Sorry to be silent for a few days - I'm cooking breakfast in the kitchen, and typing on the laptop, while Tessa-Lynn is eating her breakfast, and Alex is watching Tom and Jerry cartoons in the other room. My sister Elizabeth is asleep in the other room, and the cat is on the counter - shoo!
Alright - catch up time...
Friday:
I didn't actually get to the "road trip" with Alex to distract him from eating. The sun came out, so we went outside. Tessa-Lynn *was* hungry, and so, I had her inside, and fed her while keeping Alex distracted outside. Then, we went on a red wagon ride around the neighborhood. When we got back, there was a present from one of Alex's school-mates from last year on the front steps - that was a great distraction, as Alex became obsessed with *needing* chicken nuggets to eat. Just as we were reaching critical mass about not eating, my mom drove up to take care of Tessa, and Alex and I were able to get in the car and head to our clinic appointment.
Once we were at the hospital, I loaded Alex in the red wagon, and away we went. Alex enjoyed riding in it, and I'm sure it will get a lot of miles over the next two years...
Alex was a real trooper while the nurse put the Zofran (anti-nausea) in his PICC line, and let them draw blood. Then we went to the play area for a bit, while they got the procedure room ready for his Lumbar Puncture to give him the Methotrexate directly into his spinal fluid. The doctors said that the mass in his chest has reduced so much that they were comfortable giving him regular sedation, instead of the twilight medications (Ketamine). He took a while to go under (that strong will of his!), but once he did, the procedure lasted only 10 minutes, and then I could come back into the room with him. He received glow in the dark stickers, and while he was waking up, the nurses gave him the Vincristine and Daunorubicin.
We then tried peanut butter on a graham cracker to mask the taste of the Prednisone. He ate it! I thought - awesome - we finally got the trick!
After we got back to his room, the nurse gave him some Oreo cookies (he hadn't eaten anything since 10am), which he proceeded to crumble and throw to the floor (frustration, and steroids - gotta love it!) So, we left, and headed for home.
I forgot to have him go to the bathroom before we left, and since we were heading off the hill at 5pm on a Friday night - traffic was awful! We hadn't even reached the freeway, after crawling down the hill, when Alex said "Mommy...I have to go pee!" Ugh...I looked around frantically, and found a bowl that I had brought some jello in. I pulled into the YMCA parking lot, dumped the jello, and Alex used the bowl. Lesson learned: Have a container ready - these medications are messing with his bladder function!
When we finally made it home at 6:15 (the hospital is only 10 miles away...), there was a casserole ready that our neighbor cooked for us, along with a salad and cookies - we were so grateful.
Next - Saturday (I promise to get you all caught up!)
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Good to hear peanut butter is working. I would save the last 1/2 cup in the jar & mix it with jam,jelly,or granola. This w/ a plastic spoon was spread on crackers & cookies.animal crackers worked great)My son was a "big cook" to do this for us as a treat.
ReplyDeleteI also used to have a cupboard that was just for his use. TV tray w/ short legs & plactic spoons & paper plates were left there.Tupperware was the dish of choice because of the lids. Small containers of cereal,crackers,cookies etc were available for him to serve. I kept small glasses w/lids of milk & juice in the lower door of the fridge. He would enjoy serving himself & Grandma.
Love, hugs,& kisses to all,
"GA" Bonnie