Our 2011.
We started out the year with surgery for John. They found a tumor in his spine, and some spots in his brain as well. After a seven hour surgery, that was supposed to only be six, they found that they could not remove the tumor, as it was wrapped around his spinal cord. They took a biopsy...and after a lot of consulting (he had a team of like, 20 doctors reviewing his case) they decided that it was neurosarcoidosis. This is something that will be with him forever. When things flare up, high doses of prednisone (a steroid) will improve symptoms. However, later on this year, after he had gone off prednisone, symptoms started returning, even though he was on methotrexate and plaquinil. His body is resisting treatment, and he is back on the steroids now. We are now trying to give him his methotrexate by injection instead of orally, in the hopes that his body absorbs it better this way, and hopefully, we can get rid of the steroids entirely. This is a disease that can actually go into remission, but so far, I don't feel that it has done that. He struggles to walk, and his lower extremities are comprimised. His upper body remains strong. We visit Iowa City a lot...but we just don't get the answers we want. Please, pray for him if you get the chance. 43 is much too young to feel this damned old.
JT is such an amazing young man. He stays on the honor roll, he plays football, which he loves. He had some injuries to his knee this year that kept him out of some games, but still managed to letter. I am so proud of him! He has a lot of wonderful friends that I have gotten to know, and the kid is just kind of amazing. He's compassionate, hard working...he's the apple of his mommy's eye...seriously. I couldn't ask for a better teenager. I wish that you could see him with Levi. He just loves that kid with everything he has...and that in itself is simply outstanding. Levi will be lost when JT is old enough for college....I can't even register the fact that he will be a senior next year. Why is it that you always have to find out the hard way that people are right when they say..."time goes fast..." Ugh.
Benny cracks me up...daily. He is such a witty little guy...and I am so proud of everything he has to overcome. This year, we found out that the arthritis medicine that he takes isn't enough. We had to add Humira injections. The crappy thing is the side effects. I am increasing his risk of like, six different cancers and auto immune disease. I struggled with the decision to put him on this medicine, but it really wasn't a choice anymore. His right knee was three times it's usual size...due to arthritis. We also found out that his eyes are not good enough for him to be able to drive. However, he bought a truck anyway. :) John's work was getting rid of the work truck, and sold it to Benny for $2. He named it Yamanashi and makes JT drive him around in it. It's hilarious. He is over the moon about it.
Levi is doing pretty well. He hates school...he hates talking about school...he hates having conversations, and well, if we would all just leave him the hell alone, he'd be elated. He lets us know when he wants to be tickled or teased...and when he wants to be left alone. He is actually doing awesome in school, but his classes are modified. We are so lucky to have people like Lori Soloviyov, Holly Herrick, and Jered Johnston in his life. They help me so much...and Levi honestly loves them. He is a blessing. He teaches me so much everyday...I am so lucky to have this little guy in my life...his laugh is completely contagious.
Me...I guess that brings me to ME...I am doing alright. I have a full daycare including a set of twins that are 3 months old...and another 11 month old baby...along with all the others, that is a lot of bottle feeding and rocking...but honestly, I love it. I don't get a lot done in a day, but at the end of the day, I feel like I have made a difference!! I TRY to keep up with housework...but fail daily. Sometimes I catch up, but it only lasts an hour or two. I struggle sometimes...with why we have been dealt the hand we've been dealt....but I have an amazing family...and very strong friends who hold me up when I feel like I can't anymore...could not be more thankful for that.
See? This sounds like a freakin' medical journal...and I couldn't put that on happy christmas paper...:)
Honestly, I am blessed. There are so many other things that could have happened...we have life ALTERING issues, but not life THREATENING...we are fine, and for the most part, happy!
I hope this letter finds everyone who reads it, happy, healthy and full of love.
Hoping for a blessed 2012...for all of us!!
