Yep, you read that right...Camryn has pasted 200 days! We are so thankful, 200 days that have been a whole range of emotions, but mostly the emotion is thankful!
Last night we went and looked at Christmas lights with some friends and their families, we truly had a wonderful time. Camryn is Little Miss Holiday, seriously this girl has event planner in her future! She loved looking at all the details of the decorations and thoroughly enjoyed the evening. Wyatt enjoyed the fun too, but he spent most of his night on the look out for the Grinch. Wyatt hates the Grinch, he is scared of him. So Wyatt armed with a flashlight was on the lookout and if he saw on he had to keep on eye on him. He was too funny!
We enjoyed the evening...I think this might be one of the best Christmas seasons we have had as a family. The kids are much more into it and they are enjoying some traditions. Jason and I are enjoying creating some traditions and enjoying the fun of family this year!
Today was Camryn's clinic appointment...since both me and Jason are on vacation we decided to both go and bring Wyatt along to see everyone. We headed out bright and early, made it to clinic is great time and saw our usual favorites of friends. Camryn was on cloud nine to have Wyatt with her. We saw Dr. Ed and he was pleased with Camryn and her progress...Dr. A stopped in to say hi and wish us a Merry Christmas. We love Dr.A, he has been a huge blessing to us! We saw Nurse Maureen because Nurse Charlotte wasn't there, but true to Nurse Charlotte form she had a Christmas gift waiting for Camryn. And Camryn had one for her too! These two have quite a bond, I love it! When it came time for labs since Nurse Charlotte was not there we thought Camryn would just do her labs in clinic and not go over to procedure center. Well, we were wrong. Camryn headed over to procedure and asked one of the nurses there if they would please do her labs...it was too cute! Sid said they would and asked her if she wanted to get her supplies together and of course she did. I stood in awe as Camryn went to the supplies, pulled out all the necessary vials, all the right colored tops, the flushes, alcohol wipes, and the stat stickers even...yep, she is in full command of her care and I love it!
We have always known that there was something unique about Camryn in that from a very early age she loved helping the nurses and being completely aware of every detail of her care. And now at almost 6 she is completely engrossed in it and you know I love that the nurses there allow her to be her. As Maureen drew her labs and Camryn chatted with her about her lumen's and their names I just smiled at this wonder I am gifted with in Camryn. She leaves me speechless.
And sitting just a chair away another wonder...Wyatt wasn't fully sure of clinic. He did not want a bracelet, he did not want the doctors to look at him, but boy was he aware of his sister and did not let her out of his sight. I sometimes wonder if he thinks she is staying at UCLA so he stays close to make sure she is coming home with him. As he sat watching all the ends and outs of Camryn's exam and listened as Dr. M came to chat I just marveled at this miracle in curtain area 4...two little kids who just amaze me moment by moment.
Dr.M came to see us and it was great to see him. He said that he wants everything to stay the same throughout this Christmas week, doesn't want to mess with anything so that Camryn has an event free Christmas, medical event that is. Starting Monday Camryn's steroids will be every other day...WOOHOO! And her clinic visits moved to every three weeks...another YAY! Camryn was happy to see Dr.M as he has traveled quite a journey with her since 2 years old...and Wyatt since he was born.
We said our good-byes and Merry Christmases and headed over to the "big hospital" as Camryn calls it. We went to the third floor to deliver the gifts we were given to donate to the Hemoc kids. Camryn was thrilled to share the gifts with the hospital, excited to give to kids who as Camryn put it, "are just like me." We said hello to some of our nurses and dropped off a little treat.
As we headed home feeling incredibly blessed by the amazing people who take sweet care of our little girl. Words cannot adequately express our gratitude...they are our heroes.
Tonight we baked some Christmas cookies and decorated them, although Wyatt had more fun eating all the decorations before they made it on the cookies.
I must admit that I really enjoy the pace of vacation this year...I don't feel rushed, but rather we are enjoying our days together. We are thankful...grateful and appreciating the immeasurable gift of Christmas.
And along the way saying many thanks for 200 plus days...