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!

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 direction..lol 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.

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.

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.

Quick update since school started

A quick update on Addyson.  She is doing very well.  Addyson is loving 1st grade at her new school. Her teacher has been amazing with Addyson and is right on top of the sunscreen which is a huge deal. I couldn't be more happy with how the school handles her disease. She is almost done with soccer and getting ready to play basketball for the first time in December. She does complain about her next neck hurting from time to time. We see her New Doctor in January and I will talk to her about that.
Matt called Dr. Jarvis awhile back and he seemed very weak on the phone. Which breaks my heart b/c he pretty much saved Addyson and he will always have a special place in our hurts for that. I hope and pray he gets better soon b/c we are so lost with him and having a trustworthy doctor to go too. 

Lab results and visit with new Doctor

Addyson had her blood draw a few days ago and during her visit today we got the results back. Everything looked perfect. Her LDH was high but nothing to worry about because it could be she is growing. So we are headed in the right path. This is our 2nd visit with this new doctor here at OU Children's. I still don't get a good impression of her and she doesn't seen to know much about JDM. Which makes me extremely nervous. Luckily we are keeping everything the same for now. Which I want to do until I met with another doctor anyways. Our plans were to go to New York this summer to see Dr. Jarvis. I knew he was in the hospital as we called his cell phone but after not hearing from him in months I finally found out he will not be returning to work. Whatever is going on with him must be very serious. Which makes me sad because I love Dr. Jarvis. He has been with Addyson since the beginning. So I have been trying to schedule an appt with Dr. O'neil in Indiana. But they want Addyson records before they will make an appt. Easy enough, right? Yeah right!! Dealing with OU children's is unreal. I have been to OU and filled out a release form on June 29 and Indiana hospital is hasn't received them. Ugh so frustrating all of this is.  Then After taking to the Children's Hospital in Indiana I ind out Dr. O'Neil is having surgery. Hopefully nothing serious so I can get Addyson an Appt in Sept or October.

Overall Addyson is doing very well. She has been in gymnastic and is doing great. She learned how to swim and this fall she is going to start Soccer. So she is very active. She will be starting 1st grade very soon. She is ready to go back. We also got her a little kitten. It is her best friend. It goes with her everywhere and sleeps with her at night. We named him "Romo'. Daddy is a Dallas Cowboys fan and we already have a cat named Dezzie...lol Life is going great for Addyson and hopefully we can get through our Hot summer with no flares!!!

Addyson with Romo

We saw the Eye specialist for Addyson's black spot in the back of her eye. Thankfully it is just a freckle and nothing to be concerned about. he wants to see Addyson every 6 months to keep an eye on her because of all the medicine she was on in the past and what she is on currently. He actually even has a couple older patients with JDM. Amazing your don't meet many doctors or people that know what it is!!

This was a huge relief because just like when she was diagnosed you go online and look what this could have been. And I knew after reading that it was either going to be a freckle or cancer. I'm not sure I could have handled Cancer with everything Addyson has been through the past 2 and half years. My son is also having issues and I think God finally realized I need a break!!!

Still waiting on a Phone call back when we will go see Dr. Jarvis in New York! Not really excited to go but really what to get this disease under control and in Remission!!

Update on Addyson

Last week, we met with a new doctor at OU Hospital for Addyson. Let's just say it was a horrible experience. The doctor was nice but she didn't know the disease. She said she had been in the lab the past 5-6 years and hasn't even worked with patients. She couldn't tell me about why certain blood levels were high and she wanted to start Addyson on Predisone but couldn't tell me why. Addyson pediatrician wanted me to ask about certain shots for Addyson and she couldn't answer that either. She said she was going to call someone and find out about the blood results and NEVER got a call back. So in other words, we will not be going back to here. We will be following Dr. Jarvis to New York. We have already spoke with him and he is making Addyson his priority. He felt so bad for leaving is in that situation. Which it wasn't his fault, I blame the Hospital. She is the only rheumatologist left in Oklahoma. So in May or June we will be going to New York to get things under control with Addyson's disease. This is a life threatening disease and not a disease I am going to mess with.


Addyson has been complaining of a lot of headaches lately and she has been pretty tired. I got a letter from the school that Addyson failed her eye exam, so yesterday I took her to a eye doctor. I wasn't surprised when he said she needed glasses and it makes since why she was having headaches. She was so excited to be getting them. lol If she only knew. But the doctor also found something wierd in the back of her eye and couldn't figure out what it was. It was only in her right eye. So he is sending us to a Pediatric eye doctor to have him look at it. Her appt is on April 24. I will update once I know but hoping it is nothing to worry about.

Blood results

We took her to see Dr. O'Neil for her appointment and to get her results. Addyson still wasn't feeling the greatest but overall is doing okay. She still gets the rash on her cheeks every once in awhile. She has been weak and tired but since she has been so sick, I didn't know if it was the disease or the illness. The blood results looked pretty good. They were not prefect but were not horrible either. We are not going to change anything and leave all meds the same.

Dr. O'Neil is leaving in a couple of months and now Addyson doesn't have a specialist in Oklahoma. Ugh They said they are suppose to be bringing in someone that specializes in JDM but no one yet. So frustrating to know you don't have a doctor that lives in your state. Hoping and praying a doctor will come soon to OU children's Hospital that has dealt with JDM before!!!

Sick

Took Addyson to her peds doctor today. Surprisingly she hasn't been to sick during the school year. Her immune system is very weak due to all the meds she is on but so far so good this year!! But she has been coughing for about 4 weeks and woke up last night complaining about her ear. So I took her to the doctor and she has an ear infection and a sinus infection. It takes Addyson awhile to get over illnesses so hopefully this stronger medicine he put her on will work fast. She only had a few hours of sleep last night but today was the last day of school and they were having a Holiday Party, so she wanted to go to go back to school. So I took her to school and when I came to her party I could tell she wasn't feeling good at all. She went to bed at 5 pm!

Blood draw

It's that time again. Addyson had to get blood taken but this time we went to Mercy's lab. OU children's have changed who they have take Addyson's blood and instead of driving 30 min, we went to a closer Hospital. Addyson has had Mavia draw her blood since she was diagnosed at the age of 3 and she was not happy that someone new was going to do it. But she actually did very well. In fact she was laughing while they took it. All the nurses said she was the first 5 year old to be laughing...lol We will find out the results on December 22.

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!