Saturday, September 3, 2011

yuck city

so...many of you have heard that we have some things going on at our house. justin received a phone call from his doctors in cleveland on friday afternoon. they have received his latest blood work and results from his blood cultures. it has been discovered that he now has what is called aspergillosis...which is spreading. they want him back in cleveland immediately for treatment with a plan to stay. we are praising god's holy name because the doctors explained that with this new discovery...if he were to follow next months treatment plan (scheduled for oct. 18th in cleveland) it could have been immediately fatal. we are saddened that we now have a NEW disease to worry about (quick recap....scleroderma, polymyositis, interstitial lung disease, and all the new GI issues)....but we are glad that it was caught. for now there is no determined treatment plan. justin is flying to cleveland monday morning. the boys and i will stay behind until there is a game plan made.

friday afternoon was hectic to say the least. we were trying to get medical records to cleveland at 4pm before a holiday weekend. doctors were calling left and right and emotions were at an ALL TIME high.
they will do more lung biopsies and was told to be prepared for long term IV treatments. we are also still awaiting biopsy results on his esophagus and small intestine. please pray for protection of our minds and hearts as we are continuously on information overload.
we refuse to panic. we are scared and majorly frustrated...but we will continue to lay these burdens at His feet. we have heard bad news after more bad news on top of more bad news for 3 months straight. enough is enough :(
there are several families that are going to join us in the makers diet. we feel that in addition to this lifestyle being a way of has been proven to help tremendously with many of the symptoms justin has. if you are interested in joining us...please let us know and i will direct you to the private blog we have set up where we will explain the diet and share recipes etc. we have someone that is helping coordinate meals for justin there in cleveland (amazing!) so that he can eat in a healthy way and hopefully feel some relief. we start tuesday...please pray about joining us.
they boys and i walked in the kendall county labor day parade this morning for Boerne MOPS. thanks to some great gals who did some hard work...our little float won 3rd place!! it was HOT but we all had fun. bryce and i are headed for a date tonight with some special friends and we got to spend some time with Justins parents yesterday and today too! we want to keep things as "normal" as possible for the boys. bryce has been asking more and more questions...and was so very sad to hear that justin is headed back to cleveland. pray for his little heart.

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