Our radiation appointment this morning was changed to 6:30am, which meant we had to be there by 6:15am. So, we would normally have gotten up at 4am to start getting ready. However, Caleb woke up at 2:15am and would not go back to sleep! He played with the kitten in the living room for about 45 minutes then asked if he could play Lego Star Wars on his computer. My first inclination was, "Of course not! It's not even daylight outside yet, go back to sleep, PLEASE!" However, Richard whispered to remind me that playing that games requires that Caleb use both hands and all 10 fingers to play. We've been searching for ways to get him to use his right arm and hand, so I said, "Yes, just close your door and don't wake up your brother." Richard got up to watch him play and said he played for about 30 minutes. That's MAJOR around here right now.
I got up about 3:30am to start getting ready for the day. I woke up in a severe amount of pain today so I knew I was going to be moving slowly and would need the extra time. Got breakfast & lunch fixed for Caleb since Thursday is also oncology clinic day. Fixed lunch for Caden for ELC (early learning center). Woke Caden up to change his diaper & discovered he was soaked from neck to toe, so he got a quick bath before we had to leave.
My wonderful neighbor, Nell, came over about 4:45am since she agreed to take Caden to ELC for us & pick him up if we're running late. I gave her instructions on what was needed while Richard finished getting Caleb & the truck ready for us to leave. Caleb fell asleep in the truck on the way to radiation. We got there and he was in a very playful, fun mood (which I've not seen since he started radiation)! He laughed & joked with the staff and snuggled under a warm blanket. We ALMOST got him to race Dr. Murphy down the hall. Caleb changed his mind at the last minute, but we blamed it on Dr. Murphy being late getting to the room. ;) Once we got into the radiation room, Caleb asked if he could move himself to the other bed. He's never done that before! He's usually already sedated by the time they move him to that bed. It's custom fit for Caleb's body to help keep him from moving around. He crawled over to the other bed, stretched himself out, and declared, "I don't like this bumpy bed!" He sat up and tried to get off, so Dr. Murphy started giving him his "head-tingle sleepy medicine." He fell asleep sitting up.
As Caleb was coming out of sedation after radiation was over, he didn't remember that he'd already had treatment. He started yelling & hollering that he wanted to go to the room with the trees (there are trees painted on the ceiling of the treatment room). Richard said he did the same thing yesterday. He was a bit more disoriented than usual and even Dr. Murphy isn't quite sure why. When Caleb finally woke up enough, he ate a small breakfast -- PB&J, yogurt & 1/2 glass of milk.
We've been working on scaling back the amount of food he's eating. It seems to be working for now. Since we've been steadily reducing the steroids, he's not eating as much or as frequently. Now, if we could just him to start moving around more.
We left the treatment center & headed over to the oncology clinic for our 10:30am appointment there. Since we had almost 2 hours before our appointment, we went to the food court so Richard & I could grab a small bite to eat. We won't eat or drink in front of him when he can't have anything. Caleb added a cinnamon roll to his breakfast tally.
I headed up to Cardiology to find out the results of his Holster scan (the device he had to wear last Thursday night). It had been read, but the doctor hadn't signed-off on it yet, so they wouldn't tell me anything. We decided to let Dr. Leger find out for us & headed to clinic.
Caleb's weight is up to 51 lbs now. That's a 3 lb increase in 1 week. I'll really be glad when we're done with the steroids! We met with Dr. Leger and she told us we could decrease the steroids again!! We're down to 1 milligram twice a day. He's still tolerating the reduction well. No increase in headaches, no vomiting, attitude improving, appetite slowly decreasing. She checked on the cardiology results and basically said, "no news is good news." She said if there had been a problem, we'd have been notified earlier. Since they haven't called to schedule an earlier appointment than December, things must be okay for now. That's a huge relief.
Today also marked a new achievement -- we got off the hospital property before 1:00pm! Since next week's appointment isn't until 11:00am, I don't expect that will happen again.
We got home, ate lunch & Caleb took a nap. He's had dinner & is watching Transformers (the original cartoon series) with Richard & Caden right now.
This is definitely a wild roller-coaster ride. My emotions run all over the place. The thing that keeps me going is knowing that God is in control. Somehow this will all work out. God has a purpose & a plan for our lives and we will walk in that plan.
Thank You, Lord, for keeping Your loving hands upon us during this time. It is by Your strength that we can continue through each day. You are the Rock we lean upon. You are the Fortress we run to for protection. You are our Shield when we're buffeted by negative reports all around us. You Are Our Healer!