A glimpse of a child's battle with a rare degenerative disease and the legacy he left behind
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Sunday, June 19, 2011
My happy boy is back!
Ahhh- 3 day treatment almost done and I have one happy little guy now:) He is walking like crazy!!!!!!!Wish I could have caught this a lot sooner--but glad he is feeling better:) I need to get creative with his diet now....no dairy or bananas. He is so picky w/textures and won't eat crunchy or chewy things--my funny boy;) His belly is back to normal. He was so bloated, but I didn't notice because it was gradual--thought he was finally gaining weight:( I love that he is happy and playful again!!!! I just LOVE this kid!!! And my Tyler and Noah:) I'm sooo very blessed:)
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So glad that he is feeling better! Have you tried green smoothies with him? I started making them about a month ago. Learned more about them at www.greensmoothiegirl.com My kids (all but Jacob) love them! I don't use any dairy in mine and it could easily be made without bananas. It has helped Bryce and Annalise so much with their BM's also.
ReplyDeleteI'm so glad he is feeling better!!
ReplyDeleteSuzanne
I was meaning to ask you about those Tammy--I'll check them out:)So your kiddos are off Mirlax? We go to the swallow test Tuesday....ugh. Any advice w/ drinking
ReplyDeleteliquids?
Bryce still needs the Miralax on occasion, but I think that as I become more brave and give him more of the greens he will not need it at all. I can't believe the difference with only a few teaspoons of the smoothie. He seems to tolerate it just fine every other way also. I'm not sure what Dr. McOmber and the nutritionist are going to say about it, but I'll deal with that when we get there. =) It just seems so much healthier than only feeding him the formula. Sorry about the swallow study. We HATE those things! Have you seen a nutritionist during the GI appointments. He always has us set them up together. If not, you may want to talk to Dr. M about that. As for advice with drinking, I don't really have any. Bryce lost that ability so quickly that we didn't deal with it much. I remember giving him just small amounts on a spoon, but that is all I really remember. Sorry. Hopefully, the nutritionist at the GI appointments will be able to help. Also, does Ryder get OT? Bryce's OT also does feeding therapy so she was able to help out a lot. Just a thought. Good luck!
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