Beautiful day

such a pretty day outside just had to read about it and post this picture

Missed the follow-up on the last post.

In my last post we were 2 days away from a life changing surgery for my daughter. Tis little girl is the strongest person I know. On the day of her surgery she held it together and led her parents through what could have been possible one of the saddest days of my life.Instead she cracked jokes about what was going to happen and even settled down her Aunt and Uncle that came down to sit with us. Just the day after surgery she was already attempting the stairs. This took an awful lot of courage.

Now we are 4 months past surgery and she is moving around with little to no difficulty and we say to ourselves, "why did we not do this sooner?" We cannot wait until the snow is gone and we can get her outside for some running and other "kidlike" activities that have been closed to her for her entire lift to this point. Pictured below is a shot of her after meeting the Badger Womens Hockey Team. So very comfortable on her new leg. Life is starting to open up to her as she is planning on playing in the miracle league this summer.

T-Minus 2 Days

Here we sit 2 days before a major life changing event in our house not to mention Emma. So many emotions and fears racing through my head. Somewhat like buyers remorse, but before the purchase. I just need to keep focused on the reason for the surgery and how it will set her free.

Setting her free from the limits of a fragile leg must outweigh the fears I have as a parent. If her leg was good enough to keep she would have already played sports with the other kids,or gone sledding with her sisters. Putting this surgery behind us and getting through her recovery will ultimately make the sky her limit and not her leg. I have recently watched a couple things on TV about amputee's doing incredible things. The first was Terry Fox a 22 year old Canadian who after surviving bone cancer decided to run across Canada to raise money for cancer research. What an inspiration to many that you cannot let a disABILITY stop you or knock you down. The other was a man who as a double amputee climbed to the summit of Mt Everest. He was a climber and lost his legs to frostbite, he never let that stop him from doing what he loved. I hope I can take their inspiration and transfer it to Emma who can and will do anything she wants with her disABILITY.

Really, April since I last posted!

I just made the realization that it has been a few months since I last posted. Life seems to be traveling by fast. So fast in fact that another summer has come to an end and winter will be upon us. We spent Labor Day weekend at a Brain Tumor Family camp. While I wasn't real crazy about using my last long weekend of the summer to a Family camp it proved to be quite a good weekend. Lots of families like ours all seeking support from others going through the same things.

Prior to Camp we had met with Emma's Doctors because she has been having trouble with her leg. She has Pseudoarthrosis of the tibia which is brought on by the NF. This in short is a bad bone that once broke will not heal back into a union. If it does heal it will most likely become deformed. The bone has been bowing for some time and has now caused much pain in the ankle and tenderness in the leg itself. So through much discussion we have decided to amputate her led below the knee. We are doing this not to call it quits on trying but to give the the life that every kid should have. To date she has never gone sledding or played on the playground equipment with her friends at school. Gym class was always a sit on the sidelines "activity."  She will now have that chance once we get through all the recovery and her new "fake leg" as she puts it.

Media Star

A big part of our spring has been following the LU Softball Team, this has been as rewarding for us as it seems to be for the team. A week ago there was a special game between our team and the University of Chicago. Chicago also adopted a girl with the same thing as Emma. This made for a fun but busy weekend for all involved. At game time both girls were given the honor of throwing the first pitch at the game. Later they were sitting along the third base line when a photographer from our local paper wanted to get some pics of them. I stood in the background and took pics of all of them. Here is what I took.

This Is the pic I took of the Photographer for the paper. See the article here.

The Girls walking with Coach to throw the first pitch.

High Fives after all the Team Introductions are made.

Encouragement

I have posted in the past about "Friends of Jaclyn" an organization putting children with brain tumors together with college sports teams. I cannot express how wonderful this program is, it has given Emma a sense of belonging to a group that she has not had at school. It has shown the team how special good health truly is. Many Team members draw inspiration from the children that they have adopted. This seems to be so with the Lawrence Vikings. Here is Emma giving them some encouragement while at the Midwest Conference tournament. This weekend proves to be a big one for the Vikings as they host another Team that has adopted another young lady. More pictures to come after the event.

Mama's Satisfaction

While down in Gulf Shores we went out to eat a a number of places. One of our most memorable came when we made a drive up to Mobile AL. Down on Dauphin Street there is a place called Mama's. Excellent food and Gumbo. Well this is our Mama feeling all content after having the best French Dip that she has ever had. I particularly like the look of satisfaction through that MonaLisa smile of hers.

Saluda Hill

While out Geocaching in Alabama we found this quaint little cemetery at Saluda Hill. This is just outside of Blakely State park, home of the Battle of Blakely, from the Civil War. There are confederate soldiers buried in this cemetery as well as citizens of Blakely. There is one known Revolutionary War veteran also buried here. I took a photo op. while spending time here before looking into the nearby battlefield.

Dunes Sunrise

This is yet another shot from Gulf Shores Alabama. Taken over the Dunes of Gulf State Park I was able to mix the sunrise and the morning fog that had just settled in the low area's. With a hint of the housing market fallout in the distance, is a bankrupt condo that stopped construction and sat idle. How sad the beach is littered with these big high rises esp. ones that are not even being used.

Gulf Shores Sunrise

We recently went on vacation to Gulf Shores Alabama. Even on vacation I had a habit of getting up early. I used this time, instead of going to work to go out and take pictures using the warm light of the sun. This is one of my favorites from my first morning. I will be posting more as I seemed to have taken around 1800 pics in the week we were gone. Stay tuned for more.

The Scale

I am not sure why I like this picture. Maybe because it is so simple. Just a still life of a scale on the shelf in the bathroom during our recent overnight in the hospital. Maybe it is cause I was so bored with having to spend a day cooped up in the room. Who knows but here is what I took.

Frank Lloyd Wright

A recent and unexpected trip to the AFCH in Madison provided me with an opportunity to get some pictures of a FLW building across the street from the Hospital. This is the Unitarian House. I didn't have a lot of time to take  a lot but here are a couple of them. I put them in B&W to make you look at the lines of the architecture. I found this a great subject to photograph.

Sleepy

Earlier I had posted pics from Emma's chemo treatment. Two days later this is how she spends her afternoon. Sleeping on the couch waiting for the chemo to work it's way through her little body. Though it is sad to see her so tired and week, we certainly do enjoy the quiet time.

Waiting for School

I was a little bored the other morning waiting to take Laney to school. I noticed ho the light was shining in the window as she was peering out at the other kids getting dropped off at their school. She posed as I asked (at least a little bit) and this is what I came up with.

FOJ Sisters Step it up Again.

Today was a fun day. First of all see an earlier post on FOJ and the LU Fastpitch Team. We have been doing things with them for several months now and are really enjoying our time spent with them. Coach Kim Scheduled a date for us to come to an LU Basketball game. Within the time frame of the Woman's and Mens games they put on a 50/50 raffle with the spectators. At each Halftime Allie got to speak to the fans and explain what she is doing for the sick kids with her blankets while the team members sell the tickets. Emma of course spent time with some of the girls and Nick (Football Team). She even got a taste of recruiting with coach. Below are several pics from the day.

Lucky & Emma

Yesterday Emma got to go home with one of her teachers to visit her dog Lucky. She was so excited to play with Lucky she gave me Strict orders to bring the camera and get a picture of her with Lucky. She really seems to like the dogs that are little and hyper. Too bad that is the exact opposite kind of a dog that I want. This way it works better as a reward.

In the Wrong Place

In my opinion this is not one of my more stellar pictures. With that being said, The Bird and I have one thing in common. We are both in Wisconsin in the winter and I am quite certain we both think we should be south this time of the year. I am told that Robbins will stay north if they have a food supply and a warm place to stay. I guess I do have them too, and that keeps me around here in the winter. I just wish I didn't have to shovel and I could just fly around all day and poop on windshields. But I guess I go to work and that is another thing in common.

Sturgeon

Living in Wisconsin the sturgeon spearing season is much like the deer hunt. However I have never been infected with the spear. When this season arrives I don't get all crazy with stories from the past, but I do like to go to the local registration station to see what is happening. This day was better than the last couple of years. There were all kinds of folks bringing in their catch for the local DNR to count and tag. When this happens there are all kinds of folks hanging around with drinks on hand reveling in the successful fisherman's bounty. Here are a couple of the pics from the day.

Exhausted today

Today seemed like it would never end. I had to get caught up at work because I was gone yesterday so the stacks of projects just never dwindled down. Plus not really recovering from the long day yesterday. Maybe it is the cumulation of all the unrest the last two weeks have put on my shoulders. Now that it is coming to an end maybe I should go to bed?

Naw, it is nice and quiet, and I have the house to myself.  Back to the TV to fall asleep on the couch in  my nice, finally quiet house. Good Night!

2 More Years

Today at chemo we found out that chemo will last for a minimum of 2 more years, and if it is working we will keep going with it. Wow thats a long time.......we have already invested 2+ years in chemo add on a minimum of 2 more years yikes thats a long time.

Looking at it from another point of view....What's 4 years compared to a lifetime without her? I'll take the 5 or more years of Chemo..  Below is a picture of Emma holding Mom's hand just before they accessed her port for the first of her third run at chemo. The other is during her infusion.