Friday, February 10, 2012

Eosiniophilic Gastroenteritis (MORE)

I am still trying to wrap my brain around this diagnosis...It is such an answer to prayer to finally know what we are dealing with. But it is also so very overwhelming as I try to figure out how we are going to adapt to it. It is also hard because he does have some emotional attachments to some foods, that he will no longer be able to have. I had a very lengthy conversation with his GI doctor, Dr Zella today. Can I just say what an aswer to prayer he is? It is so wonderful to have a doctor who actually takes the time to listen to their patients, values their opionions, and actually works with them to make the best possible plan. We had a discussion about past biopsies that were done, and why this hasn't shown up before, we talked about the allergic component and how Sam's allergy tests have always come back negative....we talked about treatment, long term care/outcomes, and a variety of other things. I feel better (kind of) then I did, or at least feel a little bit more like I know what we are dealing with, but it will be really good to talk to the specialists next week and really get a more concrete plan. I can't event tell you how blessed I was today. I got a message on the lovely facebook from a sweet friend. Saying how she wanted so desperately to help but didn't know how. She then went on to explain that she requested books to come to the library about strict food restriction diets, and has been doing research for what and where to buy things for Sam!!! I am still shaking my head and smiling. What a tremendous blessing! I do feel so overwhelmed and kind of don't know where to stop, but Steph has taken the lead. So we will see the head of GI at MGH next week, as well as a specialist that deals with eosinophilic disorders. I can't wait to get those appointments in. I have been doing a lot of reading and building my question lists. It will be nice to have more answers and less questions. Prayer requests: -that Sam will have no difficulties adapting to the new diet -that he will have QUICK relief from symptoms and realizes he feels better because of what he is eating (the doctor said it could take a few months for him to feel better) -that we can afford to feed Sam all of the new foods, that already seem so much more expensive than what we are used to paying -that the specialists can isolate exactly what has caused this and then that we are able to reintroduce foods back into his diet -that I have the energy to make the new foods, do the new shopping, go to all the new appointments, and be the best mom that God wants me to be Sophia and Matt went to daddy daughter date night at church tonight, I will let you know all about it tomorrow:-)

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