Saturday, February 9, 2013

MRI NEWS 2-6-2013

Well Addyson blood work came back prefect and so did her MRI!!!So we are taking her off cellcept and will draw her blood again in 6 weeks and then again in 12 weeks and see what it looks like. Addyson is so happy to be off meds again. I am so happy and excited but at the same time a little nervous. We tried this before a little over a year ago and 2 weeks after we took her off her meds disease came back full swing. But i have a good feeling this go around.

Now the MRI did show she had a pulled and a slightly tore muscle behind her right knee. Which makes complete sense. She fell off her scooter about a month ago and every since then she would limp or complain about her leg hurting especially during basketball games. But because she is such a strong girl. She still played and finished every game. so proud of her.

Her Birthday is on Valentines so what a great birthday present she is getting. We are celebrating her birthday with her friends here in a few days. I will post pictures and more about that special day.

So I'm praying Feb 7, 2014,  we can say she is in REMISSION. Fingers crossed!!!

Great Wolf Lodge and MRI 2/1-/2/4

We had a heck of a time trying to get an MRI done here in Oklahoma because she was an out of state doctor and didn't have privileges at OU children's. So we gave up and decided to just have it done in Dallas. Well since we have to be in Dallas anyways why not stay at a hotel that they will have fun while we are stuck there. It was a complete surprise and the look on their faces when they saw all the water and slides was priceless. My parents joined us which I am so glad they did. Every kid wanted to go in a different But they had a blast!! My son got sick and was coughing and kept us all up at night but at least they had fun. I guess that all that matters.

Monday is the day Addyson had her MRI. We had to be at the hospital at 7:30am. Yuck when you have three little ones that get bored. At least I took our Ipads for them. They were right on time. Matt took Addyson back until they had her asleep and we were out of there by 11:45. Addyson slept most of the way which was expected. Thankfully she didn't get sick since we had a 3 1/2 hour drive home.

Meeting with new doctor in Dallas 1-8-13

Today we drove to Dallas to meet Dr. Perez regarding Addyson disease and what is the next plan. We really have had a doctor to communicate with in about a year that we trusted. So its been an crazy adventure. First of all I loved Dr. Perez. She was very easy to talk to and knew the disease very well. She looked over Addysons Medical papers from the past 3 1/2 years. And this is the plan. Addyson last labs were off the charts but she also because ill that same day. So we are going to forget about those. Addyson had more labs done while we were in Dallas and and then we will Schedule an MRI to see how her muscles look and go from there. Overall a very productive day in Dallas! So glad we found a doctor at least in driving distance to us.