Foto Fabulous Friday

 

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Settling in to Normal.... ish

Jacob's Journal has been quiet in the wake of the tube wean... which then rolled into holiday madness... including hectic but well worth it travel and visiting with family and loved ones. In hindsight, the idea of continuing the eating quest on our own while traveling multiple locations and in the midst of the upheaval of routine that is unavoidable during the holidays was questionable, but we never seem to shy away from insanity so why would we this time? We all survived but Jacob's Journal was clearly neglected.

Life is finally getting back to normal, holiday decorations put away and all.... and daily routine back in action.

On the eating front. Jacob is doing amazingly well.

The transition home was rough. Big ups and downs and downs and ups. When we returned home he was squarely back in the house that he didn't eat in, in the chair where he always got his tube feeds (we had to move the chair he normally sat in to a different spot at the table - and also did most meals on the floor initially) and it took time and patience and many phone calls with our therapists to get us all through that first couple weeks.

French fry examination at a rest stop. Holiday travel food therapy.

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Somewhere in the process he made an odd 180 degree turn and has decided he likes eating better than drinking... currently pushing away the sippy cup.... which is troublesome. BUT he is eating - Eating! - really really really really well. And it's a hell of a lot easier to load puréed food up with calories and a variety of liquids. So we are cheering on the amazing eating progress and being patient with the drinking strike.

Notable notables:

• This past Monday Jacob had his first weight check (we do weight checks ~weekly) since we started the wean that did not show weight loss. Jump for joy happy and relieved! Some of our background/baseline stress was watching him lose weight through this process. We knew it would happen, we understood to be prepared. We knew he was doing well, making great progress. But all the rationalization in the world doesn't help when you continuously see numbers drop, drop, drop (13% weight loss total). So this week the dropping stopped, at least for now. Whew!
• It has been over 30 days since we have used the tube for food (although we were still occasionally supplementing liquids while he slept).
• It has been 7 days since we have supplemented liquids. (That's 7 days that we haven't used the tube at all!)
• He routinely eats 18 - 25 oz. of puréed food per day. Mostly veggies (although Jacob's Mom sneaks in yogurt and milk for dairy - and some beans and tofu for added protein).
• He has sufficient wet diapers every day and... wait for it... drumroll..... Pooped every single day for the last 6 days. Woot!

• Last but certainly not least. Jacob ate a banana(!). Yes we squished it up... but still... a whole banana! Here is what happened. Jacob was playing with his toys. He looked up at Daddy and signed 'eat'. The closest/easiest thing at hand was a banana. So Dad thought he would give it a shot. He mushed up half the banana and Jacob gobbled it up, so he mushed up the rest and Jacob gobbled that up too - then went back to playing.

How mundanely normal is *that* story!?!? Amazing. Who knew mundanely normal could feel so good!

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