We had the team meeting this morning with Chad on conference call. Overall, positive, the main concern is Carsten's poor oral motor skills with drinking and textures. They are going to push pureed volume as far as possible and make tube cuts as appropriate but the bottom line is he HAS to learn to DRINK to get as far as we'd like. So, this will be the priority in OT and speech while the psychologist feeding him his meals will continue to push volume. They just can't predict what his percentage of independence from the tube will be once we leave. They mentioned 50-75% this morning but it's really up to Carsten. We will be here the full 8 weeks and projected D/C date is Nov 14th?, somewhere around there. I'm slowly becoming hospital delirious and forgetting days and times as usual. I did get to go to Wal-Mart last night for a parent outing, let me tell you it was maybe the most exciting trip to Wal-Mart I've ever had:)
Carsten is making lots of friends and really starting to pick up on some sign language. He is signing "more" "all done" "brush teeth" very consistently now, for some reason "brush teeth" is his favorite thing to do, GO FIGURE!!
He's a trooper and we're proud of him and the sky is the limits for this little boy. Please continue to pray for textures, drinking, tolerance of pureed volume, remaining well, my relationship with the women here. Thanks!
Blessings,
Kari
1 comment:
Hi,
I was just pointed toward your blog by Christina (Prince Vince). Today I had blogged about Braska's current feeding status and how lonely it can be in the severe feeding issues world... as you know. :o)
I've looked into KKI before and wondered how it went, so I'll be following your story and watching Carsten succeed!!
Many blessings! RK
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