This is the main park in Marion where a lot of festivals are held.  Whenever we go the crowds are so big we don't get a chance to just "sight-see".  It was a beautiful night tonite, so after dinner we walked over to the park to check things out closer.  There is an old caboose there, that the boys have always wanted to look at, but didn't have the opportunity.  I let them have at it tonite!  Thankfully, my phone takes decent pictures, so I was able to capture a few shots (you can click on the pictures to enlarge them):

This picture cracks me up - Jake is serious in the foreground, and Chris is in the background doing his best "Vanna".

Thursday, April 16, 2009

I was gonna...but then decided not to....

A couple of our family members have been "encouraging" me to write another blog post. I've been meaning to for weeks, but have really had a reservation in my heart about the format in which I was planning on posting. You see, I had it in my mind to post all kinds of pictures of Jake's AVM - and the progression of the AVM through these past months. I was going through pictures, trying to find the best ones that weren't too graphic, but represented well his struggle of living with such a burden. During this whole time, I had a feeling in the pit of my stomach that maybe I should hold off. I learned a while ago that a lot of times, when you have that "gut" feeling, that's the Holy Spirit speaking to you.

My intentions were good - I wanted to post something that I would consider to be a monumental praise report to everything God has done with Jake (and the whole family) since finding out about the AVM. I wanted it to be a story of pictures that would promote emotions of gratitude and relief for how far Jake has come. But yet, amidst these good intentions was an overwhelming feeling of hesitation. I kept putting off my post.

And then Tuesday night, I realized why.

Jake had a scrimmage for baseball, and it was a very rough night for the two of us. Michael and Chris had gone to Michael's softball game, and I took Jake to his scrimmage. The evening started out well enough; Jake got to wear his uniform for the first time this year (and oh did he look handsome!) We got to the diamonds in time for him to warm up, and things seemed to be going well. During the 3rd inning, things took a turn downhill. Two of the families on Jake's team, decided to bring their dogs with them to the scrimmage. One family had a beagle, and the other family had 2 pit bulls. Long story short, one of the pit bulls got loose, and attacked the beagle. It was horrifying! It happened about 10 feet away from all the boys on the team. Thankfully, the beagle is okay, but it was not a good image to have embedded into memory. In addition to the dog attack, Jake didn't get much playing time. He was very disappointed. (They had to call the game early due to darkness). He did, however, get to bat once. I did my best to take pictures from afar, and after the game, as I was trying to cheer Jake up, I was showing him the pictures.

I had also taken pictures of Jake before the scrimmage as well. He looked so very handsome in his baseball uniform, and I wanted to show him how great he looked. When I cycled through the pictures on the camera, I mistakenly went the wrong way. At that moment, I realized why I had a check in my heart about posting pictures of Jake's AVM. In my error of cycling the pictures in the wrong order, we came across pictures of Jake's AVM. Jake was so disturbed by it, he had to look away. Quickly, I tried to cycle through the pictures to get away from them, but since this has been a long process, many AVM pictures were sprinkled in with our regular, good time pictures. Each time a picture of the AVM came up, he had to look away.

Thankfully, at the end of this, we were able to end on a great picture, that left him with good feelings instead of the disgust he was feeling. But it was a solid confirmation to me.

As I prayed about this, trying to figure out how exactly I could post a glowing praise report, God really laid on my heart that I can praise Him with words and actions as well as visuals. As dramatic as a visual in this case may be, it's closer to God's heart to guard Jake's heart. I can't do anything that will cause him hurt or grief. As his mother, it's my job to protect him against such things. God brought to my mind a verse that I never had thought of in this context before: Ephesians 6:4 "Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord."

I've read this verse tons of times, and really never thought much about it. It wasn't a "refrigerator" verse that you hear quoted a lot. But God really touched my heart with it today. He made it clear to me that in my case with Jake, it would provoke Jake to anger if I posted pictures that wouldn't be uplifting to him. That I'm bringing him up in the instruction of the Lord by listening to the Holy Spirit speak to my heart, and holding off on my plans. In this situation, by doing what's best for Jake's heart, I'm following God's will. Wow!

So, all that to say that I apologize for my delay in posting an entry - but it was a good delay. God was in it, and He's once again, proven Himself to be a loving and tender God. He's also given me another opportunity to praise Him. Not only did He heal my son (and oh how I praise Him for that!), but He's alive, and speaks to my heart in very real ways! What an amazing gift He's given me by simply loving me.

And - in honor of Jake's miraculous healing, I'm proud to post these wonderful pictures of him, ones that I know he loves.

Monday, March 2, 2009

The AVM is GONE!!!!!!

Jake had his third surgery today, to remove the AVM. Going into this surgery, we were warned of the risks. The ultrasound on Wednesday revealed a vein was still being fed in the AVM, and there was a risk of Jake bleeding during the surgery. To help prepare for this, his blood type was taken, and the blood bank was made aware that there might be a need for a transfusion. The doctor explained to us also, that Jake would more than likely have a half dollar size open wound from taking off the mass of the AVM. He told us he would do his best to get it as closed as possible, but we were looking at another surgery or two of reconstruction.

We woke up at 5am this morning - none of us ready for the day. Being a family of mostly night owls, it was not an easy task. We were out the door, and on the road around 5:45, ready to be at the hospital at the 6:30 call time.

Getting into the hospital, we went right up to the OR check-in. They led us to a room for Jake to get his gown on, and we waited for his turn to be called into the OR. At almost 8:00, we met with the anesthesiologist. He was great with Jake and really put Jake's nerves to ease. Jake and Michael went back to the OR around 8:10, and Michael sat with him while he fell asleep.

After checking in at the OR Family Lounge (on floor higher), we went down to the cafeteria to get some breakfast. Since Jake couldn't eat anything after midnight, the rest of us did the same. Michael, Chris, and I ate a typical hospital cafeteria breakfast (not quite a "yum"), and headed back up to the lounge. We got settled in, just in time for Jake's doctor, Dr. Hamilton, to come find us. He had a thought about what could be done after the surgery to help speed the healing process of the wound (which again, he estimated to be around the size of a half dollar.) He let us know that they were starting late, and that they had just got Jake positioned correctly (he had to be on his stomach, since Dr. Hamilton was working on the back of his head.) Shortly after, Dr. Hamilton's secretary also stopped by to let us know that they had just started.

It looked like it was going to be a long day.

A few hours went by, and we all got a bit stir-crazy. Chris had played about every PSP game we had with us, and Michael and I were a bit tired of sitting as well. By that time, it was about 11:30, so we decided to go grab some lunch. We had found out from the gal in the Family Lounge that there was a better cafeteria located on the floor below us and decided to try it out. It was by far, much better food. We wished that we would have known about that cafeteria about 3 surgeries ago! :) We had a decent lunch, and headed back to the Family Lounge. Again, we got there just in time for an update. Jake was doing well, but we had no idea what time he'd be done.

Around 1:00, Dr. Hamilton came up with his camera. He was done! He turned on his camera, and showed us a picture of the back of Jake's head....he was able to close the wound COMPLETELY!!!! The AVM had actually swollen up during the surgery, and he said it was a bit difficult to work on, but once he got the outer edge of the AVM separated, the rest was easy sailing. He said that the vein that was still being fed was actually quite large, about the size of his pinky finger! He said there was some glue in the vein, so he tied up the vein with sutures, around the same area as the glue, and reinforced it with more sutures, so that is completely closed off. He said that as Jake heals, that vein will just become a dead end as tissue forms around it. He was quite amazed at how nicely Jake's wound closed.

Jake will have about a 9cm horizontal scar on the back of his scalp, but he was able to pull the scalp enough, that Jake's hair should grow nicely, and cover a lot of it. He said he wouldn't be surprised if, after a few months, he could have a haircut as short as Chris'! The best news of all - since the AVM was gone - there wasn't any need for more surgeries...HE'S DONE!!!!

On a humorous note, Dr. Hamilton knew that Jake wanted the AVM in a jar to bring home and show his friends. After the surgery, as per standard policy, the mass was to be taken to Pathology for study. Dr. Hamilton ran down to Pathology in hopes of getting the AVM for Jake, but was too late. Michael and I both thought it was very thoughtful for the doctor to indulge in a 10 year old's request - even though he wasn't able to fulfill it, it was a blessing that he was willing to try!

Waking up was a bit difficult for Jake. They had him wake up before we were in the room, and that scared him a bit. We were able to go in the room shortly after, and hold his hand. Chris was even able to be in there with us, and I think that helped Jake a bit as well. Since there was a lot of equipment, and technically, Chris wasn't supposed to be in the room (nobody under the age of 12 was supposed to be in there), Chris and I went out to the waiting room while Michael remained with Jake. It took a couple of hours for Jake to recover enough to be released to come home.


We're home now, and Jake's slowly getting back to normal as he can be with a swollen face (from being on his stomach for over 4 hours) and a huge bandage on his head. He's in really good spirits, and has enjoyed some chicken noodle soup. We go back to the hospital in the morning, to meet with Dr. Hamilton for his post-op check-up. Dr. Hamilton will remove the bandage then, and teach us how to care for the stitches and staples over the next few weeks.

We're so grateful that this is over for Jake, and that the wound was able to be closed completely. I joked with Dr. Hamilton that we're 10 months ahead of schedule now! It's such a relief to see the end of this. We've been so blessed with such amazing doctors, I can't begin to express our thanks to God for this! All the prayers of our friends and family have been felt every step of the way, and have been a real life line in this journey. Thank you, all of you, for all your support!

We're looking forward to these coming weeks of Jake healing. Dr. Hamilton is very hopeful that the stitches will heal nicely. The downfall of it is that we're going to have to shave/buzz Jake's hair, since so much of it had to be shaved off for today's surgery, Dr. Hamilton suggested we just take the rest of it off so that all his hair can grow out together, and be more manageable. Jake has been wearing a hat for some time now, since he's had to deal with the wound on the AVM. We were anticipating another open wound, and fully expected Jake to have to wear a hat for a lot longer. Well, he'll still wear the hat, but hopefully for not longer than a month - just long enough for his hair to grow out some.

I can't get over how faithful God is! He's simply amazing! I can see in Jake's eyes already, the peace overtaking him, knowing that he's done with this horrible ordeal. He's even joking and giggling at cartoons on tv tonight! Michael asked me this afternoon if I had a good day. I told him I did - because my baby is okay! Praise God!!!!!