Thank you for praying for Jeremy!

Keeping Jeremy from loosing weight is a constant challenge! I was a little frustrated on Friday when he was weighed at radiation and he lost the one pound that he had gained (in just three days!). I know that one pound does not seem like much, but for a skinny growing kid like Jeremy it is a concern. The goal is for him to gain not maintain weight because he is still growing. He has his G-tube, which is helpful, but has its limits as well. We can only feed him what his stomach will tolerate. If he is sick or nauseous he will still throw up whether the food is going through his mouth or in his tube. His loss of appetite is a challenge. He will complain that he feels full after a small amount of food or feeding in his tube. I am feeding him small amounts through out the day to help with this. I am working so hard to keep him nourished and feel frustrated that he still lost a pound. Jeremy had asked me if the chocolate that he was eating had vitamins in it and I said no, but its full of calories and fat, and maybe it will help fatten you up! He thought that was pretty funny, but I was being serious!

The Neupogen shots have been helping to minimize the mouth sores and fevers, but he now has a "sun burn" on the outside and inside of his throat from the radiation. He also has fluid and pressure on his left ear (he has an ear tube in that ear). Dr. Poppe said it is from the radiation, and prescribed ear drops. Jeremy will start having hearing screenings after radiation. Dr. Poppe said that Jeremy will have hearing loss in his left ear. How much we do not know, it could be mild and he will still have hearing in his right ear. Jeremy's left shoulder is slumped due to the radiation. This might go away after radiation. Either way, he still walks really cute.... it adds character.

It is a constant effort, taking care of his nutritional needs, skin care, mouth care, and medications. We feel that our efforts are being blessed. Jeremy has been able to stay home and out of the hospital and that is a huge blessing! Thank you for all of your prayers! We believe in the power of prayer and feel everyone's prayers are helping Jeremy! He has been happy and in good spirits. He is also getting use to his shots. The last two nights Jeremy and Mike surprised me by quietly doing his shots. Each night I would say "Jeremy it is time to do your shot" and he would smile and say "I surprised you! Dad and I already did it!" I replied, "But I did not hear you cry or say no." Jeremy would say with a big smile, "That is because I surprised you!" Both nights I gave him a big hug and said that was a great surprise! This was Mike's idea, to find a way to help Jeremy get over his anxiety of the shots and to help ease my emotional stress over watching Jeremy's anxiety. I am so thankful for Mike's support! This morning Jeremy over heard me talking to the pharmacy on the phone ordering more Neupogen shots. He told me that he is not going to cry any more when he gets his shot because he learned how to be brave. I pointed to a magnet on the fridge that says "Russell-Courage" and asked if it is because he is a Russell and Russell stands for courage. He said "No, its because of me."