WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, January 30, 2012

Mito, Abby and GI...

So it seems Abby's gut is not planning on bouncing back anytime soon and I need to get some vocabulary under my belt if I am going to be any use to her getting through this.

First up- Gatroparesis- http://en.wikipedia.org/wiki/Gastroparesis (I know wikipedia isn't perfect, but I love it!)

2) Motility Disorders - http://www.aboutgimotility.org/site/about-gi-motility/disorders-of-the-stomach/

3) Eosinophilic enteropathy-http://www.curedfoundation.org/aboutee.html

4) Bilirubin- http://en.wikipedia.org/wiki/Bilirubin

5) PreAlbumin-http://labtestsonline.org/understanding/analytes/prealbumin/tab/test

6) Elemental Formula's-http://www.eosinophilicesophagitishome.org/eosinophilic_esophagitis_diets/eoe_elemental_formula_diet/

7) G-tube-http://www.nlm.nih.gov/medlineplus/ency/article/002937.htm

8) J-tube-http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000181.htm

9) TPN-http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601166.html



12)There is about 10,000 more vocabulary words I will have to learn on this leg of the journey.

The most frustrating part is that we follow all the advice and despite doing the right things her gut still is not functioning right. Just as we think it is "healing" she crashes again. May I say, as usual, it is the Mito Moms and Dads who have talked me through this and answered all our questions- Thank you Mito parents! IT would be great if the Houston MedCenter would create a 1-800 nurse line just for Mito patients... I can dream right?

As usual we are putting a lot of hope into maybe if we fix her nutrition it will help with her ever growing lack of energy which we have been blaming on the Mito up to this point. She has a lifetime of difficulty with food, so perhaps it just went over the top finally. Starting to feel like that bounce we are waiting for is either in no hurry, or isn't coming.

I suspect weds will at least bring an elemental formula to help her nutritional status- my question, how the heck am I going to get her picky palate to drink the stuff?

Who knows, maybe this is all from an allergy, or a bad gallbladder- or some other common and fixable issues- I can hope right?


babyfoodsteps said...

thinking of you and hoping your appt. goes well on Wednesday! Hugs, just another "leg" or "small intestine" of the journey, right?? :)

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