Tired Tuesday

Thankfully, the sleep plan worked again and Julia slept until 10am. She was more persistent today about asking for snacks on the way to the hospital. I kept telling her we needed to talk to Dr. Sam first. She eventually said okay, and actually apologized for asking- I had to shed a quick tear on that one- poor JuJu.

When we arrived at the hospital she said, "I'm not going in today cause I'm not 'talking' anymore. I'll stay in the car and finish watching this... But you can go in if you want?" If only it were so simple. She did go without too much of a fight and was actually very chatty and playful. I brought a smaller load of stuff with us today because it was only a radiation appointment. Bad move. The sedation team was held up an hour in another dept. I had to get creative, especially because she wanted to eat.
Fortunately I did have the Little Einsteins playset and the Dora coloring set. All these hours of watching L.E.s must be paying off because she wowed me with her knowledge today. She recognizes all the scenes and talks about the Leaning Tower of Pisa and the 'Stynx' in Egypt like she's actually been there.
Its amazing to me how quickly (as a mom of a chronically ill kid) you have to create this alternate universe for your child. We are at the hospital every day in a variety of situations, but you find a way to make it 'feel' normal. The sad part is that after just a short time it does feel normal. At least she can be happy in the environment and not feel afraid. A lot of that has to do with the incredible hospital though who does everything in their power to make it enjoyable. Every person in radiology- nurses, secretaries, techs, support staff- greet her with huge smiles and hellos and gifts of some sort. This crowd has been ordering kids meals for lunch all week, so they have a surprise for her when they see her. Its the little things.

Dr. McMullen's resident came out to talk to me about her belly pain. They are slightly concerned that something may be going on, but not too much because she is still bright, happy, eating, voiding, etc. We pray this is true. She will see the oncologist on Thursday and Dr. McMullen has put her on his schedule on Thursday for an exam when he's back from vacation. Please pray he is having a great time wherever he is. I feel a special burden in my heart for the oncology doctors and nurses and I hope he's having a great time with family.

We got started around 12:45 and had no problems. He gave her zofran first to counteract any more vomiting. He suspects it was from the sedation. He only gave her a half dose of sedation today and it worked great. We actually had to really work to wake her up. Dr. Sam calls her his little sleeper- we knew that already :) He also told her he's going to bring her her favorite cookies for after Friday's treatment. Such a tender-hearted, talented man. She woke up much more responsive than yesterday and was talking by the time we got to the car. She told me, "Great job turning the car Mommy." As we left the parking deck- too funny.

She was quite enthusiastic by the time we arrived back home and was very resistant to nap. She finally went down around 3:30. This schedule is working for therapy, but is tough on all of us. The days are long with Carter up at 7am and Julia up until 11pm. I will be thankful when radiation is complete and we can go back to 'just chemo'. It sounds so weird to say that. It has been tough having constant shifts during the days without breaks because of the kid's weird schedules. They both need me and deserve the attention and time right now. Please just pray for energy and endurance for the rest of this treatment schedule. Carter is very excited that Mimi comes tomorrow. (Hopefully she's been eating her Wheaties :)