Wednesday, March 16, 2011

Day 6

Tomas is doing well. After several start-ups with feeds that increased too fast we are going the really slow approach. So far it is working, but it means an extra few days in here. The doctors (and there are lots) have all rounded. Tomas' stomach biopsy came back with chronic gastritis, and the liver biopsy came back with inflammation around the bile ducts. As usual it doesn't point them to any on diagnosis or direction, but this time around he is being followed by an incredibly caring GI doc. He said Tomas will go home with an appt. from metabolics (by-passing a possible 4 month wait), and he is going to call and/or email all his other doctors to get everyone on the same page, and that the time has come to stop the specialist approach and start managing him as a team. He will also be going home on a new medicine to try to keep his motility going and prevent any further psuedo obstructions. It has a very hit and miss reputation, so let's hope for a hit!

As you all know my husband started a new job on the 14th. It has been incredibly difficult, for him and for me. He was so torn when it was time to leave. I know he wanted to stay, and I know he needed to go. But God has covered us, and surrounded us with people who treat their neighbor as they treat themselves. In particular two people have helped a tremendous amount. Tomas' nurse came and stayed with him the first night Mike had to leave. She came off the clock and left her two small boys overnight to stay so Tomas would not be alone. It turned out to be his roughest night and she had to make a lot of decisions in caring for him, and she did wonderful. The next day my neighbor volunteered to pick the girls up from their day camp, keep them overnight, and bring them to camp this morning. This allowed me to stay all day yesterday and last night. I have friends and family who would be here in a heartbeat if they didn't live over 1000 miles away. Then I have all of you, this community of women. You beautiful, beautiful women. You who pray for my son, who send messages of compassion, hope and good cheer.
Words like thank you and grateful are so insufficient. Whether you know it or not, the glory of the Lord shines through each and every one of you and your kindnesses; and it shines unto this tiny person whose body does not work the way it is supposed to. This tiny person who does not have periods of illness, but periods of wellness, who has fought for so long, and been poked, tested, held down, and woken up more times than I care to think about. And what does he do with this light you all shine on him?
He shines it right back:


  1. Oh that smile.That almost constant,give me what you got and I will still smile ... Tomas,you are one amazing kid.

    And you mommy,incredible as well.Juggling and balancing and doing what you got to do.All the while doing it with that steadfast faith.

    Keeping you and the entire family close in prayer and sending love from California as you continue to gracefully move with the ebb and flow of life.

  2. It goes without saying, I LOVE his smile, it is just so awesome. Sounds like you found a winner with the GI doc, hopefully he can round everyone up and make some things happen!

  3. His eyes and his smile - to die for. So hard to see him suffer. Thank goodness for friends, neighbors & relatives to help out when we can't do everything ourselves. Praying for your family.

  4. My biggest fear is Jax going into the hospital after daddy goes to work out of state! Your doing a great job, and hopefully you'll be home soon!!

  5. Dorothy his smile always lifts me up. You continue to be in my thoughts and prayers. Big hug momma and I'm so glad he has some great docs on his side.

  6. Look at that Dumpling! I think you are so flippin' amazing! Hats off to your sweet nurse too. That's not your everyday occurrence.
    sending prayers my friend.