Evan's Progress

I know there are those who have wondered how Evan has been doing over the last 4 weeks or so. And if you haven't talked to either Debra or myself directly, you probably have no idea. So.....I'll get right to it. The last entry was the night before surgery so I'll start with the morning of. We got to the hospital around 6:30 if I can remember correctly, and we went into a pre-op room for kids and were the only ones there. We met with the covetted Dr. Bauer just before taking Evan down the hall to another pre-op area, and from there had to leave our little guy in the hands of the anesthesiologist. It was a pretty tough morning for us following the actual surgery. We again met with Dr. Bauer after about an hour in the waiting room. He described what all he had done. One 250cc capacity expander was put in, just under the scalp on the upper right side of the nevus affected area, sitting just behind and to the right, with the port(spot for us to inject the weekly saline) sitting just up from his left ear. He told us he had put an initial 30cc in the expander to get it going. From talking with Dr. Bauer all seemed to go very well in surgery, and we were told we could go and see him in the recovery area. This started a long day of frustration, not only with the hospital which didn't have a room ready for us, but with the staff, none of which spoke very good english. Evan awoke from anesthesia very groggy and fussy. We tried to console him hoping to get to a private room so we could get him a little more comfortable. What we thought would be a thirty minute wait turned into a five hour wait, pushing us to become super frustrated. After voicing our frustration with the staff (putting it lightly) we got into a room sometime after 2pm. Once we got settled in the room and the I-V in the back of his hand removed, just as we thought he was able to relax and get some sleep. To allow any fluid from building around the expander, Dr. Bauer attached a drainage tube, and every 4 hours we were to change it out. Later that evening we were able to take him back to the hotel and try and get some sleep. By the end of the second day Evan seemed to be back to his happy self. On Monday we went into to the Dr's office and they removed the drainage tube. We spent the rest of that week in Chicago waiting to be able to do the first "fill" with the Drs on that Friday. From the Dr's office we hit the road a couple of days ahead of schedule bound for home with a stop in Omaha that night. We got home Saturday evening around dinner time and got settled. Over the last few weeks we have been doing the "fills" ourself here at the house, once a week and as of yesterday we are at 145cc. Over half way there! Its been an interesting experience, and Evan has done awesome. We worry about him getting sick or an ear infection but so far so good. If all continues to go as well as it has we will back in Chicago in another 4 or 5 weeks and we will have the final surgery. Thanks to all have kept Evan in your thoughts and prayers. It means so much to us. We'll keep you posted! Hopefully sooner than later. Bye for now!

Surgery...

Well, my little boy goes into surgery at 7:30 tomorrow morning. I can't sleep and find myself packing way too much for his hospital stay. So far, he has 2 books for me to read to him, a turtle nightlight that shines stars and the moon on the ceiling, some toys, 2 outfits, 2 pairs of jammies, his blanket, monkey, etc... All of this for just 24 hours:) I just want to make sure he has anything he wants to make him comfortable. This is one of the hardest things I think I've ever had to do. Please say a prayer that Dr. Bauer has steady hands tomorrow and that Evan comes out of his surgery with no problems. Also, please pray that Pat and I will find the strength to get through this! I want to be strong for Evan and not cry in front of him. I don't want him to get scared because mommy is so upset, but I'm not sure if I'll be able to hold it together when I have to let him go. I'm sure somewhere deep down inside of me I'll find the strength and be able to do it. That's what mommy's and daddy's do:) Well, I'm going to try to go to bed. Either Pat or I will try to update the blog with Evan's progress. Thanks everyone for all your love and support through this. 

Chicago: Into the Storm.

Well, we arrived here safely in Chicago early this morning (around 1:30am) after about 18 1/2 hours of driving. We left northern Colorado early Monday morning intending on staying a little ahead of the storm that is supposed to cripple two thirds of the country as they say on the weather channel. From the get go we were in freezing rain and the wind really killed the gas mileage causing us to stop and fill up way more than we wanted too. We had an interesting trip as far as luck goes starting with our awesome idea to bring the bottle warmer in the car to heat up bottles. We borrowed a power inverter from a friend so we could plug in things into the cig lighter. Neither one of us figured the bottle warmer would require 300 watts! which as a result blew the fuse on our extra power outlet. If blowing one wasnt enough, our infinite wisdom to plug it into our main power outlet right after took out our other power source, rendering us GPS-less and unable to plug in the portable dvd player we got to entertain Zach in the back. Further into Nebraska the freezing rain wasn't letting up and the windshield visibility was ridiculous. The blades froze up and even with the defrost on full blast only a third of the glass was clear. It made it so we had to stop more often, not only to fill up because of the bad gas mileage, but cleaning the blades and buying more and more wiper fluid/de-icer.  About half way through Nebraska Debra and I thought about the power outlet situation, and getting fuses without really taking us out of the way. On the next stop (thankfully, a Truck-Stop) we picked up a variety pack of fuses, with the intent of stopping at a friend of mines house in Omaha to use his garage to get out of the wind. By now we had gone through 2 gallons of washer fluid and filled up 3 times. Just before getting to Omaha, having to stop yet again for gas and bathroom breaks we decided to tackle the fuse job right then and there. After a little arguing over the exact location of the proper fuse (Debra won) we successfully changed out the faulty fuses and were on our way. Through Iowa the freezing rain got worse but the wind died a bit, and just outside of Des Moines we decided to find a Wal-Mart or Target and get new blades thinking that would help. The GPS was great but just before turns it would update to the next part of the route causing a little confusion. So on our hunt for the closest Wally world, I (Pat) made Debra turn at the wrong spot putting us way out of our original course and we ended up stopping at a little gas station to get more washer fluid and I cleaned off the blades. Thinking all the stops were getting out of hand I picked up 3 extra gallons of de-icer, since by now we had gone through 4 gallon re-fills and wiped down the blades.  We decided against buying new blades and found our way back to the interstate. Once back on the road, for some reason the windshield was perfect and we barely had to use any fluid at all. That figured since I had just bought all the extra de-icer! With the many many stops behind us and the kids in the back being very good, we decided to keep on truckin and finish up the trip, no matter what time we got into Chicago.  Coming into the greater Chicago area, the snow thinkened and the slush started to build. The plows being on the streets actually seemed to make it worse and getting around them the streets were better in front of them...crazy. Right around O'hare a witty group of snowplows decided to form a line across all six lanes and go 25 miles an hour. As iritable as we were after the 18 hours of driving, this was not workling for us! We passed the line on the left in the shoulder and like before it was clear in front of the plows, got on our way.  We found the hotel and got checked in around 1:30-1:45am. By the time we were unloading the car the snow was coming in sideways and the temp was really dropping. Sooooo, we're here, we made it safely, and we're ready for the next chapter of this journey!

Casino Benefit for Evan

The Casino night was a huge sucess. We had a great time with everyone and the boys both did good:) Evan took 3 power naps during the party, but overall did really well. Thank you to everyone that was able to make it out that night and a HUGE thank you to everyone that helped get everything together to make this possible! We raised enough money to make a big impact on our second trip to Chicago in mid April. We have several pictures that I will work on getting posted soon. Thanks again to everyone!!

Benefit Party for Evan

One of Pat's co-workers has been nice enough to offer to host a benefit party for Evan at his house!! We are so excited! Also two other co-workers are working really hard to help plan this party. I am amazed at the love and support that Evan's condition has brought our way. The party is set for January 16th!! Just 2 1/2 weeks before we leave for Evan's first surgery. That's right... we only have about 6 weeks left before our baby goes in for his first surgery. I'm such a nervous wreck! I have so many questions... Can I wash his hair with the expanders in? I would think so considering they will be in for eight weeks:) Do I need to use a special kind of shampoo? I'm sure all of my questions will be answered in Chicago:) I'm also sure I will have a million more:) Well, I hope everyone has a wonderful Christmas!! Next year brings a lot of challenges for our family, but I'm sure there will be lots of exciting things to come as well:) Happy Holidays!!

Just too cool:)

Evan just melts my heart!! He is such a happy little baby:)

Evan Met Santa:)