New Cure JM Video

Saturday, January 30, 2010

A Snowy day to play!

We have been in the house since Wednesday night due to the snowy storm. But today we actually had a beautiful day to get out and play in the snow! We bundled up and headed out to go sledding!
Kaysa and Kya had a ball! Kya enjoyed riding the 4 wheeler and pulling Kaysa on the sled. Then her and I decided that we would ride. At first, Kya was a little uneasy, but she ended up having fun. We played in the snow for several hours. (of course we had to take a lunch break and warm up) But they continued after lunch with snowball fights, creating a snowslide in front of Grandma Trish's house, and more sledding! Actually, Kya stayed at home during the final sledding adventure and made a chocolate cake and hot chocolate. (We were glad she did.)

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!

Please continue to pray for her and a full recovery. We appreciate your prayers and support. Thank you so much to all of those who continue to pray without ceasing. We know that it is with all the prayers that Kya is doing so well!

Thanks again!
Kalee

Friday, January 22, 2010

Kya is doing better.

A quick update on Kya. Her stomach is feeling better and she seems to be feeling better. However, she is running a fever. Right now she is taking a nap and resting. Hopefully tomorrow she will be all better! Please comtinue to pray for her.
Kalee

Thursday, January 21, 2010

Say a prayer please!

Kya is not feeling well today. She is very sick at her stomach and she has matted eyes. She is crying and saying that everything is hurting. We are going to the doctor this afternoon so please say a prayer.

Wednesday, January 13, 2010

One Year, Can You Believe It?

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

Monday, January 4, 2010

Taper away!

Today we start the Cellcept taper! It is a bittersweet day. It scares me to be changing yet another med, but I am so excited to be descending down this mountain of medicine and treatments. Kya has been off of her plaquenil for 2 weeks now and seems to be doing good and doesn't show any signs of change. So today we are decreasing her cellcept dose by 0.1 ml per dose. I know it isn't much, but it is a start and in this game every change is big!
Please pray for continued healing in her body during this taper process and that she continues to improve while decreasing her meds. Also, please pray for Lake and I that we have the peace we need through this process. I know that I will be watching for every little sign of a flare reoccuring and that is stressful. We don't want it to happen, but if it does we definitely want to catch it at the beginning!
Again thank you for all of the prayers and support! We are looking forward to a year of progress and improvements. Please help us continue to support CureJM and help us find a cure for this disease! Thank you again for eveything!
Kalee