Sunday, March 24, 2013

Spring Break 2013

Well Spring Break makes it 6 weeks since Addyson has been off meds. But she came down with a stomach bug and I didn't want to get blood taken with her being sick. Ill go get it down next week when she is all better. Addyson is also going to get her tonsils out on April 25! It should help her sleep better! We will see how long she is down for but hopefully not too long. I will update with blood results once I get them from her doctor in Dallas. Overall Addyson is doing great!!

Addyson's 7th Birthday!!

Addyson had an amazing birthday! She had many friends and family at her party. She decided to have her birthday at bouncin craze!! Her first real birthday party with friends. She had a great time even though she felt horrible. She ended up having strep! But you would have never known it!! Rosebeary made an amazing cake for Addyson. It was donated to her from icing smiles!!! I can't thank them enough!!!
The Birthday Girl ready for her party!

Addyson with her best friend Boston!

Addyson with her amazing basketball cake!

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.

Wednesday, January 2, 2013

Blood results 1-2-13

After waiting over two weeks for Addyson's bloodworm we finally got the results today. Her results were all over the place. Matt had to go get the results from OU since we could never get a nurse or the doctor to call us back. So Matt tried calling Dr. Jarvis. He has always been there for Addyson even when he was sick.  Thankfully he answered his phone and told us to not worry yet. As she was probably battling a cold. Which the day she got blood taken she actually came home sick because  she wasn't feeling well.  So hoping that is what it is. He told us to have her blood taken again just to make sure it's nothing else. But it's better than a flare!!! 
We also found out that Dr. Jarvis is doing better in his own health and will be back to work in Buffalo,NY!!! Yay that made my day. Addyson has seen Dr. Jarvis since she was first diagnosed and  we trust him and most of all Addyson is comfortable with him. . We will be making plans to see him once he is settled at his new hospital in New York. 
For now, we are headed to Dallas on Tuesday to meet a new JDM doctor for Addyson. We don't have a JDM doctor here in Oklahoma that really treats her disease so we made this appt 6 months ago. So until things are going with Dr. Jarvis we will go meet this one. I have her heard good things about this doctor in Dallas. So we will see. I will update after we meet with her on Tuesday.

Sunday, December 9, 2012

Addyson 3 year anniv

Addyson's 3 year Anniversary has come and went. It was kind of a bittersweet day. Thankful that she is doing very well but sad that she is still on meds. I think back to 3 years ago and how our world was turned upside down. I think Addyson handled it all better than anyone else in my family. Yes she was only 3 at the time that it all began but I can promise you this. My other two kids could not have handled what she went through and is still going through.

Addyson is loving 1st grade and is learning so much. She can read so well now and is continuing to amaze me daily. She has a memory I wish I had in school. Addyson had her first basketball game yesterday and scored two baskets. She was aggressive and loved playing. This is honestly the first sport i have seen her excited about! A few years back she could even walk around the mall and too see her running up and down the court is amazing! Its honestly the small things that she does that makes me smile!

Addyson will have blood work this week and we will now the results next week and right after the first of the year we will head to Dallas to meet her new doctor. Not having a doctor to handle this disease isn't fun. Luckily she is doing well or I have no idea what I would be doing. I will update once i know the results of her blood work.