This is my alarm clock every morning. Usually around 6am.. sometimes earlier... rarely later.
"Hi Mommy, I'm awake!"
"Okay, go get dressed please..."
an undetermined time later...
"Mommy, I'm dressed"
"Okay, do you have your socks on? Did you put your pajamas in the clothes hamper?"
an undetermined time later...
"Mommy, I have my socks on!"
"Okay, then you can go downstairs now..."
He then goes downstairs and turns on the TV until I'm up and come downstairs to feed him.
It's Tuesday, which means Liam puts his shoes on to go to day care...
and Collin gets ready to go to clinic for chemo..
I put the lidocaine over his port area and cover it with press and seal until he gets accessed.
The bags are packed and loaded in the car - Liam with swimsuit, towel, and blanket for nap: Collin with his feeding pump, meds, food, blanket, monkey, change of clothes, diapers, and other assorted items.
Liam still has trouble opening the door, but he climbs in...
and buckles himself in...
while I get Collin in his car seat.
This morning we happened to catch the train at the light.
When we get to Liam's day care, we go inside...
sign in and drop off Liams' stuff in his cubby...
and go outside. Sometimes he can't wait to tell stories to the teachers or show them what shirt he's wearing today, other times he's shy for a few minutes and clings to me.
He gets over it quickly though and cheerfully waves goodbye to me at the gate.
I drive with Collin down to New Haven to the Smilow Cancer Hospital. We park on the 4th floor which goes into the 3rd floor of the hospital. We take an elevator to the fourth floor, walk across a crossbridge and down a long hallway to another elevator to take us to the 7th floor...
to the pedi hem/onc clinic.
Collin claps my hand while we wait to be called in... normally I practice standing with him but he's being fed at the moment.
He gets measured...
31.5 inches... he's had a bit of a growth spurt the last couple months.
11.61kg = 25 and a half pounds.
Then blood pressure and temperature. He also has a urine bag put on.. it needs to be tested each time he gets avastin to make sure his kidneys are still working properly.
We go into an exam room and wait for Dr J... we talk about how he's been since the last visit.. how often he throws up, how his behavior is, if there's anything unusual, how he's developing, etc.
Then Nurse Karen comes in and accesses his port. Normally she'd draw blood for labwork to make sure his counts are okay, but today she was unable to draw back any blood.
She put in altiplace to break up any clots that might be in there. We go back into the infusion area where I watch TV and catch up on Rachel Ray and The View.. over an hour later she's still not able to draw back any blood.
So Dr J sent us down to the second floor for an x-ray to make sure it was still in place.
The monkey kept him company of course...
And afterwards I grab a quick lunch at the hospital cafeteria and bring it back up to the clinic.
Collin hangs out with Bananas the Monkey in his stroller while I eat my lunch. Becky, the nurse practitioner, had to go down and look at the x-ray herself since the radiologist had not read it yet... and of course it showed that the line was not in the right place. It wasn't completely out of the vein, but it wasn't where it should have been, so no chemo today. They made an appointment with Dr D the surgeon for next week.. a pre-op visit to discuss removing his port and putting in a new one. We'll definitely be discussing putting in a g-tube also so that we don't have to bother with the ng tube anymore.
Thankfully the parking is free, thanks to the Tommy Fund. Some days can be up to 9.00 to park if we had to pay!
I drop off Collin at home to sleep (Chris is home sleeping too) and go to Kohl's to get new pillows. I threw out my neck this weekend and it got worse today, so I'm hoping new pillows will help.
Then I filled the Highlander up with gas...
and picked up Liam from day care.
He remembers not to step on the blacktop until I walk with him to get into the car, then we go home.
After dinner, Chris goes to the firehouse for Tuesday meetings or training... leaving me to put Liam to bed. Thankfully he gets his own pajamas on himself and lets me know when he's ready for me to read a story.
Tonight we read "When I Grow Up" by Mercer Mayer...
and then I sang Twinkle Twinkle Little Star.. after a hug and a few kisses, I leave the room for him to go to sleep.
Of course, since my shoulder/neck is still really hurting, I relax on the couch with my laptop.