June 3, 2013

UPDATE (6/3/13)

Another good day! Spoke with cardiology this morning, and we are still looking good. It looks likes they want to do another echo this week, and then the cardiac cath sometime within the next few weeks (same story). They want to wean his Vapo flow to 2.5 tomorrow, then to 2 on Thursday and maybe do an MRV on Friday (if everything goes according to plan). We haven’t touched the methadone in well over a week….turns out the focus right now is on the VapoTherm and trying to get him off it. Being that it is currently looking like we may be just staying for the second surgery (and not going home at all), there just isn’t a huge rush to get him off the methadone. Vapo is priority.

Leah came back today. It is great to have her back. Before she got here, however, music therapy showed up and played guitar and sang for him. Beckett loved it!!! He wasn’t sure at first, but after a while he was kickingl his arms and legs and cooing right along. I actually got some video of it, but it was before he got really excited, it was while he was still kinda figuring it out. Unfortunately my phone ran out of space. The music therapist LOVED Beckett’s reaction, she said that she’d like to come 2-3 times a week if we were ok with it, and would also like to know if we were willing to fill out a release form to record his response (being that it was so dynamic). Of course we loved that idea and are eager to have her back.

He gained a little more weight again (that’s almost always good news). They are, however, going to slow down his calorie intake because of how quickly he’s gaining weight. They would like his length to catch up to his weight before they push his calories again. He’s starting to get a gnarly double-chin like his dad. πŸ˜‰

That’s about it. Thanks y’all. Have a great night. I hope this updates continue to get more-n-more boring. God is still good (#rhetorical), and we are so thankful for how far we’ve come!


β€” with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

3 thoughts on “June 3, 2013

  1. child of God says:

    Continuing to rejoice with you in these boring updates! πŸ™‚


  2. Sharon Grandstaff says:

    Love the boring updates and pray they continue to get more boring. God bless you, Leah and little Beckett.

  3. Loving these “boring” updates as you call them and hearing what a charmer he is. πŸ™‚ Way to go Beckett! Continuing to pray while believing and trusting…

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