Monday, May 9, 2016

Week 142: Step up

Thank you so much to everyone who has already donated to our Great Strides team.  The walk is this coming Sunday, so you still have one more week to donate and help us to reach our team goal by clicking here!  Your donation will help to support the outstanding research that is will find therapies for Lemon and all his fellow travelers with CF, to help them lead long and healthy lives.  So much progress has been made over the last few years, and it's really important to keep up the momentum for a few years more in order to push some of these promising candidate drugs from the laboratory out into clinical trials.  My hope as always been that there will be a medication that treats the root cause of CF for Lemon to start taking before he's 10 years old.  He's almost 3 now, so the clock is ticking! 

This week marks the first week in I don't even know how long that I did not set foot in Children's hospital.  With Lemon having so many body parts under clinical supervision at once, we seem to be there once a week if not more.  I guess I should feel lucky to have even had a week off, since this coming week I have a maximally inconvenient day on Wednesday, with an appointment at 9:30 a.m. to have his first ever G-tube change (how has it been 2 months since his surgery already?!?), and then at 12:50 a second appointment to take off his cast and do more x-rays.  I'm hoping to sneak in a weight check while the cast is off, so that we can get an accurate sense of where we are. 

Lemon's eating has been really hot-and-cold the last few weeks.  Some days he eats quite a bit (by his standards) and some days almost nothing at all.  I do find it reassuring that we have the tube feed to back us up at night, so I know he's not losing ground, but I still wish he would eat more.  I know he'll have a feeding tube for a long time, but I still wish I could at least envision a way that we could get by without it someday.  Right now, given how little he takes in orally, it's completely impossible to imagine.  It was recommended to us that he do some occupational therapy to try and help him overcome his issues with actually putting food in his mouth.  I definitely want to give it a try, but I decided for sake of my sanity and continued employment that we put it off until the great episode of the arm is behind us.  For one thing, it would be great if he had use of his dominant hand while working on his eating, and for another I simply cannot do medical appointments with any greater frequency than I am now. 

Lime has been really working on his crawling, and he can now travel 10 yards or so at a pretty good clip.  He is definitely getting ready to leave babyhood behind, which is both happy and sad.  I am ready for him to be a little less dependent on me, and yet he is at such a sweet age right now that I want him to linger for just a little while.  He has his first word (Mama!), which he deploys frequently and to great effect.  After a somewhat slow start, he's really taken to solid food and will try just about anything you put in front of him, and will shovel in his favorite foods with great enthusiasm.  I am hoping this portends the advent of sleeping through the night. He is also finally big enough that I have been able to realize my long-time goal of having both kids sit in the seats of one of the big shopping carts at Costco. 

Next week, Lime and I will go on a great adventure together--I have a work trip to Nashville, and due to the aforementioned dependency, Lime is coming with me.  Papa Bear and Lemon will have some father son bonding time back at home in Madison.  Hopefully not too much of that time will be at 4 a.m.!







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