Ahh...

Yesterday was the first day that I felt like I had a new lease on life. The acute pain from Monday was gone. The chronic pain I am used to feeling had slowed. And I could actually take a deep breath....ahhh. I was able to check email and start to catch up on all I missed. I read one of Anthony Bourdain's books on food and travel. The children arrived and we had a lot of smiles, stories and good laughs. I received a card from one of the girls I've coached over the past few years - saying she hopes I get better and that she misses me. It was a good day. This weekend the kids are going to have plenty of stories. They are off to downtown with Grandma to the Lego and American Girl store. My Aunt, Uncle and cousin are visiting from Iowa so I will get some new stories from them. Through the past few weeks, my conviction that life is good has not changed. It sure can be frustrating some times. But through these frustrating experiences we can see the beauty of the moments when lives comes together and the smiles flow.

Making Progress...

It feels like we have made progress today. : ) Overall, Matthew is feeling MUCH better, he is able to eat and he has more energy. We met with the nutrition team and it was decided to start up with tpn again (nutrition through his picc line). Tpn will help improve his overall nutritional health and help him gain weight (he has lost 20 pounds since the beginning of April...he really doesn't have 20 pounds to lose, so tpn along with eating should help him gain back the weight). The doctors are pretty sure all the swelling in Matthew's hands/feet are a result of his crohns disease. Bloodwork results are negative for infection and his body is responding well to the prednisone. The scopes showed inflamation in his intestine so they will do another scan of his belly tomorrow (we are praying everything will come back clear). The steriods along with starting a crohns medication should help him to continue to heal and improve. There are a few different biological drugs that are used for treatment of crohns disease. Because the cimzia he had been on doesn't seem to be working, the doctors are starting him on remicade (an infusion drug that they are giving him tonight). Remicade tends to show results fairly quickly (Matthew had been on remicade before and had positive results), we are hopeful he will have good results again. Thank you for your prayers!

A quick update

The good news of the day is Matthew feels better than he did yesterday (thanks to the steroids and pain meds.) The not so great news is that the scope showed a small area of active crohns in the intestine. The doctors still are not sure what is causing the swelling in his hands & wrists and will do another round of steroids tonight. We are hopeful that we will soon have some answers, although the theme seems to be about waiting....so we will try to wait patiently. Our friend Deb (who certainly knows her share of loved ones health struggles, but who handles it with such grace), emailed us today. I am closing with a quote from her, "...the road continues to turn and bend. The good news is, you still have a road!". Wise words to remember - thank you Deb. Thank you all for your prayers, love & support!

In a room...

It was a really LONG day of waiting at U of Chicago, but Matthew finally was admitted to the hospital in the early evening. The doctors are still trying to determine the cause of the current problems he is experiencing and will need to do a few more tests/procedures. After the day of sitting and waiting (which can be a bit discouraging), we were so thankful that he was put in a single room, and that he had a very kind and caring nurse. Matthew's mom is able to be with him for support as well, which is a blessing. The doctors gave him some pain medication and will be giving him a dose of steroids to help reduce the swelling and aching in his joints. He is having an x-ray of his belly tonight and tomorrow will have more cultures and some scopes. Hopefully these tests will provide the information the doctors need to proceed with a treatment. We are so thankful for the wonderful care & support from all of you....our family, friends, neighbors & work colleagues. Thank you for loving and helping our family through this journey!

Back in Chicago

This is Amy posting today : ). Matthew & I are at U of Chicago waiting in the doctor's office. The plan is to admit him to the hospital....but we are still waiting at this point. Matthew has had some health difficulties (not related to his crohn's), the past few weeks. A sinus infection....swelling in his feet and hands...fatigue... There have been doctor's visits in Holland, antibiotics, a trip to the ED at Holland Hospital and even a new Picc line put in through IV Radiology. And yet, there is still something not quite right.....so we headed to Chicago today to see Dr. Hanauer. The decision was made to admit him to the hospital and run some more tests... And so we wait... We will update more once we have some information. We are grateful for the prayers.

It has been a long time

It has been a long time since I posted anything. I am not sure why, but I think it has something to do with the hard work I've been doing.

When I say hard work, I'm not necessarily referring to my paid position, but the reflection going on in my head. It's hard for me to write when you don't feel confident on what you would state. Don't get me wrong, I've had lots of ideas that I started to turn into real thoughts, but then I would get tired and the thought would pitter out; or the weather would turn to 80 degrees and I would spend time outside; or I guess I just would slow myself down to ponder and not find the time to complete any one idea, and turn it into something I felt comfortable sharing in perpetuity.

Maybe you are wondering what is he talking about? Well, in the fall of 2011 I was challenged by the UPMC staff to 'reinvent Matthew' and I've been working on it. It's the hardest thing I've ever done because no one can say when you are successful. I can slow down, take one day at a time, smell the roses, worry about myself, pick a different saying and feel good. Or I can do some really important work, and feel good. I may only work part a day, but if its a yucky subject I can come home miserable and start to feel bad. I can find tons of enjoyment from my children at a swim meet or bball game, and they can drive me nuts later the same day.

What I'm trying to say is that I'm attempting to identify a rhythmic beat to my life that works more than one that doesn't. And that is only done by trial and error with success determined by how one (and who) evaluates your life. Each day is a new one and I'm still working to figure out they rhythm that works.

Going Home

I got the word today - I get to go home. Holland Hospital is nice, but I prefer the old house on 18th Street.

Fortunately, we were able to catch this bug before it got out of hand, but we can't figure out where it came from. The good news is I do not have an abcess per the CT Scan. But where oh where does this come? Guess it will remain a mystery for now.

Plans for the weekend are getting some rest and trying to catch up as best I can. G has a big swim meet and E has bball - so being a good dad will be a priority too. Plus, I owe Amy a lot. Good thing next week is Valentine's Day.....I'll need to make sure it is a good one.

Thanks for all of your prayers and good thoughts.