it has been a lot longer than i thought since i updated. 

on the last update i talked about joy being a little fussy and her temps stabilizing, well... she was fussy because we hadn't found the real problem and her temperatures were stabilizing because she was ending that stage of the disease.  We left soon after that I believe, but then a week later we went to her check up and she was doing alright.  She still hadn't been eating very well at all and was really fussy and had lost a little bit of weight.  I complained about her antibiotic because i felt as though it was causing the problems so the doctor changed it and we gave it to her that night.  We woke up the next morning to her broken out in a rash all over.  We called the nurses line thinking it was just an allergic reaction and that we could just switch back to the old medicine but they had us come in because they said it was routine with a reaction to have them stay overnight.  She was already scheduled to do some tests the next week and so since we were there anyway they did them then.  On the echo it showed the true source to all her problems.  Here coronary arteries were severely dilated and there was a small blockage.  That night they did big doses of blood thinners and steroids a couple of times and immediately she was our old baby!!  She slept well, she began to eat well, she was happier... it was amazing!  When we left then we thought it was all over.  We had to give her tons of medicine including shots twice a day.   When we went to her check ups (she now has three different doctors from three different areas- Infectious Disease, Cardiology and Rheumatology) and everything looked great.  The next check ups did too and the ID dr as well as ourselves, convinced the cardio dr to stop the blood thinner shots.  We were so happy!  The next morning has to be the worst day of my life so far, a night mare come true:

Joy woke up at her normal time to eat but was extremely fussy and didn't want to eat.  Christian took her from me to see if he could get her to calm down and he noticed that she didn't seem like she was really there and he put her under a light and she didn't respond to it.  We turned on the room's light and she stopped crying and went limp and turned white and then began to turn purple. Christian put her down on the bed and we tried to get her to breath.  I gave some rescue breaths and tried different things to try to get her to breath/respond to us...we called 911.   She began breathing before the ambulance arrived and they took us to the hospital.  We transferred down to Children's Mercy because it's routine to stay for 24 hrs when something like that happens.  They did an EKG and said that it was different than they last time we were here and so they have moved us the Cardiology floor.  They started her shots again (heparin- blood thinner) did some labs to check the enzymes of her heart and they did another echo.  The EKG's showed that there was a section of her heart that acted like it wasn't getting enough oxygen or was injured in some way, her enzymes told the same story (because they were elevated) and the echo showed that there had been damage done.  The conclusion is that she had a heart attack.  We went home in just a few days because and she was doing better.  Her heart rate and blood pressure was running high making her a little more tired on occasion but was overall acting fine. By the time we left (three days later) everything was coming down.

She's doing great now!  She rolled over from her back to her tummy for the first time today and so far has done it about 3 times!!! I'm so excited. she such a rollie pollie now!

So overall everything is going GREAT and i've exhausted myself and my time typing this out and probably anyone who has read it all.  Thank you sooooooooooo much to everyone who's been praying for precious Joy.

There's been a lot of other stuff I've wanted to log lately but I must end here.  lots o love