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Julia has been sleeping most of the time; a combination of the pain meds and needing to conserve her energy for breathing. The doctors are changing her pain medication to a Fentanyl patch that will give her more constant relief and we hope that it will give us a bit more awake time. Sunday, Julia developed a cough and the doctors have now added three new medications (a steroid and nebulizer treatment to reduce inflammation and swelling, along with a cough suppressant).

It is a struggle for Julia to talk, balancing breathing and speaking. Most times, she speaks in a whisper and we get only word at a time. “Yes”. “No”. “Kiss”. “Cuddle”.

Today, Julia spoke a bit more, piecing together a few sentences. You need to listen carefully though or you will miss what she is trying to say. She asked if we remembered going on her Make a Wish trip on the Disney cruise. She said she was trying to think about a Minnie Mouse cooking game she played, telling Aunt Donna it was a distraction.

I got the laptop, attempting to find the game on line. I kept showing Julia the options, and with drowsy eyes, she would say no. Finally, she sat up and said “let me see”. She started to look at the most recent game I found, trying to see if it was the same one she played before. It wasn’t, but John sat beside her and they decided to spend some time playing the Lego Friends game. It lasted for about 20 minutes, a fleeting moment, a treasured moment.

Tonight, we managed to get all her medications in order, hoping to avoid another coughing spell in the middle of the night; Dex (the steroid), Oxy (as we step down the pain meds with the Fentinol patch), Colace and Senna (to offset the side effects of the narcotics), Tessalon Perles (for the cough), and Ativan (to calm Julia and help her breathing).

As Julia started to fall off to sleep, she turned to me and said “cuddle”. I brought her into my arms as I lay down beside her.

“You’re the best mom ever”

“That’s because I have the best daughter ever Julia.”

We snuggled a little closer. “You know I love you Julia?”

“Yes, I know.”

“You know that everyone loves you. So many people love you.”

“Yes mom, I know they do.”

“Good, now sweet dreams. Dream of puppies…, of the big, big boat…, of the ocean.”

“Okay, mommy. You dream of me and you.”

“I will Julia”

“And don’t let the bedbugs bite”.

Another treasured moment.

2:30 AM the cough started, so we try a nebulizer treatment. I held the mask on Julia’s face, as John goes to get the Morphine drops (a great cough suppressant), if needed. I look over and there on the bed is the Fentanyl patch. It came off as Julia slept. As the coughing subsided, Julia complained that her back hurt. That could explain the early cough tonight, she was in pain. We grab another patch and this time, we secure it with a Band-Aid. Hopefully, this will keep it in place. Another Oxy and Julia begins to relax, sleeping again.

And I lay beside her; listening, writing, praying for just one more moment.

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