48 February 23, 2007 at 09:52 AM EST
Ricky got almost no sleep last night from pain in the middle of his abdomen. At 5:50 am he called me to tell me it was bad. We can't figure out why. He's on all the meds and probiotics there are. They're not working. Rick(my husband) thinks he is building up antibodies to his medicines. (that has happened in the past with Remacaide) Basically he's just trying to hang on 'till the Chicago appointment, hoping they'll have something new. He's trying to get in earlier, but there are 15 people on the waiting list before him. Right now he has finally fallen asleep, exhausted. Our day is starting. He is just getting the sleep he should have gotten all night. That's how it goes. I hope he can rest today. He doesn't have to go to school till Tuesday. I pray for rest and some sign of progress these next four days. Thank you for your continued prayers.
Part of the isolation is because of the schedule he must keep. He is up, alone, all night. Sleeps when most people are up, working. He has estranged himself from all his friends, except one. This house used to be filled with his friends. I remember, he'd call home and say: 'Mom, I'm bringing my friends home.' In 15 minutes, there would be 14 cars in my front yard, the telephone would start ringing. He was the life of the party. music playing, laughter. No more.
A sombria solidão de uma doença incurável que se abateu sobre seu filho...Momentos de dor e solidão..Que Deus ponha a Sua mão salvadora e lhe dê muita fé e amparo,nessa hora,minha amiga querida.Minhas orações e pensamentos estão com você.