update

I know it has been awhile since my last update. Addyson is currently off treatments again. She is still continuing to take the meds at this time. I would say her energy level hasn't changed much. For Halloween she made it down half of a street before she was tired and wanted to go back home. Sometimes it is just frustrating because she can't be a normal kid. Sometimes she is full or energy other times she falls asleep very easily. We go back to the doctor in December and we will draw blood then and see where she is at. Her rash on her face comes and it goes. She is still very moody. Matt and I just want her healthy and to act like a normal kindergartner. November 18, 2011 will be her two year anniversary of being diagnosed with this horrible disease. She IS still going to get to Remission, it just may take a little longer now!

Update

For the past month, we have noticed Addyson not wanting to walk long distances, getting very tired easily, and extremely moody. She even has been complaining of her legs hurting. The rash on her face would be visible and then go away. We knew something wasn't right. So Last week I had her blood taken after school one day. We got the results on Wednesday. The disease is back full force. Dr. Jarvis moved to New York so we had to see Dr. O'Neil. We had only seen her once before. She wanted to see Addyson ASAP. So I went and got Addyson out of school ( might I add I had just dropped her off 25min before I got the results). We went to OU Children's hospital were she was seen and given a treatment. They did a test to see how her muscles were doing. She was NOT up to where she should be. I knew that already though. She couldn't even walk all the way around the mall like she use too. She did okay during the treatment and the vein worked the first time. She was tired still but her face looked so good. Always does after treatments. The next day Addyson was okay, still tired but wanted to go to school. She made it through school but wasn't feeling good at all. She came home and feel asleep at 4pm on her bed. She did finally get up for a little bit and was still feeling sick and weak. She just laid on the couch with her little sister. Addyson's face looked like it did when she was first diagnosed. So we will start this journey again. Hoping we get her off meds and treatments very soon!

School starting

Addyson started Kindergarten on August 11!! She loves it and to my surprise wanted us to leave the first day we dropped her off! She is such a big girl! I can't believe she is in school. She has short recesses so I don't have to worry to much about the sun. It's been so hot this summer most of the time they can't play outside anyways. Her teacher and school know about her disease and we are also in the process of setting up her a IEP. Just in case she gets a flare. You just never know with this disease. But so far she is doing amazing and I have my happy go lucky little girl back!!!

OFF ALL MEDS

It's been awhile since I have updated on Addyson. 2 weeks ago she was officially taken off all meds!!!! yay!! So far she is doing great. We took her this past week to White water bay and she enjoyed the water slides and being outside being a normal little girl.

We did find out that Addyson's doctor Dr. Jarvis is moving to New York. He has done such a great job with Addyson we will probably be flying there for check-up's on Addyson.

Update on Bloodwork

I got a call about Addyson bloodwork and it all came back normal! Thankfully! So we will continue to taper her meds!!!

Addyson pictures

Here is a few of Addyson 5 year old pictures!

Bloodwork

Well right before we left, we found out Addyson Aldolase count was high! I took Addyson back today to get more blood taken and see if they are still high. So for now we just wait and see! I will keep you updated!