An update on Cohen's medical issues...
Well as you can see he is eating some solids. Squash in the above picture. I have been working with a nutritionist to come up with some solid foods that Cohen can eat. Its hard... he cannot have fruits (sad), he cannot do many carbs, nor most veggies. Most of the finger foods out there for babies like teething cookies, etc. contain sugars. He cannot even have Cheerio's. They too have sugars. The kicker for Cohen is that he cannot have sugars (all kinds), fruits, or starchy veggies. He cannot do a lot of supplements like honey, molasses, or maple syrup either. Oh and no Splenda!
So my list of foods he can eat so far is small. There is very little info. out there on this deficiency since only about 1,500 known cases exist. So I may have to start getting creative, start up a CSID (Congenital, Sucrase, Isomaltase, Deficiency) blog and document our story of how we find solutions and alternatives for Cohen.
There is a blog on the March of Dimes (http://www.shareyourstory.org/webx?127@@.eeb08c3) that really makes me feel lucky that we found out about Cohen early. Some of the stories are terrible. There are kids that have different forms of this condition and some kids are worse off than others. Cohen seems to be okay for now but the kids that had been eating sugar for a longer period of time have had some real problems.
Cohen is putting on weight and we go back to see the GI specialist on January 12th so we will have an update then. Until then he is allowed to eat only a few solids so he is mainly on his formula. Oh, and his runny poop is now solid! I never thought I would be so excited about shit!
3 comments:
Yessssss, solid poop :) He has chubby little checks now! I will be contacting my doctor on Monday with the name of Cohen's condition and he to will be researching for us. I went in for my back and said hey doc any ideas and he told me to give him the name. Will let you know what he comes up with. Hopefully our weather gets nicer before you all are coming home, it sucks right now!
Merry Christmas & Big Hugs
i think i almost see a little chubby cheek. i can't believe how rare this is... you are doing so good with your research. such a good mom alicia. ooh.. i think our weather is awesome. i am loving the snow. hope you are looking forward to it:)
So glad to hear that he is gaining weight and doing better! Cohen now officially weighs more than Payton, thank goodness! Hope all is well! Travel safe over the holidays! :)
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