Friday, June 25, 2010

Feeding Disorder...Really?

If you have ever seen this baby eat you know how ridiculous that sounds. However, Joey was just diagnosed with a mild to moderate dysphagia (something I have suspected since he was about two months old). But to look at him eat... you would never know it. Here are the pics from the buffets in Las Vegas !
I needed to keep him busy with something so I could eat my dinner too... Hence, Joey's first chocolate chip cookie.
Here he is sampling a waffle at breakfast.
And the whole roasted sweet potato I was cutting up for him on the edge of my plate... He stole it when I wasn't looking.
And when we finally cut him off he gave us this look like... "what?.... I didn't eat that much...just look at the ground.." and you should have seen it! (big tips to the waiter/waitresses too!) Note the spinach ravioli on the side of his face. It was one of his favorites at the buffet at Paris.

I hate to say it but I love watching this baby eat... the way he picks up food and puts it in his mouth with such precision is so adorable to me.

With respect to the feeding issues... we have a follow-up next week to discuss the Speech Pathologist and Radiologist's report from the swallow study. We were referred for this study back in October. After months of phone calls trying to get an appointment and being told that there was a six month waiting list; being sent to the hospital where they almost conducted the wrong test; being told that they had no authorization from our insurance; losing Joey's referral (later to say it could not be found because it was in the STAT file); then finally, almost two months after the initial evaluation, we got the appointment for the modified barium swallow study. The study was done on May 28, 2010 and although we knew right away that he was silently aspirating liquids, I did not get the report from the Speech Pathologist until this week (after calling twice). Two more phone calls later and we have a follow-up scheduled for next week to discuss a treatment/feeding plan. For now, we will keep thickening all his liquids and pray he does not end up with pneumonia.

9 comments:

  1. UGH! I mean, I'm glad you are finally moving forward, but seriously! It's too long! Love the pics of Joey going to town on the buffet :)

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  2. Is his issue just with liquids? This sounds too familiar. Did your pediatrician have to give a referral to get you an appt? I have been wondering this forever about my little guy. He does great with table food, but again today I tried a sippy with milk - it was a joke. At 15 months we still use the 3-6 month size nipple on the bottle so he doesn't act like he's drowning.

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  3. First, I LOVE your new blog header photo. I can't stand how cute he is!!! As for feeding issues, you'd never know it by the way that boy eats solid food! Way to go, Joey! What a runaround you've been getting on tests and follow-ups, etc. I pray he doesn't get sick and that the treatment-feeding plan helps him.

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  4. Yikes! Well obviously Joey didn't get the memo because he's a very impressive eater! I can testify to that! Will be praying for him! Love, Megan Fera

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  5. Kristin,
    We did get the initial referral from our pediatrician to the speech pathologist. After the speech pathologist did the feeding evaluation we were referred for the modified barium swallow study. We just recently switched Joey from size 2 nipples on his bottle to a size 3 (which I think is a 6 month size) and we have to thicken it with "thick-it" to a nectar consistency. He still sometimes sound congested after eating but it is better than choking. His problem is mainly with thin liquids but they also observed some issues with a delayed swallow lack of coordination with solids. Apparently he has a really high palate and food gets stuck up there...but anyway...start with your pediatrician.

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  6. oh goodness! This sounds terrible and what I mean is all the trouble you went through just to find out something you already had a feeling about. What an ordeal!! So you thought he might have this because of his congested sounds after eating??
    I might have to keep my eyes on Max. He has that very high palate too and hides food up there for later which is so gross!

    Hope that the help comes smoothly so he gets it taken care of quickly!
    xoxoxox
    c

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  7. I'm so sorry that you got such a run around! I thought our 3 month wait was bad, but at least when we did go in for the study it was quick and no issues.

    For those that worry about their kids aspirating, please follow your instincts and push to get a specialist to look into it. We had an OT doing feeding therapy with Sweet Pea for 9+ months and she didn't say anything about possibly aspirating the entire time! I personally believe speech pathologists or OT's associated with hospitals might know this area better than OT's that mainly do traditional OT.

    We now use Simply Thick to get to a honey consistency. It's a gel and doesn't continue to thicken over time which was important to us. It's expensive though. :-(

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