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!) :)

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!

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).

Wednesday:
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.

Thursday:
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.

♪♫♪ 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!!!!

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...

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.

$16.32

(sigh)

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.

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

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?!

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 sooner....it 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!

We had a fun time watching the boys open their presents at grandma & grandpa's house this morning.


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Christmas at Home

We let the boys open their Christmas presents early this year since we're going to Kansas City for the holidays. That way we can personally enjoy the giving experience for the gifts we gave them. Additionally, they're out of school now and will be able to enjoy the gifts for a whole day before a lengthy travel in some bad weather.

Jake's Surgery

Thursday night, Jake didn't get much sleep. He was very anxious for the coming day's activities. Michael stayed up with him until he was ready to sleep...around 12:30 am.

Friday morning came quickly. The family was up and around at 5:45, and since Jake wasn't able to eat anything, he was VERY hungry! We left for the hospital around 6:30ish, dropped Chris off at our neighbors house (thanks Fosters!), and started the half hour drive. All the while, Jake was dealing with an empty stomach and nerves. His tummy wasn't very comfortable.

We got to the hospital just in time to see the sunrise and for his procedure to get underway. We were greeted by a less than friendly receptionist, and were escorted to a room with 5 full beds. The curtain around Jake's bed was pulled closed so he could put on his hospital gown. After he got his gown on, we had to meet with the anesthesiologists and sign consent forms.

They then wheeled Jake back to the operation room, and Michael went with him until he fell asleep. Jake took a few minutes to fall asleep, and then he was off to surgery.

The surgery was supposed to last 3-4 hours, so Michael, Mom (Grandma Deeter), and myself went down to the cafeteria to grab some yummy (ick) hospital breakfast. We were given a pager, so they could contact us if needed. We spent a couple hours in the cafeteria, and around the 3 hour mark, I headed back upstairs to the waiting room in hopes that he'd be done soon. An hour went by, and no word, and another half hour went by, and Michael and Mom came up to see if there was any word. Nothing yet. Michael asked the receptionist if she knew anything, and she made a phone call. A few minutes later, a nurse came out to tell us that they were just finishing up, and he'd be done in about 20-30 minutes.

About a half hour went by, and one of Jake's doctors came out to talk to us. He greeted us with a "Good news, bad news" info. He informed us that they were able to get a lot of work done on Jake, and were able to block 75% of the blood flow to his AVM. The bad news of that is they found that instead of just one artery feeding the AVM, he actually has 3 of the 6 arteries in his head feeding the AVM. Since the condition was 3 times worse than they were expecting, the surgery took longer than expected (it lasted a total of 5 hrs). This would also require an additional 1 or 2 surgeries to correct, and there was a chance that his birthmark might actually get bigger in the coming weeks. (very disappointing to find out!) He told us that Jake was going to be taken upstairs to the "Post Anesthesia Recovery" area, and we can meet them up there.

We all got in the elevator, and went up the 2 floors to the recovery area. They called us in, and we were taken into the Pediatric Post Anesthesia Recovery Room. It took Jake about a full hour to be released to his room. During that hour, he intermittently said things and tried to sit up. Unfortunately, because of his procedure, he was required to lay flat for 6 hours. When he first started to wake up (before Michael and I were in the room) he sat straight up. The nurse told us that "he's surprisingly strong!" She said it took 3 nurses to lay him back down, and another nurse to hold his leg straight. The first thing he said when he woke up, was to tell the nurse that his birthmark hurt, and his throat hurt (he had a breathing tube during the surgery). About a half hour later, he was starting to be a little more lucid, and I made a comment about how big his hands are getting, he said "I'm a tough guy". Once Jake was able to answer a few questions about what his name and birthday is, and what month we're in, they moved him down to the 2nd floor to the pediatric unit.

Once in his room, Mom and I went to grab some food at Subway to bring back to eat. (It was 3:00 by that time, and the last we had eaten was 8:00 that morning). Jake slept most of the day, which was actually a blessing for him. Since he had to lay flat, being asleep helped. The few times he woke up, he was pretty groggy and went back to sleep quickly. Mom went home to spend the afternoon/evening with Christopher around 4:00, and Michael and I hung out in Jake's room for a bit, watching him sleep. Around 5:30 or so, Jake's doctors came in to talk to us about the procedure. Thankfully, this second talk with the doctor was filled with a lot more information, and was a lot more encouraging.

He said that they were able to get 75% of the blood flow blocked, which was a lot considering that it was being fed by 3 arteries. He said that the AVM will swell a bit for a week, but after that, we shouldn't be too surprised to see some shrinkage occur (yay!) and there should be a lot less bleeding (double yay!). He said that after the first of the year, he'll have to do another embolization angiogram, but at the same time they'll also attack it from the outside doing the direct puncture procedure. He's very confident that this upcoming surgery will be the final one. Since they've already taken care of 75% of the problem, this next one will be a lot less to deal with. Jake will still have to lay flat for 6 hours following the procedure, but he won't be under anesthesia as long, so hopefully he won't be out of it as long following the procedure. He also said that they would have gone longer and tried to attack the AVM more during this surgery, but 5 hours exposure to x-rays and contrast material was all that Jake would be able to handle without getting sick. Another bit of unfortunate news was that the doctor wouldn't clear Jake for skiing this month, so we're having to postpone our trip to Denver to go skiing.

Jake was still pretty out of it when the doctors came in to talk to us, so he didn't get to hear a lot of what was said. He was in and out of sleep most of the evening. He'd wake up enough to tell us that he wanted some water or ice chips, and wanted to watch a movie. We'd get the laptop out and ready to play a movie, turn around to ask Jake a question, and he'd be asleep. He finally woke up fully around 6:30...a half hour before he was able to sit up and move his leg. The nurse was nice enough to raise the bed a little for him, and help him flex his ankles periodically, so that when he was able to move, it would be a shock to his system. He was able to keep down a few bites of apple slices, and a few spoonfuls of spaghetti-o's. The nurse gave him some medicine to help with his nausea, and by then Jake was able to move about (slowly) and keep more food down. Grandpa & Grandma Thornton and Great-Grandma Jensen came to visit him shortly after, and he still wasn't 100%, so he wasn't feeling up to chatting for too long. After Grandpa & Grandma left, he slept a bit, woke up a bit, and slept a bit more. He finally rolled over to his side to call it a night around 10:00.

Michael and I stayed with him that night, and endured the most uncomfortable night of sleep we've had in a long time. I slept on a chair that folded out into a VERY SMALL bed, and Michael slept in a recliner (not a lay-z-boy by any stretch of the imagination). Jake was being monitored throughout the night, so we were greeted with bright lights periodically through the night. Around 6:30 Saturday morning, Jake said he had to use the bathroom, so Michael helped him with his IV pump into the bathroom. We were up for the day at that point.

Jake was still somewhat groggy, but he was a little hungry, which I saw as a good sign! He had half of a pancake for breakfast, but that was a bit much for his tummy to handle. Michael made him some toast, and he downed that pretty quickly. It was just right! We all waited around the room, waiting for the doctor to come and give us the okay to go home. The doctor came in around 10:00 and talked to us a bit more, telling us what to expect during his recovery. We got our discharge papers around 10:30, and headed home. Jake was still a bit out of it Saturday, spending most of his time in bed. He got up periodically, and walked around the house some, but most of the afternoon was spent in his bedroom. He wanted soup for dinner, and that seemed to be just what he needed. After dinner, he was a lot more himself. He was able to be downstairs in the family room and we all watched a movie together.

Today, Jake is even better. He's gone 48 hrs without his birthmark bleeding (WOW!!!), and he's joking and being silly with his brother. We went out to eat lunch today at his favorite restaurant, and he had a really great time! It's still up in the air whether he'll go to school tomorrow or not, but it's nice to see him getting back to being himself. My parents brought him a sketch pad and pencils while he was at the hospital, and he's just now getting to be himself enough to pull those out and start using them - that's a great sign that he's slowly getting back to normal.

We'll find out in the coming weeks when his next surgery will be. He has mixed feelings about having to go through this again. He's looking forward to being done, but not looking forward to the recovery, and especially the having to lay flat for 6 hours! His birthmark is still quite painful for him, and we're told it will be that way for about a week.

Thanks to everyone for the prayers! We really appreciate them. Please continue to pray, as he's not out of this yet. Once again, I'm amazed at how he's handling the situation. What an awesome gift he is to this family, he's taught us so much! I'm excited to see how God's going to use him further! :)

The Boys' Concerts

This is a little late... here's the video from Christopher's 3rd grade class music performance (the first song only) from November 13.




Unfortunately, the boys had used up most of the battery on the camcorder without letting us know and we didn't get it recharged before the concert... so all we got was the first song :(


Jacob's 5th grade class performance is below. I've cut out most of the performance and included only the pieces in which he played.



He's doing really well with the trumpet and really enjoys band class... but I believe that's partly because one of his best friends also plays trumpet and they get to sit next to each other during class :)

Enjoyed bowling with the family.

Surgery is a go!

We drove down to Iowa City today to meet with the Neurointervential Radiologist about Jake's AVM. Jake ended up having a field trip today in Iowa City today, so we ended up meeting him and his teacher down there. It worked out pretty well!

We met with 2 doctors, one being the head of the department (and will perform Jake's surgery.) The head doctor was very optimistic about everything. He said that placement of Jake's birthmark is very optimal for treatment, and cosmetically will be a fairly simple fix. Working with AVM's is this doctor's speciality, so that was encouraging to hear as well.

Jake is scheduled on December 12th at 7:15am for an angiogram and an embolization. He will have to stay overnight for at least 1 night, with the possibility of having to stay over the whole weekend. They are hoping to take care of the whole AVM with the initial embolization, but may require a second embolization that will be done through "direct puncture." During the angiogram, he will have the catheter run up his artery through his leg, and they will be taking constant x-ray pictures to see how the mass is shaped. Then, for the embolization, they will inject glue (which is chemically very similar to Krazy Glue) into the AVM and it will solidify and block the blood flow to the AVM. The procedure, we are told, will last approximately 3-4 hours. He will be under general anesthesia, so he won't feel anything. They will keep him over night that night to observe and follow up with the procedure, and if necessary do the direct puncture embolization on Sunday. Direct puncture would be less invasive, and as the name indicates, involves the glue to be inserted directly into the birthmark via a needle.

The doctor was optimistic that, given time, the embolization will take care of a lot of the mass of Jake's birthmark. He said that we may need to have some excess skin removed eventually, but he should see a big improvement in the weeks and months following the surgery.

Jake, again, was simply amazing during the appointment. He is so grown up and mature - and the doctors and nurse noticed. At one point, when the doctor was telling us about the direct puncture procedure, I leaned over and joked with Jake that if they do that, he might hear a hissing sound from all the air coming out of his birthmark. Jake took the joke from there and said that if they're not careful, he'll go flying around the room like a balloon. Jake took both doctors by surprise so much, that they both stopped mid sentence to laugh at Jake's joke, and tell him what a funny guy he is. The head doctor even said that he was impressed with Jake's sense of humor, and most patients (even adults) really freak out and get scared when they hear about how the procedure is done. It was pretty neat to see him interact and react to such weighty information.

He had to have his blood taken for some lab work for the procedure. He was quite the trooper in getting another needle prick.

We left the hospital feeling optimistic and thankful that Jake will have some relief. This has been weighing on him for quite some time. He's happy to have an end in sight!

Please keep praying, as the bleeding is still an issue until the embolization is done and is successful. He's getting pretty frustrated with having to deal with it. He'll be glad to not have to carry a roll of gauze in his pocket, "Just in case."

I'm sure Michael and I will have a laptop with us at the hospital, and will keep everyone updated as he goes through surgery and recovery. Thanks to everyone for all their prayers for Jake. They are greatly appreciated!

Blood pressure.

123/73

Jacob is excited.

At the hospital talking to doctor about Jacob's AVM. Looks like we're finally gonna get this taken care of. Jacob's excited.

Christopher's first wresting practice

Squat and Shoot
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Snow crab legs (continued)

Christopher got a kick out of the claws that were pulled from Jacob's meal.

As he used the claw to pick up and eat his French-fries, we discussed whether the claw is a simple machine or a compound machine. His education learned from www.edhead.com at school tells him that it's a simple machine.