We continue on TPN to optimize his nutrition for upcoming food trials. Things have been going fairly well, and another week at baseline, well- sort of. He has been tolerating the TPN pretty well. Overnight feeds at home allows him to be able to run and play all day, and just be normal 2yr.old. TPN supplying 100% of nutrition and no food trials allows us to be able to see him as a 2yr.old boy- learning new things everyday. We've really been enjoying this time with him....something we've only gotten in bits and pieces over the last year; and very little at all in the year prior. You would think we wouldn't even know what his baseline is with all the time he spends away from it, but a mother knows...
We've been enjoying the fall, enjoying the other boys, getting household projects done, and just getting things ready for the hospital admission (still scheduled for Oct.17). He has a scope scheduled for Tuesday, it is the first time in a long time we won't have our GI and I'm a big nervous about it; but it is the other respected GI and he needs to have it done in a long enough time before his food trial so the effects can wear off before the trail.
Coming out of "survival" mode can be an adjustment though, with Little man's FPIES being chronic- we are never sure what the day will bring, sometimes not what the next moment will bring. We have had to build some truly strong coping skills. Although sometimes, I'm still faced with new situations and not sure which way to cope. I am reminded of my Blessings and I continue to put my trust in my Faith.
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