Fun Weekend!

Kya is having a good week, but she had a great weekend!

Kya spent the whole weekend at the river place. There is only one thing that she likes better than going to the river place and that is getting to stay there! Since we had a long weekend she took a retreat with Kaysa, Kaden, Grandma Trish, and Grandad Frank. They spent all day Saturday, Sunday and Monday at the river and stayed Saturday and Sunday nights. Lake and I went out Saturday and Sunday, but we didn't stay the night.

When I asked Kya what all she did at the river she said they played in the sand, they played on the playground equipment, they rode their 4 wheelers, they took nature walks, they played in more sand, they went fishing, they had a fish fry, they played on the swings, they roasted hot dogs, they played in the rain, they played on the slick slide, and they played some more. I think you get my drift. She just enjoys the independence and relaxed environment that she gets when she is there. She knows that there are no doctors, no shots, no needles, just lots of rabbits and squirrels to chase! After playing hard for 3 days she was still not ready to come home! (I think she would live out there if we would let her.)

One lesson Kya did learn this weekend is not to always follow Kaysa's example. Kaysa decided to ride a small lawn wagon scooter device down the sidewalk on the hill. It worked pretty good for her and Kya thought it looked like loads of fun. However, being 2 not 6 made a large difference when she hit the end of the sidewalk and in her decision making skills. The scooter popped up from the change in surface and lack of weight and Kya went flying. Luckily we just had a skinned nose, some severe grass stains, and bruised pride.

Also, Kya made a new discovery while spending so much time at the river. Saturday night she learned that there are these animals that make a really loud howling noise around night time. Being a concerned 2 year old she needed to know what they were. Grandma Trish did her best in explaining what a coyote was, but in the translation of a 2 year old they are not coyotes. They are Grandad Frank's River Doggies that yell at night! (Whatever works!)

Needless to say she is doing so much better! We are just amazed daily at her progress and thank God for answering our prayers!

I know that it sounds like everything is back to normal, but actually it is just a new normal. The part that I leave out is she can't be in the sun between 10 and 4, she has to put the strongest sunblock available on first thing everyday no exceptions, she still takes 11 meds a day given in 9 different syringes, her daddy has to give her a shot weekly that makes her sick, and she still takes an IV infusion that lasts about 2 hours every other week! But, Kya is a very strong and determined little girl! She is getting her muscle strength back more and more everyday!

We have learned to focus on the positive changes in her life, live each day with the new normal, and be thankful that we have another day with each other! Kya has been such a blessing to so many people and has already changed a few lives.

We take many things for granted in our lives and our bodies are the most common thing that many of us mistreat. I know that Kya's disease has made me more aware of taking care of my body and my weight. My father in law has stopped chewing tobacco because of Kya's diagnosis! (Congratulations LD. We did notice!) We have learned that we should take care of what we have, because some people don't have that option. While we were attacking our own bodies, Kya's body was attacking itself!

Once again I want to thank you so much for the many prayers and cards! You have been such a support to our entire family! Please continue to pray for Kya. She is much better, but still has a long road ahead of her!

Thank you for your support!

Kalee