Kya is doing pretty good. She has enjoyed Kaysa being home and playing with her everyday! She seems to be staying pretty strong and she looks pretty good. She may have a light pink tone, but when it is 100+ degrees everyday until sundown that isn't a surprise. The sun has definitely been our enemy this summer! We have tried long naps during the day so we can play late in the evening into the night outside and when we have to be out we wear long sleeves, pants, and her sunhat! Along with 85 to 100 sunblock! But, Kya is great about getting all of her gear on and keeping it on.
Lately she has really started to develop into her own little person. She is kind of starting to leave the baby/toddler stage and go to the toddler/big girl stage! (This is a very scary thought.) Kaysa is her mentor and whatever she does Kya is bound to do. This is not always a good thing! In the last week we have learned what not to do and that Kaysa is not always a good influence. Lessons learned last week:
1. Don't play basketball on the asphalt with no shoes! (You will rip off a toe nail! Ouch!)
2. Don't eat frozen chocolate chips! (Unless you are ready to lose a tooth!)
3. Don't paint your feet with nail polish once you have lost your toe nail! (Yes I mean the skin!)
4. Don't fingerpaint on mom's wooden dining room table in new pajamas!
5. Don't spread the fingerpaint through 3 rooms of the house trying to clean up your mess!
6. Don't tell your little sister it is makeup and use nail polish over her entire body!(Once again skin from eyebrows, nose, arms, legs, back, bottoms of feet, you name it!)
7. Don't jump from the 3rd step of the ladder onto your bottom bunk bed! (Wooden headboards make huge bruises and knots!)
8. Nail polish does not easily come off of skin and it really is hard to get out of eyebrows!
9. Don't throw water balloons at people much bigger than you it hurts when they throw back!
10. Don't wear flip flops or go barefooted when you are missing a toe nail!
These are just a few lessons learned at our house last week! I guess kids just have to be kids and learn on their own, but some weeks it feels like crazy chaos! I was very upset at first when all of this happened, but then I thought about it. I am so glad that I have 2 girls that are able to get up and wreak havoc! I am so excited to see Kya up and playing and trying to do everything she shouldn't do that it is hard to be mad very long! And I know that Kaysa knows better. Then I think about everything that she has had to deal with also and she is just excited to have Kya up and playing with her and trying to be just like her that she doesn't think before she does things! She is just trying to entertain Kya and keep her happy and active! I did throw away all of the nail polish and makeup. The finger paints have been banned to outside and Kya is not allowed on the bunk bed ladder. Maybe this week will go a little better! (If not you may have to come visit me in Fort Supply!)
On a positive note, Kaysa got her back handspring by herself on the floor at Gymnastics! This is a big accomplishment and we are very proud of her. She really wants to go to team, but we told her coach we are going to wait until Kya's disease is a little more under control and we aren't traveling as much with her!
Kya can't wait to get back to dance. She would love to take gymnastics, but that is not an option! She is also mad because we aren't suppose to let her on the trampoline, Dr's orders! Overall though she is doing great considering the disease and everything it can do!
I also learned a lesson this last week. My friends took their little boy Gary, who is 2 and has JDM also, to Chicago to see Dr. P for the first time on Monday. By reading their comments I think they were a little disappointed with what they found out. Also, there was another parent who took their child to Chicago to Dr. P and they were disappointed also. However, that dad made the comment he went there looking for a miracle and they didn't find one. Basically, they were checked out just like we were and told that really there wasn't much else that she could do. That they were being treated properly, she didn't see anything wrong with their care, and that she would be a consultant for their treating physician if something came up. She also warned them to take care of themselves! Both families were disappointed with that answer and offended by her comment to take care of themselves. (which I understand she told me that also and I thought I know I have paked on the pounds you don't have to remind me!) But, it made me think really hard why I wasn't upset with my Chicago trips. I realized it was because they were looking for a miracle and I was looking for reassurance! I wanted her to say you are in great hands in Oklahoma and you are doing everything you can! I wanted her to say I know your child, I know her case, and when you need me I will be here for you! I wanted to have faith and confidence in the decisions we had already made and I got that! She only had to make a few tweaks and things were great!
I realized that we are that way with God sometimes! We get so disappointed because we are looking for a miracle instead of listening to him say YOU are doing the best YOU can do. I know your name, I know your case, and I am here to help when YOU decide YOU need me! He is the only cure! He is the only Miracle! We can look for everything here on earth and never find what we are looking for or missing! I hope and pray that everyone looking for a miracle anywhere else will realize that HE will provide it if we have faith! Kaysa has prayed from the start that Kya will be the first kid "cured" and she truly believes with all of her heart that GOD will answer her prayers! We as adults need to be more trusting and believing in our prayers and turn it all over to HIM!
Please continue to pray for us! (All of us!) Pray that Kya will adjust well to her new glasses that she should get this week. Pray for continued healing in her body, that it will adjust to the tapering of the meds, and that her levels will stay down without the IV Infusions. Please, continue to pray for the doctors and researchers that they find a cure for this disease and in the meantime that they are able to successfully treat each and every patient!
Thank you again to our wonderful prayer support! The cards and prayergrams that we continue to receive are so uplifting! We live in a supporting part of Oklahoma, not just our community but the many surrounding communities! Thank you again for everything!
Kalee
