Improving

Willem is improving and I want to remind everyone this will be a long and very slow process with peaks and valleys. We are grateful for the improvements for sure.

Tuesday he basically threw up his nose tube and it had to be reinserted which they did under light sedation. Since then there have been no problems and we seem to be going along smoothly. He continues to get his formula 10 ml/hour and  his15 ml/hour of water as well as his TPN (vitamins etc.).  We want him to get off the TPN which has to happen before they can even think of sending him home.

Yesterday his friend Nick same up and visited him and they were both in high spirits battling each other on their DS's. They figured out how to sync them and off to the games they went. Pretty cool. Kids are amazing and wonderful. Yesterday Willem had math lessons in the morning, read out loud 3 chapters of his book in the afternoon, we went outside to the hospital outside game area, had Nick come visit- Wow. A full and great day.

He is now taking a new steroid, in addition to the meds (chemo, other steroids, etc.) he is already taking. This new drug is designed to be be absorbed only  by the stomach, small intestine, and colon (large intestine). The walls of these organs are swollen and inflammed and causing the blockage. It is the hope of the doctors that this protocol will help lesson the inflammation. This steroid is sometimes used in the treatment of Chrone's- which Willem does NOT have). Hopefully it works!  It will take a minimum of one (1) week to begin to see any measurable results.

School teacher comes today at 1:30 and after getting "rained out" the last two sessions we are hoping for some quality education time with a professional.

Take care all and keep the positive thoughts and prayers coming! Thank You all.