Monday, June 27

Time for the motility study

Just what we were looking forward to today... right?  Two hours in this...


3 comments:

  1. Awww..... poor little man. My son has severe GERD (gastro esophageal reflux disease) - as well as Down Syndrome. He's also a tough gainer. No G-tube but it's on the table for discussion at our GI doctor's on a regular basis. I'll write you an email on some of the stuff / meds / positioning that has worked for us. In the meantime, I'm just going to lift your little fella up in prayer tonight. He's so sweet.

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  2. Hi, me again from last night. I lifted your little guy up in prayer last night and will continue to pray for his abundant health. I

    Just a thought... I think you mentioned he had a G-tube (I need to re-read the post) and that he didn't take much other than purees. It is something that came to mind that sometimes when you get a G-tube, you also get a fundoplication surgery, and sometimes this can cause an unpleasant sensation when you swallow food. It helps if the child chews lots / eats more slowly to reduce the swallowing discomfort. This is what I have heard anyway - my son is still tube free so I don't have direct experience. Maybe if he's struggling with foods like crackers... it could be that he hasn't had enough practice eating... or that it's a lack of practice combined with a bit of discomfort? I really don't know much but ask your GI about this. I am working with an Occupational Therapist to help my son learn to eat. He's 20 months and will only eat a tiny tiny bit of puree once or twice a day... but I found when I got the OT's involved it helped. We are still mainly on liquid nutrition.

    Anyway, God bless you. You are an AMAZING Mom and your little James is just adorable!! And the rest of your kidlets are just as sweet as can be too! I really hope and will pray that you guys find a solution that helps him and works for you.

    God bless.

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  3. Okay I just re-read the post. I see he's completely self fed with a cup now! That is awesome!!!!!! Way to go James!! Way to go Mom and Dad too, I bet that took some patience!

    Well I think you are on the exact right path...which doesn't surprise me because you guys are awesome parents!! :) I think having the GI folks take a really good look at it, especially the motility aspect, is the right next step!

    The only other thing we have done for our GERD kiddo is nighttime positioning (they have incline beds) to help reduce reflux pain... and Nexxiu*m. We give him one Nexxiu*m 20mg pill per day, in the morning, 30 minutes before a feed. We dissolve the Nexxiu*m pill into water and give it to him via an oral sryinge. We started on Ranitidin*e, moved to Omeprazo*le, then onto Prevaci*d .... and then found Nexxiu*m which has really helped things a lot.

    Anyway, God bless again, and I'll keep on lifting James up in prayer. I am sure that one day soon he'll be chowing down on cookies... :) A little determination and a lot of love will get him there. :)

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