Yesterday was day number 545 that Kya had to take medicine 3 times a day. But today there will be no night meds!!! She will take meds only twice a day first thing in the morning and after food. We are so excited! It has definitely been an emotional roller coaster and a long journey, but Kya is fighting a good fight. She is such an amazing 3 year old!
Last night we had our annual 4th of July get together with about 200 friends and family. The kids were doing fireworks, running around playing chase, and having a great time. Kya was in the middle of them all with her long sleeves, pants, and hat on. Besides that, she was just like them and never missed a beat! After the kids blew up everything they wanted to we sat back and watched the big fireworks show! As we sat with all of our family and friends watching fireworks I got a little teary eyed thinking about Kya. I just held her a little tighter and thought about the things she has battled over the last year and a half. She has become such a strong little fighter with such a carefree independence. She has knowledge beyond her years and accepts life as it is! Long sleeves, pants, and hat year round don't bother her. We were looking for her and she had led a group of kids to play with her under the fruit trees in the shade! She chose a table on the shady side of the barn to eat supper at and didn't sit with her firends in the sun. All of those decisions at 3 just amazes me!
Thank you so much for the many prayers! We know that God has brought her through this with such strength and courage. It is awesome to have such supporting friends and family! We love you all and greatly appreciate everything! Thanks again!
Kalee
Way to go Kya. Very smart girl. Gary is stubborn and warrior like. He is just beginning to understand that the sun is not good for him. He doesn't care. I am trying to get through to him through his siblings. He listens to brother and sister. Only 2 meds. Wow. We are right behind you hopefully ; ).... Mama T got your email. Rest up and get better. I will email back soon. Hugs, love, and prayers
ReplyDeleteDay 545 wow we are all counting!! We are all so proud of Kya and I am beyond elated that she doesn't have to take night meds! What a great little girl you have, a fighter, a sweet spirit, amazing! When I read about her choosing the spot in the shade, wow she is wise beyond her years and such a sweetie! We learn it is "our" normal to wear long sleeves, suncreen in Walmart, etc., and it becomes something we are custom to and our normal! Of course we get the occassional jerk when your older who makes comments and you learn to over come that too! You are the BESTEST MOMMY and Kya is lucky to have you as her advocate!
ReplyDeleteSorry it has been awhile since I have commented, as you know I have been sick and it's been hard for me to keep up with posts!
I cried when I read your sweet comment this morning! Thanks for your words of encouragment and being a good friend to me on here! I struggled with writing my vent post because like the 13 year old you mentioned I didn't want to sound whiney or like I was wanting sympothy because I want to be as NORMAL as I can! Then I thought if I write this others with this disease hopefully will read and see it is ok to write the good, the bad and the ugly....I want to raise awareness, that is why I started this blog, if someone can learn something through me than I have accoomplished ALOT....
xoxo
Summer
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