Wednesday, February 12, 2014

Update and Piper quotes.

Watts is wild and happy and as stubborn as can be. His counts recovered on Monday so we discontinued his neupogen shots and are scheduled to go to Brenner for a lumbar puncture tomorrow morning. We aren't sure how the weather will impact his appointment, but if we go as scheduled, he'll be sedated around 9am. He will also start five days of the awful steroids. This will be the start of the second round of the 8 week cycle we just finished.

Lately, some of the doctors have been expressing some concerns about Watts' weight. Although he has gained a little bit each week, they want to see him closer to the percentage that he started in when he first got sick. He started in the 75% and is now hovering around the 40%. Their concern is that if Watts gets another serious infection, he will most likely lose more weight and this could hinder how well he can fight off the infection.

This is stressful, to say the least, but we are trying to make mealtimes with Watts still enjoyable and pressure-free. Our secret weapons so far has been letting Piper "feed" Watts (even though he normally feeds himself, he finds Piper helping him to be hilarious) and also letting him use toothpicks to pick up his food. We also have a wide variety of yogurts, crackers, dips, and high fat-content ice cream to try and coax in a few more calories. I am going to talk to the doctors more about this tomorrow and also share some new information: after looking back on Piper's old medical records, I realized that Watts weighs the exact same as she did at the same age. . . so most likely it is not realistic to think that Watts is ever going to be in the 75th percentile again. We'll see what they say. The big picture is that Watts' looks really good, is mobile, active, and exploring with new foods. This is something to celebrate! Even as we try to get some more meat on his bones:)

Side note: I am pretty resistant to increasing his night feeds through his NG tube because I feel strongly that this will only decrease how much he eats by mouth. It is, however, always an option. 


Some Piper quotes (all from today) for my brother, Caleb:

"I am a fairy princess that makes people well... Let me look in your throat. Yep, you look good."

"Look at my best friend, Watts, do an amazing jump off the pillow!"

"Actually, that line on the throat is a gate to keep it's bones from going into it's head." 
[Pointing to her drawing of a duck.]

"I want to have Claire and Norah and Canaan over and we can race upstairs and have the Olympics and then we can race downstairs and see who can say "¡Hola!" the fastest. It'll be so exciting!"


  1. This is the best! Y'all are so fun! I am SO glad I got to meet y'all! I had a BLAST! Watts and Piper are cuties! Praying for y'all! Piper can discover a new sport in Olympics! :)
    ~Love, Laura

    1. Loved meeting you too, Laura! Thanks for coming to the concert!


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