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!!!!!

Friday, February 20, 2009

Surgery #3 is a go!

Jake's been doing really well lately, his wound on his AVM is almost completely healed! We've been making bi-weekly trips down to Iowa City to meet with Jake's plastic surgeon, measuring how much his AVM shrinks. The doctor's plan of action was to wait and see how much it would shrink on it's own before removing the mass surgically. The first 2 weeks it shrunk a half centimeter....and then stopped.

We had some questions last week about some of the drainage on the AVM, so yesterday, the doctor who performed Jake's 2 surgeries called and asked to see him. They wanted to be sure his AVM wasn't infected from the embolizations. We (Michael, Jake, and myself) went down there yesterday afternoon, and got a good report from his surgeon - no infection, and the surgery was successful. The doctor even said that they "amazed themselves" since it's healing better than they could have imagined it. What a great meeting!

Michael called the plastic surgeon before heading down to Iowa City, to see if we could meet with him at the same time. The surgeon was teaching a class yesterday, but he wanted to see Jake, so they asked us to stop by his office around the time that his class was done. We finished with the first visit early, and headed over to the plastic surgeon's office and waited in the waiting room for about a half hour. When Dr. Hamilton came in, he was happy to see Jake. He measured Jake's AVM, and found that it hadn't shrunk any farther. It was time to schedule the surgery to have the mass of the AVM removed!

Jake was VERY happy to hear this news! The thought of not dealing with his birthmark anymore was quite appealing to him. :) He joked (rather seriously) with Dr. Hamilton that he'd like the AVM in a jar after the procedure, so he can show it off to his friends. Jake was also very determined to have the surgery scheduled for March 2nd. On that day, he had a vocal concert at school scheduled that he did NOT want to be a part of - he hates the songs, and hates the actions going along with the songs even more!

In our conversation with the doctor and his secretary, we did express that we'd like to have the surgery take place as soon as possible, for several reasons. One being the annoyance of the birthmark. For Jake's whole life, he's had to field questions, wear hats bigger than he'd like, not be able to lay on his back in bed, and not sit back on chairs. He's ready to have a "normal" shaped head. The other reason we'd like to expedite the surgery was because of baseball. Jake starts his practices on March 1st. We'd like to have him healed up before his games start in May.

The secretary and Dr. Hamilton took all of our requests to mind, and told us that they'd let us know today when we can get him into surgery. The soonest available, from what the secretary could tell, would be April 27th, but she was going to try and work some things around.

I got an email this morning around 9:00 informing us that Jake's surgery is scheduled for MARCH 2ND!!!! He got the date he was hoping for! No music concert for him! :) We're really happy about it - like we were going for, the sooner the better! It will give him some time to heal before his games.

Jake goes down to Iowa City on Wednesday, for an ultrasound of the AVM. The doctor who performed his previous surgeries wants to take one last look at it, and make sure that the blood-flow is still blocked. He and Dr. Hamilton (the plastic surgeon) have been in communication about Jake, and are "Tag-teaming" his procedures. If there are any areas of concern, the doctor will take care of them before the 2nd, so that the removal of the AVM will go smoother. He goes down again on Friday (the 27th) for his pre-operative appointment with Dr. Hamilton. During that appointment, we'll find out what time the surgery is, and what needs to be done to prepare for it.

I was telling my boss today that I have a mixture of emotions through this process. It's hard to see my child have to have surgery - it's never a fun experience. At the same time, however, I'm overjoyed that he's having the surgery done. Having the birthmark removed from his head is a MAJOR victory! Life is going to be so much easier for him after this.

It's been really cool to see Jake interact with the doctors through all this too. He's really made an impression on all of the doctors and nurses that he's dealt with. They all know him by sight, and don't even have to look at their charts to know where he's at in recovery. They all laugh at all his jokes (and rightly so!), and are wonderful at talking "to" him, not "at" him. They've all done an amazing job making sure that he's happy about the process too, they've really gone out of their way, and made him feel at ease about everything. We couldn't have asked for anything better! (Of course, it's easy for them to be amazing when they're dealing with such an amazing kid!) :)

Monday, January 26, 2009

Wrestling Practice

Chris had wrestling pracitce tonight.  He's down to 2 practices left, and he's kind of sad that wrestling is almost over.  He's really enjoyed the sport, and it's been fun to watch him have fun.

I took a few pictures tonight on my camera phone - they're not the best quality, but they're still kind of fun to see.  After a few shots, he realized that I was taking pictures, and ended up looking right at me....silly Chris!

Friday, January 23, 2009

An interesting week.

Tuesday Morning (9:00 AM):
Heather had a second interview with the local CVB (Cedar Rapids Convention and Visitors Bureau)... she was happy with the interview and left it feeling encouraged. It seemed that they really liked her and expressed quite an interest in her availability. In Heather's words: "I nailed the interview". She's quite hopeful and has an expectation of a phone call with an offer.

Tuesday Morning (9:30 AM):
We receive a phone call that Heather's grandfather was not doing well at the hospital (he had had what was thought to be a mild heart attack and was hoping to go home in the next week). Heather got to the hospital in time to be with the rest of the family and he passed away shortly thereafter.

Tuesday Afternoon: (2:00 PM):
Jacob is doing well. His birthmark/AVM is shrinking... slowly. His doctor visit (with the plastic surgeon) revealed a plan of action - the action of waiting. He wants to see if the wound continues shrink - if it does we'll continue waiting. Our next appoint with the plastic surgeon is in less than two weeks. Once it stop shrinking, we'll schedule a surgery to remove whatever mass is left over. If it shrinks a lot then, hopefully, Jacob will be left with a scar a little larger than a quarter (and hopefully smaller than a 50-cent piece).

Funeral plans began. Heather's helping her mom and grandmother with some of the arrangments - as I'm sure her brothers are (as well).

It was Heather's last day at Dental Equipment. Awkward and a bit saddening. She will miss Diane - they became close over the past year.... but she is relieved that her time there is coming to a close.

Well, nothing out of the ordinary happened on Thursday. Chris and Jacob had some entertainment with their legos and the camera.

Chris is submitting his photo to a lego creativity contest.

Jacob is starting to learn the basics of photography. He's behind the camera (you can't see him).

Friday Morning:
Heather received a phone call from the CVB.... she got the job and starts on Tuesday. It's only part time (8:30am-12:30pm), but she's looking forward to the opportunity to be home when the boys are home from school. Moreso, she's excited to be working in a professional office environment. I think it will be a great oppotunity for her to finally receive some respect for her abilities and tallents.

The Visitation. When Jacob asked what the difference was between the visitation and the funeral, I didn't know what to tell him.... "I guess we'll find out together," I explained, "I've only been to a few funerals and never to a visitation." -- It was a bit less than what I expected; but nice.... quaint.... and peaceful. I hope the funeral service tomorrow goes as smoothly.

It's been quite a rollercoaster of a week.

I feel that I've left out some details... my brain isn't functioning 100% now-a-days. I've been overwhelmed with work with Corridor Recovery...

I'm trying to complete a project (coordinated) with the Chamber of Commerce and Small Business Task Force. Meanwhile, the state of Iowa just released funds (in the millions) to be available to landlords affected by the floods of 2008. As a partner with the city (of Cedar Rapids) we've already had online landlord registration available.... now we have an online applications. Things continue to roll foward... we've established ourselves as an organization that fills a gap wherever there is need. It's good to know that we're providing worth-while services; but it's tiring. Some needed rest is sure to come - I just hope it's soon.

Sunday, January 18, 2009

♪♫♪ Baby, it's COLD outside ♫♪♫

I'm sure the news has filled everyone in - but we've been dealing with some EXTREME cold temperatures. I follow one of the local weather guys on Twitter, and he posted this the other day: North Pole Low: -16 / South Pole Low: -18 / Cedar Rapids Low: -29. Is something wrong?

Yeah, it's been a bit chilly. :)

The boys haven't had much school this past week, they had an early out on Monday, a full day on Tuesday, and have been home the rest of the week. With the dangerous windchills, we've been staying inside. It's been great, and the boys have loved not having to go to school. It's been helpful for Jake's recovery as well (which is going GREAT!)

Here are a few snapshots from our frigid week:

Attack of the Nerf guns! Jake and Chris had fun with Jake's stocking cap and the velcro Nerf darts. :)

Jake making a grilled cheese sandwich and tomoato soup for lunch. :)

Chris making "Grandma Eggs" for lunch. (Grandma eggs are named after their Grandma Deeter who made them for the boys when they were little - known to others as "Birds in a Nest", it's a hole cut in the center of a piece of bread, and an egg cooked into that hole)

Even Shiloh got to have a little fun - despite being stuck inside. :)

As much fun as this week has been, I'm looking forward to the boys going back to school on Tuesday. We're ready to get back into our routine!

The high today is supposed to reach 23 degrees: HEAT WAVE!!!!

Friday, January 9, 2009

An interesting 24 hours.

A little over 24 hours ago, life was different... the constant struggle of dealing with Jacob's situation wore on us like carrying a heavy sack of groceries up the stairs of a skyscraper. We were always wondering how Jacob was doing - hoping that he wasn't experiencing discomfort, or worse... bleeding all over the place.

Today, we're home resting with a relief and peace that will be almost difficult to get used to. Jacob is recovering well from another long surgery (over 4 hours long) that sealed the blood vessels that were causing much of the stress we've been dealing with these past 6 months.

After the surgery, we met with a plastic surgeon (same guy that we met with a couple of months ago: Dr Hamilton). He said that he'd like to see Jacob again in 1 to 2 weeks to see how the skin is progressing and to monitor any shrinkage that hopefully will occur. If we're lucky, it will shrink a bunch over the next several weeks and they'll be able to do a simple out-patient surgery to fix the skin. If we're unlucky... we're still better off than we were a couple of months ago. He'll just remove the mass of tissue and fix the skin. That just means a bit more complex procedure - but not nearly as life-threatening as these past two surgeries.

[a restful sigh]

I imagine now that we'll sleep better and things will get easier. That's what we pray for, anyhow.

We're home again and adjusting... to a new form of normalcy.

[quiet and tired: Yay!]

Now time to catch up on some lost sleep...

Thursday, January 8, 2009

An unexpected and relieving phone call... surgery # 2.

What a day.

To get everyone up to speed... I'll explain what led up to today.

Jacob has an AVM on the back of his head.

He had surgery on December 12 to have most of it taken care of.

During Christmas break, it broke and bled badly... then again it bled last Tuesday (Dec 30). We called the doctor and they scheduled a meeting for Friday (Jan 2). The doctor said that everything looks good and scheduled a second surgery for Feb 14.

However, Jacob had bleeding episodes on Sunday, Monday, Tuesday (3), and Wednesday. We communicated with the doctor on Monday & Tuesday that he was continuing to have problems with it bleeding... we even posted a video of the AVM on our server and e-mailed a link for the doctor to view. We wanted to make sure that the doctor understood what was going on and to confirm that we were handling everything properly. Initially, the doctor said that everything is okay and we may want to expect some issues. But after Jacob bled again at school on Wednesday, I e-mailed Heather and carbon-copied the doctor to let them know what had happened at school.

Bring us to Thursday morning.... 8:20am: everything seemed like a normal day: Jacob had beed dropped off at school and I was just settling into "project mode" at work... Heather and Chris were getting ready to head out for school/work when Heather got a phone call from the doctor's office. The nurse said that the doctor felt that, even though it wasn't an emergency, the bleeding is causing enough disruption to have his surgery moved up a bit -- "will today at 1 or 2pm work for you guys," the nurse asked. Heather didn't know how to respond at first.. after a quick moment to absorb the question, she told the nurse that we'll do whatever it takes to get him in today.

After giving me a quick call to confirm that we should go through with it, she hurriedly called the school and instructed them to not let Jake eat or drink and that she was going to pick him up around 11:30am to take him to the hospital for his second surgery... YAY!

I twittered (http://www.twitter/mdeeter) about the developing story before 9am. Minutes after posting the twitter (which also updates my Facebook status) I received a call from my mom called and said that she'd leave within the hour to come help and watch Christopher overnight. Thanks mom.

Christopher's curiosity (as well as a bit of feeling left out) spurned his request to go to the hospital with us. Heather and I had just discussed the night before that we wanted to make sure that Chris doesn't feel neglected with everything that's been happening with Jacob (regarding all of the attention that we've had to direct towards Jacob lately) -- so we were happy to oblige his request.

We got to the hospital and met with the doctor at 1pm. After a quick review of what was going on and what should happened it was determined that we would proceed with surgery at 3:30ish. So we roamed around the hospital a bit. The boys wanted to look out of the windows from the top floor (#8) to see how high up we were.... they found it not to be too high. However, we found that there's a small medical museum on the top floor and decided to take a quick stroll through it. It was interesting and worthy of visiting if you're trying to find a way to pass the time waiting for surgery (if you only need to wait 20 minutes... it's only two rooms of displays and artifacts).

Once the time came, Jacob began to get a bit nervous but had some comfort in knowing what to expect this time around. He ready to do just about anything to get the AVM taken care of, this surgery was a small price to pay for some normalcy in his life.

He is such a trooper - we are very proud of him. He's such a strong fellow. Heather and I have been wonering how this experience will benefit him later on in life... he's made a few comments about becoming a nurse: "I don't have any problems with blood," he commented.

Once again, he went into surgery and we waited...

and waited...

what was supposed to be a two-hour surgery ended up another mini-maraton... 4 hour surgery.

When they were finally done, the doctor talked with us and expressed his encouragement from the procedure they had completed. The blood flow is now 99% removed and Jacob will be ready for plastic surgery remove the mass within weeks. They even scheduled a consult with a plastic surgeon for Friday morning (before we leave the hospital). Yay x 2 = Hooray!

So currenly he's sleeping and seems to be feeling much better. His progress has seems easier this time around and we are all very-much looking forward to going home tomorrow.

Thanks go out to all who have prayed for us and remembered us through these tough times.

The highway robbery that is hospital food.



Side note:

We just realized that we've been here (in the hospital) for 7 hours... Getting a bit tired... At least his room has a couch in it this time - so we should get a better nights sleep.

Posted by ShoZu

The gooey remains of "fake" gravy from our un-yummy (and expensive) hospital meal... while waiting for Jacob's surgery to be done.

Posted by ShoZu

Sunday, January 4, 2009

The boys start school tomorrow - back to normal from Winter Break. :)

I was chatting with Chris tonight, and reminded him that wrestling also starts back up tomorrow:

"Oh man!  I forgot about that - bummer!" he said.

"Why is that a bummer?" I asked him.

"Well, it's just in the way being on Mondays and Tuesdays.  Those are the nights I get my best ideas!"  he explained.

He assured me that he still likes wrestling - he just wished it was on different nights.  Who knew that Monday and Tuesday were Idea Night?!

Friday, January 2, 2009

Second Surgery is a go....

I've been getting emails asking about how Jake's doing since his surgery, so here's the scoop:

His recovery has been going fairly well, he's had to deal with a lot of pain in his AVM, so he's on a somewhat regular regimen of ibuprofen. The bleeding, for a while, had been down to nothing - up until the Saturday after Christmas. Michael and the boys were goofing off, and Jake happened to move his head at just the wrong time, and Michael & Jake knocked each other pretty hard. That caused Jake's AVM to bleed pretty badly. Michael was able to get it stopped fairly quickly, and Jake was really careful the rest of the night.

We came home from Kansas City on Tuesday evening, just in time for Jake to have a major bleeding episode. The boys were playing with their new Nerf guns (gotta love Christmas presents!), and was putting on his vest for dart tag. The strap of the vest bumped his AVM again, and he instantly had blood running down his chest and his back. Jake came downstairs and let us know he was bleeding, so I went up to the kitchen with him and we did what we could to get it stopped. Normally, when he bleeds, he's able to get it stopped in a matter of a few seconds. This episode was much worse than normal. He held a dish towel on his head for almost a full minute, and soaked up close to half of the towel with blood. To be honest, it was the most scared I've been since we found out about Jake's AVM. It was a lot of blood, and it was coming fast, and not stopping. After we finally got it stopped, Michael suggested that I call the doctor first thing in the morning.

Wednesday morning, I called the doctor and talked to his nurse. She took all the information, and let me know that she'd talk to the doctor as soon as he was out of surgery. We went on about our day - going to a few stores for the boys to spend some of their Christmas money, and got a phone call around 3:00 saying that the doctor would like to see Jake, "just in case". One thing that I've been very thankful for is the fact that whenever we've had a concern, the doctor has taken it very seriously, and has not made us feel like "dumb parents". We scheduled an appointment for today at 10:30am.

We got down to Iowa City just in time this morning for his appointment. We waited for a bit in the waiting room before being called back into the exam room. We were informed that Jake's doctor had been called into an emergency surgery, but knew that Jake was coming in, and he really wanted to see Jake himself. He had his nurse take a bunch of information, and had his assistant take a quick look at Jake and report to him while he was in surgery. The process took close to an hour, and I was thankful that we had taken our video iPod and Jake's PSP with us to keep the boys occupied. After a while, the nurse came back and told us that the surgery was taking longer than he thought, and she had a pager for us so we could walk around the hospital while he finished up.

By this time, it was close to 1:00, and the boys and I were getting pretty hungry. We decided to head down to the cafeteria and grab a quick snack. We got there, picked up a couple bags of chips and a soda to share, and sat down to chat. We barely got our chips finished, and our pager went off letting us know that the doctor was out of surgery.

We made our way back up to the Neurology Clinic, and were taken back to another exam room. The doctor came in and shook Jake's hand (which made Jake feel pretty grown up), and had a look at Jake's AVM. He was very pleased with the progress the AVM has made. He said that it's much "quieter" - which meant there was a lot less blood flow! (PRAISE GOD!!!) and he said the the AVM has shrunk some too (PRAISE GOD SOME MORE!!!). Jake has a rather large sore on the AVM that has scabbed up, and the doctor said that more than likely, the bleeding was aggravated by the dry scab cracking. He said to put aloe on the sore a few times a day, and hopefully that will help to soften the area. He also gave us some gauze to use, in case it would bleed again. He said (which I didn't know) that the gauze is better to use to stop the bleeding, because the fibers in the gauze actually aid in the clotting of the blood. (I thought that was pretty interesting).

The doctor wanted to go ahead and schedule Jake's next surgery - not feeling it was an emergency, but also wanting to get it done fairly quickly. He had mentioned wanting to schedule it for February or March, with Jake's school schedule in mind. I told the doctor that Jake starts baseball on March 1st. The doctor smiled and said, "then we'll do February!"

So....Jake's next (and final) surgery is scheduled for February 12th at 7:30 am. He'll, again, spend the night at the hospital for recovery, but he doesn't have school on the 13th, so he won't be missing much (he was hoping to miss more!)

He's almost done - I can't wait for him to be able to not worry about whether he's going to bleed during an activity or not. It'll be nice to let him get back to being a kid! I'm so thankful for God's protection during this time - it's scary to think about all the things that could have gone wrong before we knew what a risk the AVM is.....but it also makes me thankful that God didn't show us what was going on until now. I can't imagine how I would have sheltered him if I knew wouldn't have been a fun childhood! ;)

Please keep praying for God's protection and peace during this. It's a lot for a kid to take on - but Jake, being the amazing kid that he is, is taking it all in stride. Once again - I'm being taught by my son!