No, this is not Camden! Just want to give you news on Camden's progress. Monday last week he went to his GI/Nutritionist appt. Again, they whipped out the "growth charts" (which we're getting tired of looking at!). And again, his weight and length are still way below the norm, though the length had increased. The nutritionist pointed out that in more than a year of seeing him, Camden's gained only one pound. I asked her what the feeding tube involved and she started to explain it and the GI dr. finished. He even brought in a little baby doll with an actual feeding tube in its belly. (Which Camden thoroughly enjoyed pulling it out each time Mommy put it in).
It actually is not as scary as it sounds and both reassured us that not only will Camden be guaranteed to gain weight, his brain function will also increase. His normal feeding routine and the foods he likes will not change. He'd probably just get a supplement at night. We would start to see improvement right away and he will only need it until his goals are accomplished...it wouldn't stay in forever. Dr. Farnhem (Nutritionist) wants to give us 2 more months before she puts in for a referral for the feeding tube.
We told this to our PT, Lisa and she sounded very relieved. She agreed it's a smart move, one that we wouldn't regret. It's just no one wants their kid to have surgery, you know? And I'm sure that Camden will get used to having something poking out of his belly...we just don't ever want him to be more uncomfortable than he might be now, or feel more different.
The geneticist appt we were supposed to have on Friday was rescheduled because they didn't have all the results back yet. The new appt. is Feb 6th and we should get the MRI results back.
I'm not sure who this kid is...I found his pic on the internet. But the feeding tube he has looks just like the one we were shown, the one Camden would be getting. We joked that it looked a lot like the nozzle on an inflatable. Actually it really does! Please continue to pray for our little guy.
8 comments:
Hey Becky - been a while! how r u? you look gorgeous. Listen, MOST of my patients have feeding tubes. some have a button like this little guy - it is NOT a big deal for them, but provides excellent nutrition and ability for the body to grow/ function / get better. Easy to remove, simple surgery to place initially. If it means he gets all he needs, I'd totally do it! Hang in there. you guys are doing such an amazing job with Camden. he looks SO happy!
We want Camden to get all the help he can and are behind you 100%. Let us know if there is anything we can do. Love you, NANA
Hey guys,
I am in total agreement...I say go ahead and do it. Who knows what will happen once Cam gets all the nutrition he needs! Plus, it's totally reversible, so as I say to my patients...let's give you what you need now to get stronger..and we can revisit a removal date later!
I have to tell you, it is IMPOSSIBLE not to feel better just looking at Camden. I am having a fairly lousy day, but seeing his smile perks me up instantly. He is an Angel.
love you guys xo xo xo
Wendy
I understand your worries, but think you guys are making the right decision. The tube is not so obtrusive and you want that little bean pole to fatten up, right? Take a cue from his cousin Wyatt. We'll continue to pray, good luck with the other test results.
Love ya lots,
Bill, Becka and Wyatt
Hi guys...long time no talk to. It's Heather, Kiera's Mom. Just wanted to let you know, our PT has told me stories of amazing progress once the feeding tube is placed. Our thoughts are with you guys...=)
From experience, the feeding tube is a bitter sweet deal. For my son, he was able to eat and enjoyed it prior to his feeding tube. He just was diagnosed with failure to thrive cause he has dysphagia and couldn't eat enough calories to supplement what he was burning. Essentially his feeding tube was crucial.
However, after the feeding tube and Nissen, he stopped eating all together. It faded slowly after his surgery. Here we are almost three years later and he still doesn't eat or drink by mouth. I'm not saying this to scare you, just know that it is a possibility. Then again, every kiddo is different.
Camden is in my prayers. I hope for the best!
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