....not because things are bad, but because they're insanely BUSY! Where do I even begin?
Caleb is doing awesome.... he's 20 months now, is crawling ALL over the place, pulling up on everything, crusing the couches and anything he can hold onto, will walk with assistance and basically is a holy terror (which is a good thing!) He's now only taking 10 hours of TPN (584mL) and is running at a rate of 63mL/hour for 17 hours of Elecare through his G-tube (which is double after reading my last update!) He's babbling and starting to use some sign language also. HE IS ALLLLL BOY!!!
He ended up hospitalized again for 9 days in April for another line infection.... after 4 months infection free, it was very disappointing. He's also been getting frequent double ear infections, which we can't decide is because his gut doesn't absorb the antibiotics correctly to properly clear it up or if he's just really prone to it.... who knows if we'll ever know, but we're going to an ENT in August and will most likely end up with tubes. Thankfully I've learned his symptoms now and we don't rush to the hospital because of his slight fever (assuming all the other things are in check!)
It's finally the summer (the best part of teaching) and we're going full-force with therapies and appointments. He's also going to be starting the Little Bites Feeding Program (FINALLY!) in addition to his speech therapy & OT that works on feeding. NOTHING is working.... he is finally starting to tolerate some ice water from a sippy cup, but it's inconsistant and still such a small amount. He's still a joyful little boy & such a free spirit, but it's definitely getting harder the busier he gets to get him hooked up, etc. The backpack is working brilliantly, but it's causing some issues with his back. It's such a Catch 22 with our kids!
Well, I guess that's all for now... I'll try to post more and actually figure out how to network with some people on here! Until next time....
*I wanted to post new pics of him, but the website is being cranky!
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Hi Jennifer,
ReplyDeleteMay I begin by saying that your son is ridiculously cute!
I ran across your blog a little while ago and added it to my reader feed. My daughter Blaise is about 2 months younger than Caleb and was born with a cyst/volvulus that killed most of her small intestine in utero (think pre-natal NEC). She's doing great and, if you'd like, you can read all about our adventures at http://littleblaise.blogspot.com.
But, beyond just saying hello, I wanted to let you know about two possible networking resources. First, there is a yahoo group for short bowel patients and parents. You can find it by searching yahoo groups for Short-Bowel_Syndrome. I created a yahoo account to do this. I'm not sure you have to, but I couldn't figure out another way. :)
Also, if you have a facebook account, there is a facebook page spin-off from the yahoo group (although there are people on it who are not on the yahoo group). It's called "Short Bowel Syndrome Support".
There are lots of folks in both these groups who would love to know about you and Caleb and offer advice and support. I hope you find them helpful.
best,
Erin
Mom to Blaise
econwell at gmail