It's been 10 weeks of hospital living and Owen says it feels like 10 months. He has been working so hard on being patient. His dressing change yesterday was amazing!! He had his Psychologist and Child Life working on his relaxation and distraction techniques. He was super polite to the vascular team and didn't use any unfavorable language. He came up with a list of "appropriate" words to use for when he was in pain or just needed to yell out a word... Shazam.. Holy Bat Crap .. Pikachu. He used them a few times. :) I'm so proud of him.
He has been loving his nurses lately instead of getting annoyed with everything they do. It helps that they all love Pokémon Go and he has very lengthy conversations about it. He is up and out of bed at least a couple hours a day roaming the hospital or outdoor atrium. He has visited 102 Pokestops and has over 100 Pokémon in just one week. Last night he had me walk 2km just so he could hatch his 5km egg and it was a really high power Tauros. The excitement is contagious. I'm sure people think I'm a weirdo walking around the hospital looking at my phone all the time collecting Pokeballs.. if they only knew they were for my boy. He loves it when I come back in the room and tell him I found a new Pokémon that he didn't have.
We started him on Periactin (appetite stimulant) 3 times a day and while he still doesn't have an appetite, it is taking away the nausea a little. I have him up to 450cc of gtube feeds a day which is about 15oz of food a day. The rest of his nutrition comes from TPN/Lipids. We are slowly going down on those since his weight gain is so significant. He is up from 46lbs to almost 58lbs in 10 weeks and has grown almost 2". I am just amazed at the difference in him! The goal is to chip off the IV nutrition and hopefully he will continue to tolerate the increase in gtube feeds.
Labs today looked pretty great. He is holding steady. No new changes as we found a sweet spot and we are sticking to it. We couldn't ask for a better place to be in right now while we wait.
Back home..
Kam started her Junior Year of High School yesterday! She had a fantastic day and her teachers are great. She is begging for a car so she drive herself so I'm buckling down and seriously searching everyday. Hoping something perfect will pop up this weekend. This is a big year for Kam. She has a lot of AP classes, she takes her PSAT this fall to try to qualify for National Merit Scholarships and then she will take the SAT in the spring. We will be touring Stanford this fall and then ASU Barrett Honors College as well. It's all very exciting!
Wasn't this just yesterday?
Kindergarten 2005
Life is good.
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