First Blog Ever...

Okay, I finally did it!!! Thanks to Heather Owens and Georgia Farrior as my teachers and encouragers, I have attempted to create a blog. Lately, I have been following several blogs and think it will be a very neat way to document our crazy life. I have to admit, it was a little intimidating trying something new. I really like the ease and "mindlessness" at which I post on facebook. However, I know numerous people not on facebook that would like to get  Wright's updates, so I am trying to accommodate all levels of internet access. Anyway, today in day hospital has proved to be a pretty good day if I do say so myself. Wright's labs on Monday were awesome!! Praise God!!!! And for the most part, were relatively unchanged today. A few things went up and a few went down, but no real big change. Adenovirus was <625 on Monday, so minus all the diarrhea CMX is proving to be successful. We are contending with a cough/runny nose issue that got better the 4 days we were home, only to flare again when we returned. I told the doctor we were allergic to Cincinnati and needed to get home quickly to get this dreadful allergy fixed. She partially agreed and gave us a script for allergy meds. Oh well, it was worth a try. Then the bloody noses that are self inflicted with Wright's pointer fingers, but none the less cause us a great deal of stress. Even though platelets were stable, we got some today just to be safe.Today as we were leaving the hospital he somehow got choked on a huge blood clot from his nose in the lobby. I thought for sure someone would see us and admit the poor guy. I got out fast. But not before he opened his mouth with blood all in it freaking out the other people on the elevator. He looked like something off a horror movie screaming with blood all in his teeth . I had to chuckle to keep from crying. We did meet Wright's new teacher today. He will see her once a week and the rest is up to me. Oh NO!!! All I can say is we may have alot drive by field trips. Teacher friends....HELP ME!!!We got other great news! We do not go back to day hospital or clinic again until next Wednesday. Yep, you read that right! God is soooo good, isnt't He? As long as he continues on this great path, we will only go to the hospital once a week. The other awesome part is we may get to go home again for an extended vacay once a month pending travel. Our doc will not let Wright travel in a car for 10 hours just yet, nor can he fly commercially.  I tried as best I could to pin down our doc on a "possibly home for good date". No one here likes to ever go there because its just not "good luck". Well, we know how our "luck" seems to be, so I did not press too hard. Basically, we need to wean Wright's steroids down to half per kilo, which is roughly 10 mg daily with no rebound GVH or other problems. We have to wean Wright VERY slowly because of his severe GVH history but also his history with fevers and body aches with steroid wean. I ask each of you to pray, pray, pray that he stays well and is successful with the steroid wean. That his liver and kidneys continue to function well. That his platelets continue to increase on their own as well as his ANC. This has been an extremely long and emotional ride and we are ready to be in Wallace for good with Daddy and Hill. Well, I think I have written enough for my first blog entry. I promise they will not always be so long!!! Maybe next blog I can explain to you where the title of our blog came from. Those who know me really well should know......that tickles my soul!