All the information is in, biopsy results are back and the verdict is here.
There is no known medical reason for Luke’s crummy eating. Awesome. That was a mighty expensive “we don’t know what it is” test. But because the kids pulled out “fast from saying anything negative” from the PFA Basket this morning, I am reminding myself to be thankful.
I’m thankful his gut, and all associated with it, is normal, healthy and totally functioning. That is BIG news for a kid who had NEC.
I’m thankful the answer is more therapy. One, because we love his therapist and two, his eating woes are 100% treatable. It’s just going to take a boatload of time.
I’m thankful we don’t have to darken the doors of Dell for several months. I hate that place. Oops, that was negative wasn’t it? Um, I don’t care for how it feels to “be” at Dell. There, is that better?
I’m thankful we don’t have a soccer or baseball practice, a math class, a late night meeting or anything else on the calendar tonight. Momma needed a night at home with no crazy after-school “stuff.”
The above photo is our skinny, but completely happy, Luke. He’s still at 20 lbs. as a 2-1/2 year-old. I guess tackle football is out. We have some big doctor visits coming down the pike: cardiology, developmental pediatrician/neurologist and ENT. After a phone consult with his gastroenterologist, we’ve decided to keep plugging along with the OT. And, should he have a bad week of throwing up and diapers, we’ll do a 5-day stint of flagyl. It’s basically an antiobiotic that “resets” the bowel and clears out any nasty bacteria hanging out. I’m busy doing research to find out what more we can do, but that’s the plan for now.
I pray your Lent is going well. So far, about 36 hours in, we’re keeping up our promises. Just 38-1/2 days to go…
Here at Team Whitaker, I just blog about life as it happens. Sometimes I'm extraordinarily funny (according to my children), sometimes not. I just try to be real. Real Kathryn. Unedited. Motherhood and our faith lives are a journey, why not join me?
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Seeing that picture of Luke immediately reminded me of my 23 pound 2 1/2 year old of whom my mom was counting ribs last night. And he eats, not great but he does.
Our preemies may be small but all the better for snuggling!
Selfishly I like that Luke is a little smaller. He is the king of snuggling and I love it.
Kathryn,
We are so glad there is nothing physical wrong, although we know in some ways it would be far, far easier to have a straigthforward fix. I’m sure you’re getting a ton of advice, but just wanted to share that with our son’s eating problems so much of it had to do with emotions too (NOT yours). Any time he was really happy, in particular, you could count on a truly nasty projectile fiesta. Why happy=upchuck, I couldn’t tell ya. What we combined in terms of fluids with solids also impacted him greatly, as some seemed to set off the gag reflex. We learned, over time, what combos were the kiss of death. The OT is so tedious, but it will make all the difference. Promise. All of this is just to say you are not alone and BIG hugs to you as a fellow mom and your whole family. You have a virtual cheering section in all of us.
Hi Kathryn! I’ve been reading for a few months now – I’m Baptist, from Alabama, a former NICU momma, and current mother of a sweet 14 month old boy with a complex of birth defects such as imperforate anus, a spinal defect, and some musculo-skeletal issues. We, too, battle eating/weight-gain issues, though not as severe as your little Luke. Just know that we’re praying for y’all! I’ve also really enjoyed your posts about Lent — the Catholic religion is intriguing to me, and I love the way you get your kids involved! I decided to give up radio for Lent to give my mind some quiet time to pray and reflect. I’ve also adopted your 40 notes of thankfulness, since we’ve got a ton of people we can thank from our first year as parents of a special medical needs child.
Btw, is Luke on a daily probiotic? That may help with some of his tummy troubles. Our little one has a colostomy and takes a prophylactic antibiotic, so his output is always on the nasty side – but we started putting culterelle kids in his first bottle and it has helped tremendously with his output, and we’ve had fewer UTIs since then, also. Just a suggestion!
Welcome to the blog! That’s great you gave up radio for Lent. I have no doubt it has been a great sacrifice, but a fruitful one.
Luke is on a daily probiotic. We started that over a year ago and it has been a tremendous help. If we happen to skip a day, we know it. I should be an advertiser for that stuff!