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My Checklist for the Week

Let me tell you, some weeks are crazy and some are just plain insane. Last week was just plain insane.

On Monday:
Met with our Occupational Therapist to brainstorm once again how to feed Corban, since he a) aspirates on thin liquids and b) won't eat thick ones. Check

Deal with severe bouts of constipation, including crying, screaming, turning red in the face, etc., and agonize over how, what and when to feed this child. Check 

On Tuesday:
Take all 3 kids to Corban's ophthalmologist appointment to find out our 14 month old needs GLASSES. Check

Perform "surgery" on my baby to get him to poop, and get stool samples for the pediatrician, to test for blood. Check

Notice after 5 o'clock that I missed a long awaited phone call from our geneticist. Check

On Wednesday:
Call geneticist first thing in the morning and learn that Corban does not have the typical gene mutation for Freeman-Sheldon Syndrome and that they will keep on testing his genes for other variants. Check

Pack a lunch (and all 3 kids) to see Corban's upper extremities orthopedic doctor. Get halfway there, realize I forgot his milk at home, turn around and arrive at appointment 20 minutes late. Check

Check in, feed the kids, then see if we can break for Corban's 2 o'clock appointment with Orthopedic Services just down the road. Wait for doctor to adjust helmet so it doesn't create a ridge in the top of Corban's head anymore, along with a bright red spot on the side of his head. Check

Rush back to see his orthopedic doctor, only to sit there and wait for another couple hours. Finally see him, receive no new news, then load up the crew to head home after being out for 6 1/2 hours. With all 3 kids. Check

Collect more stool samples for pediatrician. Check

Remember to call the medical supply company so we don't completely run out of g-tube bags and find ourselves up a creek without a paddle. Check 

On Thursday:
Wake up to the sound of a knock at the door, quickly throw on some presentable clothes and greet the medical supply company delivery guy, with a smile (haha, not really). Check

Go to pediatrician appointment and discover that 3 out of 4 stool samples tested positive for blood. Check

And that he has a double ear infection. Check

Head to pick up his antibiotic and on the way, get a phone call from the GI doctor's office with an appointment time and another prescription medication for Corban to take. Check

Get Corban home for a SHORT nap, then head back out again and break all speed limits to make it to the lab before it closes at 5:00. Barely Check

Get a large vial of his blood drawn from his tiny little veins for the GI (gastrointestinal) doctor next week. Check

On Friday:
Brainstorm about what could be causing the bleeding, about double ear infections, about alternating medicines, how to get him to eat, and swallow studies, and bottles, and helmets, and hand splints, and constipation, and therapies, and endless doctor visits, and sleepless nights, and smiles, and baby laughter, and funny faces, and how all the troubles of this crazy life we have, seem to fade in light of the joys we receive. Check