To everyone in blogland, thank you for reading and following Kya's Journey for a year. I hope that you have gotten use to my flighty stories and my crazy updates, but this is truly my vent! Thank you for keeping up with Kya and spreading the word about this rare disease. It is hard to believe that a year ago we were just starting this journey knowing nothing about what we were getting ourselves into. All we knew was that Kya was sick and needed help! That is exactly what we received. We received help from specialists for Kya, support from family and friends, words of advice and encouragement, and lots of prayers!
I actually avoided doing this blog Saturday, on the actual day of her 1 year anniversary, because I didn't want to cry through the whole thing. Guess what, It didn't work! I can't even get through a paragraph without tears! It is so hard to put into words how we feel and how far we have come. I can't even type it and Lake thanked the church Sunday and sang a song for her! Way to go Lake!
It has been such an emotional journey for all of us. From testing your faith to making you realize the important things in life. We celebrate every little milestone and have slumber parties just because. We have our good days and our bad days, but we always praise God that we had another day! We all have learned to deal in our own different ways, but always know that we have each other to lean on. Then there is Kya! LOL
Kya has become such a strong fighter. She has grown in wisdom beyond her years. She can spot a white coat from miles away and knows the road to Oklahoma City and Chicago! She can run and play and laugh and fall down and get back up and everything that a normal 3 year old can do. She can tell you that she has Juvenile Dermatomyositis and tell you that germs are bad and that they will make her sick. She will encourage you "That everything will be OK! Be Strong! You can do it!" like she has been told a million times this year. She has strong ballerina legs and will dance to any beat she is given. She is a miracle and continues to get stronger everyday! She will take her own medicine and tell you about her port. She will tell you about Dr. Pachman and prays for her every night. She is a ball of life and we love it!
I am so glad that she is doing this good. It makes me excited to look toward the future with a hope of remission and no medicine! However, I know that is not a guarantee and if we do get there how long will she stay there. So many indecisive answers and so much unknown. But we have to have faith that God will get her through it and that He will take care of her forever!
Thank you again for all of the prayers and support! You can't imagine how uplifting it is to see a comment or a post or hear a word of encouragement. We know that you care and are praying for her! Please continue to pray as we taper her medicine that she does not flare again and that she can handle the taper.
Thank you again!
Kalee
Kya seems to be better, but she still has the yellow snotty nose. We go back to Oklahoma City and see Dr. O'Neill on Wednesday. Hopefully, we can have a blood draw and see how she is doing. She still is off her cellcept because she shows signs of a sinus infection and we don't want a major infection. Besides that, she seems to be doing great!