Just to warn you, I am probably going to be killed for posting these pictures of Derrick. He specifically warned me that I wasn't supposed to use them on the web-- no facebook, no blog, no email. What a party pooper! If her doesn't want his picture taken, then get behind the camera, not in front of it! So, if who haven't heard from me for awhile, tell the police to look to Derrick first! 
Carson has been playing flag football since the middle of September. He is on the Chicago Bears and his daddy is his coach. It's been really fun to see how much he has improved since last year. I think Derrick was ready to kill him last year because he didn't even really have the fundamentals of catching or running with the ball down. He discovered a group of boys at recess that play football and he has fallen in love with the sport. This year he is so much more coordinated and so much better at the game. It makes it really fun to watch him. Last night he did really well defensively, pulling a lot of the other team's flags. He scored one touch down and had another called back (flag guarding, but honestly it wasn't-- the other kid grabbed Carson's arm and pulled it down by the flag before Carson shook him off). He also scored on the point after attempt.
Football has been really good for Carson. It has given him a good outlet for all of his energy. It has also allowed him to be the center of attention in our family. Hallie has a way of being the focus, but with football, it is all about Carson. As hard as it is to make sure he is to games and practices 3x a week, it has been a good thing for Carson, so I will be looking to put him in basketball for the winter. If anyone knows of any good basektball programs in Sparks that take 2nd graders, let me know.
Carson loves this picture-- he thinks it makes him look really fast!
And what is football without Tucker thinking that he is part of the team? He has to wear Carson's flags from last year every game and tries to escape onto the field all of the time-- put him in coach! Luckily, Carson and his team all adore Tucker and think it is great fun
When Derrick isn't working the weekends (doesn't happen often right now) we are trying to do more fun things as a family. A few weeks ago, we took the kids on a nature walk. They loved it and were so proud of themselves for walking the whole way! Tucker loved walking too, although we ended up carrying him off and on...
Derrick had to go to New Orleans for work the first part of October. He was gone for almost 2 weeks. I was really struggling at the time, and wondered how in the world I would be able to manage 3 kids on my own, when one of them is Hallie. She counts for about 10. Just before he left, Derrick told me he had gotten an email about a special airfare to Salt Lake and wanted to know if I wanted to take the kids there for the weekend to break up his being gone. That was extremely realistic, financially or logistically. We have pretty much decided that we will not be traveling unless it is medically benificial to Hallie. I was kind of bummed until I got this idea that my sister had the day off of school, so maybe she could come out. It took a day to figure out the details, but Cassity was able to come for a few days and spend time with us. We had a great time and it really helped me out. It broke Derrick's trip up so that I only had a few days before and after her visit. Most of all it was great to just spend one on one time with her. Where she was born 14 years after me, she and I haven't had a lot of time to develop a relationship on an adult level. I loved getting to talk to her after my kids went to bed and to hear all about her life and for her to listen to me about my life. I knew that having a sister was going to be great one day! I've loved having a baby sister, but I am really enjoying getting to know her on an adult level. Thanks for coming out Cass!
I cannot even begin to describe how frustrated I am right now. After Hallie was in so much pain last week, I really started pushing the doctor to find answers. Friday, her central line stopped working, which meant that the home care nurse and I spent well over an hour trying to draw blood. We did everything from basically hanging her upside down to taking the dressing off to try and allow any kinks to work themselves out. Didn't work. Then, I had to take her to the lab to get her blood drawn with a poke. Not fun when I had promised her no more pokeys, but we had to have the lab work that day in order to get her next batch of TPN (nutrition) mixed up. After that, I was on the phone with the surgeon's office, trying to figure out what we needed to do. I ended up having to race to the hospital to meet the apointment they had set up for us with the radiologist. He injected dye and followed it through. Turned out she had a fibrin sheath over the end of the line. It's part of the body's natural clotting process. Hopefully, the contrast was thick enough to push it away and make it work normally. We will find out tomorrow morning when the nurse comes to draw more blood.
Monday morning I spent in the GI doctor's office. Good news is that Hallie gained a pound and grew 1/2", which is HUGE for her. Bad news is that things still aren't working well, so we finally started her on an antibiotic. Of course, the antibiotic can't be found at just any pharmacy and so we got to hunt all over to find it and head to south Reno to pick it up. I have noticed that she is less agitated and mean, but not a huge difference in her bowel movements. He also sent us to the hospital for an x-ray of her belly.
We got the results of the x-ray back today. It's not great news. Part of her large intestines appears to be dilated, which means that it is stretching out. So, we get to add another drug to her regimen to try and get things moving through better. It is a drug that has black label warnings from the FDA, so we have tried not to put her on it, but at this point, we HAVE to get things moving better, or we will end up back in Salt Lake for intestinal surgery. Some of the side effects include increased irritability, mood swings, lethargy, and muscle spasms/twitches. The problem is that they aren't sure if you stop taking the drug, that the side effects will go away. Hallie has been on this drug before when she was younger and we didn't see any of the side effects, but it is still a concern.
I've been in touch with her surgeon in Salt Lake and he wants a contrast study done again. That means a tube down her nose into her intestines so that they can put contrast in and follow it through to see exactly where it is stretched out and how extensive the damage is. Depending on what they find, it could mean more surgery for her.
I am so frustrated. Right now, she is on 8 different medications/nutritional supplements to try and get her intestines to function more efficiently. Despite all of this, they are still being damaged. It breaks my heart to see her suffering and to know where we are headed with this. She can't afford to lose much more of her intestines, so where does this put her? We are hoping and praying that the damage isn't that bad and that it will be able to repair itself, but things are not looking good. If she ends up losing more of her intestines, what are our options? I know a lot of that will depend on how much of it is damaged and where, but it is breaking my heart to think about her losing any more.
We are trying to make the best decisions for her, but it seems that despite everything we are doing, she is going to continue down this road. Is it time for us to start consulting with other children's hospitals about the possibility of her being a transplant candidate? If so, which ones are the best. San Francisco and Stamford both have great pediatric small bowel transplant programs, but so does Cincinnati, where my in-laws live. Am I willing to move out there in order to give her the best chance at survival? Is that where her best chance is? Or is it closer to home, where maybe we can do a lot of commuting. I'm not sure and I think that is part of what is weighing so heavily on me right now. There is so much to think about and so many different directions that we can take her right now, and for the most part, it is up to me to decide which ones to pursue.
We are going to wait and see what the contrast study shows. If it is something that needs to be surgically repaired, we will be heading to Salt Lake for surgery. If it is not, I want to start talking to both her GI doc and her surgeon and ask them to start researching which hospitals have the best program for her case. Regardless, we will probably be setting up a time that we can go to San Fran and meet with the doctors there. That would be my first choice since they are only about 3 1/2 hours away. I have a great aunt that lives there as well, so I would not be totally on my own in a strange city. I just really feel like the time has come that we need to start exploring our long term options with her. Even if she is not a transplant candidate at this point, we need to look at where she is heading and what we need to do to take care of her.
We are really trying to have more quality one on one time with the kids. I typically spend a lot of time with Hallie, which means that she becomes very dependent on me to do things for her. She doesn't want her daddy doing them, which makes it difficult for me to do things with the boys. Derrick is great at spending one on one time with Carson, but I rarely get to spend time with him that is not asking him to clean his room, do his homework, etc. So, we decided to start date nights with the child we spend the least amount of time with.
Carson was really helpful last night, so I wanted to reward him tonight. We didn't have a lot of time, but we made it work. I let him choose hot chocolate or ice cream. He chose hot chocolate, so we went to Starbuck's and had hot chocolate and doughnuts. It was so nice to spend time talking to him. We talked about school, friends, what's going on with Hallie. I don't want to scare him, but I need for him to understand why there are times that we drop everything and run. There are times when I have to miss things of his, not because I want to, but because I have to in order to keep Hallie alive. It turned out to be a really good night and I am so glad that we did it. I feel closer to him than I have in a long time and I feel like he has a better understanding about why mom is so stressed all of the time. Hopefully, it will be a good thing all of the way around.
Next week is Derrick and Hallie's turn....
