Wednesday, March 14, 2012


I was looking through pictures tonight.  On this day in March two years ago, I took Ty to the beach after work and we collected shells.  It must have been nice and warm like it was today.  Then one year ago today, we were getting discharged from the hospital after an emergency visit due to headaches and sleepiness.  At the time they did a number of tests on Ty in the pediatric ICU to make sure his shunt was functioning properly and to rule out seizures (including an EEVG - poor baby!).  I guess he was still in the middle of his first series of IMRT radiation treatments and we couldn't figure out what was wrong.  I remember that after weeks of his slow and steady decline, an infection in his central nervous system was discovered.  This year, instead, we had a nice quiet day at home.  And next year I hope I can post another picture of him walking on the beach, or somewhere beautiful!

Ty collecting seashells exactly two years ago

Ty in the hospital for an EEVG one year ago today

Ty just a week ago - right before our latest setback

He has grown so much, and in so many ways.  Today I realized that he is finally putting on some weight and getting taller.  I cleaned out his closet of all the pants that were getting too short on him and I enjoyed doing it!  Can you believe some of his PJs were still size 2T?  He's four and a half!  Despite how much has changed, I also feel like we remain stuck in this same never-ending nightmare that began on August 11, 2010.  With this latest setback, it's as if we are still in the middle of a guessing game and I'm not 100% convinced that this is viral (but I certainly hope it is).  Ty is very sleepy.  He was only awake a total of eight hours both yesterday and today.  He has headaches, but they aren't nearly as bad as they were.  He is super whiney and irritable.  And, he is giving me hell about eating again.  We will be returning to the hospital tomorrow for an infusion and I am looking forward to seeing if the bloodwork tells us anything.

When it comes to food, he is repeating much of the strange behavior that I have unfortunately seen many times before.  I have to take him to the cabinet to look at the food over and over and over again throughout the day.  Take him to the refrigerator.  Read off a laundry list of things I can make him.  Nothing appeals to him.  He only asks for sour patch kids - and he only eats the blue ones.  I convince him to have 1 piece of a grape instead (1/4 or a grape - that's it).  He tells me he wants noodles - I get so excited and cook him up some fresh macaroni, but he eats only four of them.  He asked for chicken at 5PM today.  I was so unprepared so I frantically defrosted some in the microwave, found a tank for the BBQ grill in the garage, got that all set up, cleaned the grill and made him some perfect chicken breasts just the way he likes it.  After all of that work, he wouldn't even put it near his mouth.  So frustrating.  It will take time, I guess.  He was doing so great, it makes me sad to see him regress like this. 

 I will be sure to let you know how things go at the hospital.  We are also meeting with a doctor to get his left wrist and ankle fitted for a brace.  It should help him with his physical improvement on his left side and allow him more confidence when trying to walk.  Fingers crossed!  In the meantime, I should get some sleep because we have a very early start tomorrow.  Goodnight everyone.  Thank you, as always, for everything. 

1 comment:

  1. Praying and believing and begging God to free your family from this. My angels ask about Ty everyday and there are some moments when we just stop what we are doing, hold hands and pray for God to heal Ty from ALL of it. My heart breaks for you all, but the strength you ALL have is truly miraculous. More miracles to come!