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!