SUNDAY AND MONDAY IN REVIEW

Sorry we haven't been up on the posts the last couple of days, but it has been a little hectic. We took Kya to the Dr. Monday at OKC and she ended up having to have another treatment. The Dr. was trying to space them out to every other week, but she isn't quite ready for that. One of her main enzymes, Aldolase, was elevated even more than what we would like for it to be, so we decided to do a treatment while we were already there. We definitely want to stay on top of the treatments and the disease.

However, the treatment and appointment went well. The doctor agreed to work with Dr. Pachman in Chicago and help us get a consultation with her. She is a pediatric rheumatologist who has dedicated her life to this disease. Dr. Pachman is one of the specialists and researchers we met in San Diego who has done all of the research and basically set the norm in treating this disease. So we are in the process, and it is definitely a process, of getting everything together to get in to see her and make the drive to Chicago.

On a positive note, Kya was able to hold her arms above her head for almost a minute and a half!!! That is huge. She could kick the doctors hand that was even with her knees while sitting on Grandma Trish's lap, and she could squat down and stand up with a little assistance and pushing with her arms. These are all things that she could not do even 2 weeks ago! The doctor was very impressed.

The blood vessel inflammation test came back in the normal range so Kya will start Physical and occupational therapy next Wednesday. This will help her get her trunk muscles back. Her trunk muscles are the ones that she has the most loss in and will need more specific help in. We are working with her daily for improvement in her leg and arm muscles.

When we got done with the Dr. and the treatment Kya wanted to go to dance. So we hurried back to Elk City and she made it just in time. She danced for about 30 minutes! This was great considering the day she had already had. She came out and said that she felt "shaky" and she didn't want to tap. I think her balance was just enough off from being tired that she didn't feel real stable.

Another huge improvement is that she has her spirit back and that is very important. Even though we may have "steroid tantrums" we are glad that we are progressing as good as we are.

Thank you for the many prayers! Each thought is appreciated! Please continue to pray for God's hand to be over this whole process and that His will is done! Thank you again to our family for their support from late night phone calls, to babysitting, to running errands, emails, text messages, meals, cards, stickers, and just emotional support we love you all! To our extended family and friends I never knew how many people could really care for one little girl! You have made a huge difference! To the people we have never even met that are praying for us I say "Thank You and God Bless You!"

With God in charge Kya will be in the best hands! My dad has always said "It takes a village to raise a child." I know for a fact that it will take at least that for this one and we appreciate you being a part of that process! Thanks again!

Kalee