What's For Dinner?

First of all I want to say "thank you" to my brother for posting our prayer request yesterday when I couldn't. Thank you also for sharing your moment with Jayson with us.

Yesterday, after the meeting with Jayson's medical team, Henry & I remained in the staff room to talk to about what was discussed and to make sure that we both understood and agreed to what we had decided. After Henry left to be with Jayson, I stayed behind in the room alone, just looking out the window. I noticed what a beautiful, clear and sunny day it was.  There was a slight breeze allowing the leaves on the tree outside the window to wave. Then it struck me that we may have to wave good-bye to Jayson soon.  Tears swelled up in my eyes and the emotions just overwhelmed me. How could I say "good-bye" to my baby boy? How can anyone say "good-bye" to their child? There was no answer.

Our social worker, Heather, walked in and she sat and talked with me. She has been working with us from the very beginning when Jayson was first diagnosed with Rhabdomyosarcoma. She has been very supportive of our family over the past 2 years, almost. It felt good to just talk to someone who's familiar with the emotions that families in our situation go through. She had given me another perspective and I left the room more composed.

Dinner Menu: Cocoa Puffs, Milk, Orange Juice

During the late evening, Henry, Mommy Del & I sat near Jayson's bedside. Jayson was asleep most of the time.  When he woke up, he was trying to say something but we couldn't quite understand.  He then gestured with his hand forming a half of a sphere. Then I heard "cereal".  I quickly asked him if he wanted cereal in a bowl and he nodded yes. I asked him what cereal he wanted; he said "cocoa puffs" and "milk". So, we quickly asked the nurse if he can have some cereal with milk. She left the room to ask his doctor if it's okay. I'm sure there were concerns of possible complications from eating such as choking & vomiting, but I had made up my mind that we weren't going to deny Jayson this request. He was going to get his cocoa puffs and milk for dinner.

A few minutes later, one of his nurses brought in a box of Reese's Puff cereal.  It wasn't the Cocoa Puffs Jayson wanted, but we would make do with it.  Henry just took the chocolate flavored cereal balls and placed it in a bowl.  Then he smashed the cereal in smaller pieces, put it in a cup and added some milk. We let the cereal soak in milk for a bit and then I began feeding Jayson.  His first taste was not even 1/2 a teaspoon. I just put the chocolate flavored milk with bits of the cereal in his mouth and he just savored it.  I could only imagine how satisfying this first taste of food was after almost 3 weeks of not physically eating. I asked him if it was hurting when he swallowed and he shook his head. I gave him a few more 1/2 teaspoons and he was done. Soon after that, he asked for orange juice.  One of his nurses got him a small carton and she diluted it with some water.  He sipped the juice through a straw and I could tell from his face how satisfying that first sip was. After a few more sips, he was done.

About an hour later, he started to say something again, but we couldn't make out what he was trying to say. So, I asked him if he could write what he wanted and he nodded.  I grabbed a small white board that was given to us and I placed a marker on his right hand.  I told him to draw or write what he wanted as I held on to the small board.  He was drawing a semi-circle and next to it were some lines.  My mother-in-law and I just started guessing.  Is your lung hurting? Do you have to poop? Each time he shook his head. It was like playing the Pictionary game. Finally, he began forming letters. Here's what he wrote:

We gave him a few sips of orange juice again and he was satisfied.

Jayson slept soundly through most of the night. He had his BiPap mask on throughout the night. His urine output was very good and his breathing seemed to have improved.  Henry & his mom watched him overnight while I slept with Keilani in the room next door.  My dad took over for about an hour around 5:00 in the morning. Jayson was given a chest x-ray about 7:30 and when I compared today's x-ray with yesterday's, I could see there was an improvement. Today's x-ray looked better, but there was still a large area that was hazy white in both lungs.

Right now, Jayson's sleeping comfortably. He did wake up a few times this morning to drink apple juice, but would quickly go back to sleep. His breathing is less laborious and his fever has gone down to 99.7 as of 8:00 this morning. I'm praying that he will continue to improve today. Please join me in that prayer. God bless you all.