ALL about Caleb

Today was very trying. I had a slight case of insomnia last night & finally went to bed about midnight. Woke up at 4:30. Hit the road at 5:30 (after getting some greatly needed java) with my brother Mike and a very sleepy Caleb. Poor Mike with his excruciating back pain. What a trooper, he brought his meds along to help kill the pain (even though I know he suffered greatly). Thanks Mike!!!! Actually, the trip up there was pretty nice. Even the visit at the doctor's office. The nurse accessed his port (the port catheter is a semi-permanent line in his chest so he won't be pricked with needles multiple times). It's like a little plastic disc & you can see it slightly jutting out when he has his shirt off. Each time we go it's "accessed" by the nurse sticking the needle into his chest (I have to put on a topical anesthetic in Hondo for it to be numb by the time we get there). That's where the blood is drawn each time we go & how one of his chemo drugs is given. Yes, it's still pretty traumatic for him each time but I think it's finally getting better-he wasn't screaming so badly today. With the topical cream it doesn't hurt, it's just the fear of seeing the needle coming towards him that freaks him out. Who can blame him? Then, the spinal tap & intrathecal injection had to be done (to see if the spinal fluid looked clear (good) or cloudy (bad)...it was clear by the way-yippee! & so that the other chemo drug (methotrexate) could be administered). He's put under for the spinal stuff within a matter of minutes & wakes up pretty quickly too but then I have to wait for him to take a nap so they can monitor him & THEN we can leave. And poor baby suffers with nothing to eat or drink all morning long (& of course, if he goes without then we do too). We got there at 8:40 & left at 1:30ish. But his red blood cells were low so he needed some & we had to go to the Methodist Children's Hospital right across the street. That's where he went all crazy. I guess he thought he was done after the doctor's office...and he remembered the hospital from when he was first diagnosed....so I guess he was having these terrible flashbacks or something. Once they hooked up the blood & got it going he calmed down. He sat on my lap & got to watch cartoons & ate his Chicken McNuggets & was happy. But the happiness didn't last long. He's been in pain. He couldn't stand today either. Doctor said to monitor him, give him Tylenol as needed for the leg pain. (BTW-Thnx for the comments DJS-keep them coming-you give me peace of mind!!!) The trip home was yucky!!! We had to stop twice. My back is hurting from trying to support all 44+ pounds of him by trying to keep him off his feet when he needs to do his business. It's hard to see him suffer like that. When we got to Del Rio we picked up Caitlyn. She had a great time with Aunt Alice (Thank you so much Aunt Alice!!!). Caitlyn got to go to the store & is so nice cause she bought Cheetos for Caleb & chips for mommy & daddy. I had spoken with her earlier on the phone while I was in San Antonio & she also got to talk to brother. I can't wait for Caleb to be able to go out in public cause I know she desperately wants to go to Chuck E. Cheese. That was supposed to be our annual birthday thing with them, to go eat at their favorite place in the world, but of course...life happens! So as soon as we get the o.k. from Doc, that's the first place we're headed, mija!!! Got home & thank goodness my mom & Aunt Alice showed up to help me with the kiddoes (Chris was still at work). Gave him a bath soak cause it looked like a diaper rash might develop (again) & that was hard for him. He used to love baths until about 2 months ago. (In a previous post I didn't mention my Aunt Sharon who went to S.A. with me a while back. Thanks Aunt Sharon!!!) So finally, they went to sleep. I'm going to bed. G'night!