Sunday, August 17, 2008


Well we were finally able to go home. They told us to try to get back to a normal routine. I have a hard time thinking in the old "normal" way. We are embracing a new kind of normal. I think Luke is doing much better at home. He is in familiar surroundings and seems to be more comfortable. He is still having trouble sleeping at night. He will sleep if he is being held, but as soon as he is put down he screams. I just want to hold him tight forever, but I would never get any sleep. Luke is gradually starting to take in more food. He threw up again today, but has been doing better. We have a home health nurse that comes to the house to help me with the dressing changes and flushing the line of the catheter. It's weird to me to have medical supplies in the house and it being necessary to use them. My brain is still trying to adjust. We all took a walk to the park today to get some fresh air and let Levi play for awhile. Luke enjoyed the walk, he was looking all around and enjoying the motion of the stroller.
Tomorrow we go for another session of chemotherapy. This one can be done in the office, so hopefully all will go well and we will be back at home after the appointment. Then in seven more days he will have another. We are keeping a bag packed in the car for unforeseen delays. We had to hire a nanny to care for Levi in our absence. This is all part of our new normal. I catch myself looking back sometimes and thinking how simple life was before. I think about all the silly things that stressed me out or made me upset. Then I shake myself and look forward to the miracles that God is going to perform in Luke's life. We are so blessed, and take much for granted. All we can do right now is cross one hurdle at a time. I pray for the strength to make it over the next one. About every couple of days, I lose it and I sob uncontrollably. It can feel like too much and I can't stand to see my baby suffer. But once I have it out I feel a renewed strength and determination. Luke will be healed.
Daddy and Luke. His smile makes my day!

Levi loves his baby brother, but has a hard time understanding about the germs and the bobo's on his tummy.
At the park. Luke needed some fresh air and Levi definitely needed to run and jump and play.
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