Update on Haley: So as we started this week Haley started having peeling of her hands and feet. Looking back to the beginning of all this we would search the internet for answers...could it be this....could it be that....people would facebook and ask have they checked her for this...well what about this...but there was one thing that she had alot of the signs of, but not enough to diagnose her. This was KAWASAKI DISEASE! It is a condition that causes inflammation in the walls of medium sized arteries throughout the body including coronary arteries which supply blood to the heart muscle. The symptoms of this disease are fever greater than five days, extremely red eyes, red dry cracked lips, swollen red skin on palms of hands and feet, swollen lymph nodes, and irritabilty. Second phase includes peeling of the hands and feet especially the tips of the fingers and toes, abdomen pain, diarrhea and vomiting. There is very little known about this disease they think either a virus or an infection triggers it, but there is a theory that carpet cleaner triggers it. Needless to say I cleaned the carpets with carpet cleaner about 4 days before we left for the beach! So the drs now believe that Haley after havin 2 strokes and seizures has KAWASAKIS DISEASE now that she has the peeling of her toes and feet although Haley never had coronary heart issues. In kawasaki there is almost always heart involvement., but the drs say its just to much evidence not to say that she doesnt have this. STROKE in Kawasaki is rare but, I guess were one of the cases. So Haley will have to have more Heart tests and she will have to see a heart dr the rest of her life. This disease puts you at increased risk of heart attacks. The treatment for this disease is IVIG and high dose Aspirin. Haley has missed the window for IVIG but she is on high dose Aspirin. They are still doing tests on her for different things and there are labs and genetic testing we are still waiting on but it feels so GOOD to FINALLY have a diagnosis. So now we have something to blame on what happened to our sweet precious babygirl. I hope that theres someone out there that didnt know about this disease that does now because this is a serious disease and if caught early it can help save a life. Haley is doing good in therapy she got her brace for her leg today and she has a soft splint for her arm. She walked up and down steps today still weak but trying her best. They tried to put a restraint on her right arm today so she would have to use her left hand and arm it worked for about 10 mins then she was very angry and upset. She is moving her fingers very little, but a little is alot. Haley now has tremors in both arms and legs from the second stroke. They will try again tomorrow with the restraints. They are hoping to retrain her brain. THANKS to EVERYONE who has supported us in some way, praying, calling, sending cards, donating things, thinking about us, volunteering your time to sell tickets, the bake sale, sending money to us, and everything in between we can not tell you how much it means to me, Shawn and Haley and we thank you from the bottom of our hearts!!!! We are blessed!!! Keep praying for our family!!! Love to ALL!!!
Posted on: Thu, 14 Aug 2014 02:25:28 +0000
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