Skin, GI Issues Arise AGGGGGAIN
We had a good weekend up in Galena thanks to our friend Ken and Janet lending us their beautiful home. You can tell so much love and thought is put into their family by the wonderful warm, loving place they keep there. We were able to get in a hike before the storm and enjoy deer and horses roaming around along with an ATV ride that yielded a few minor injuries but worth it we thought. While we try to relax and enjoy family time there is always something with Simons health that is looming over me. His skin has lead to a big outbreak that is not so pretty and itching him like crazy which we believe is causing him alot of mucus in the GI tract causing gagging and vomitting. Its a vicious cycle for this kid and it breaks my heart. He goes unscathed but he is definately more aware as to what is going on with his body and how it affects our moods. While we are so thankful for where he is and we celebrate the miracle that Simon is we still mourn what we expected it all to be like for our son. He deals with so many obstacles being couped up, not being able to be around friends and having classes and playdates to socialize and having the girls lives restricted as well. My heart is heavy at times, like today. I know we have to get used to what "normal" will be for our family but its not easy. Whle our daily thought is thankful our norm is far from a family whose kids are all healthy. Simon still does not drink more than 8-10 ounces so the rest (16 more ounces) needs to be put through his g tube just to maintain fluids. Its just frustrating to go through all of this and have to push so hard to make such slow progress. We will continue the push, we will prevail but in this day I just ask that you put in a word to God that maybe we can have a bit easier time of getting to that good day after day time so we all can relax and enjoy life as it was intended to be for a family that truly loves one another. Thank you and God Bless.
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