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!

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!

Make a Wish Trip

Feb 10, 2011

The day finally arrived for us to go on Addyson's Make-a-Wish trip to Orlando! We actually were suppose to leave Feb 9th but do to a snow storm our flight was cancelled yesterday. But that okay because at least we still get to go! Our flight left at 8am and we arrived in Orlando around 3pm. We were met by a volunteer to help us get our rental car and help us get to our Village! By the time we got our luggage and got to the Give the Kids the World Village it was around 5:30. The Village was amazing!! You could get ice cream and pizza all day long! If you wanted they fed you every meal. They had so many things going on it was crazy. The night we got there was winter wonderland. So Addyson got to see Santa and get a gift. She choose a light bright! We had orientation that night to receive all our passes to the theme parks and anything else we wanted to do. We got to bed at a decent time because we knew it was going to be an early day tomorrow!

Our home for the week!

Feb 11, 2011

Let the fun begin! We got to Hollywood studios around 8:40. The park opened at 9am. The first ride we rode was Addyson's favorite Tower of Terror. There was hardly any lines. Not like that matter though. We got to go through the fast pass lines on every ride!! We then went and rode Toy Story a few times and some of the other attractions. We ran into Character everywhere including "Lotso" from Toy story 3. Again they took us right to the characters and we didn't have to wait in the lines.

We also saw Beauty and the Beast play They gave us front row seats. Afterward the play, they had Addyson stay after and come to the back where the prince and Bell and some of the other characters were waiting for her. They gave her a rose! We rode a few more rides and by then it was starting to get Dark and it was actually pretty cold. So we headed back to the Village!

Feb 12, 2011

Before we left the village, Addyson got to go Horseback riding! She loved it!! Today we decided to go to Universal Studios! Wow they treat make-A -wish families like they are royal!! They escorted us on every ride! No waiting at all! no waiting at any characters. We went and saw the Barney show and they had us stay after to meet Barney and get pictures with him. Addyson really liked this show! They had a great kiddie area! Then we saw any animal show with all sorts of animals. Again they let us stay after the show and we got to have our picture taken with the Dog from Men in Black!! They were beyond amazing at Universal. we got through everything pretty quick since we didn't have to wait on anything! Which was great when Matt and I rode the stuff Addyson couldn't get on! After Universal we headed to Downtown Disney!

Feb 13, 2011

Today we went to Sea World. We went and saw a lot of their shows. They had a really good Dolphin and whale show. Then we saw another animal show and of course the Shamu show! They were all very good. They did have some really good roller coasters for Matt and I! In fact the park was dead, I even rode of the roller coaster all by my self. I will admit, that was a little freaky! Addyson favorite ride was Journey to Atlantis. It was a ride like Splash Mountain. Let me remind you it was cold outside. But Addyson wanted to ride it.So we went on and Matt got soaked!! Addyson laughing of course! They had dryers at the end of the ride if that tells you anything! Addyson wanted to ride it again so while Matt was getting dry, I took Addyson back on it. Big mistake, I got soaked that time!! lol We let around 3pm and went and ate at the Rainforest Cafe and walked around some more.

Feb 14, 2011

Happy Birthday 5th Addyson!! Today was going to be a busy but a very exciting day for Addyson. We started out at breakfast where they sang Happy birthday to her and gave her a special waffle! Then Addyson went to the Boutique to get her all dressed up liked Cinderella. She was so beautiful! she loved it. Then we headed to Magic Kingdom to meet Cinderella in a private VIP room. The fairy Godmother was there too! They were so sweet, they gave Addyson a bottom that said "We love you, from Cinderella and the Fairy Godmother! Wish granted!" And the fairly Godmother gave your a lot of fairy dust to put in her room! It was a great experience for Addyson. Then Addyson wanted to go back to Hollywood studios. Of course we did and we straight to the Tower of Terror. Addyson had a goal to ride it 25 times! So we started and soon we got to know the employees and they learned of Addyson goal. The park closed to the general public at 7pm. Addyson was only on 18 at the point. One of the employees named Amanda was amazing! Her and Addyson really hit it off! She talked with her Manager and she got us to stay after 7pm to finish Addyson's goal!!! Amanda is so sweet and I don't think she will ever understand what that meant to Addyson! She made Addyson's make-a-Wish trip unbelievable and I could never repay her for that!!! She did give us her email, so we will be able to stay in contact with her! yay!!

We took pictures of Addyson before each ride. this was ride number 22!! lol We finally got back to the Village around 9pm. Addyson fell asleep on the way home , she was exhausted!

Feb. 15, 2011

Addyson wanted to go ride Tower of Terror a few more times and some of the other rides. So we went back to Hollywood studios and rode it just 3 times today! Mommy and Daddy were getting tired of it..lol Addyson wasn't feeling the best so we went back to the village and she took a great nap. Then we got up and went to Epcot for a few hours. Then back to the Village to pack up.

Feb. 16th, 2011

It was sad leaving the Village, as they were amazing there!!! But we were ready to come home and get some rest..lol

Thank you Mom for watching Kyler and Kaylee! And thank you Travis and Brooke for watching them Saturday night. You all really are the greatest and I would be lost with you all in my life!!!

Addyson update

Things seem to be going great with Addyson. She seems to be more active and hasn't been complaining about her legs hurting. She has started Gymnastics again and is doing great. She also just had her first Karate lesson this past Wednesday. She loved it! Anything to help strengthen and keep those muscles strong. Addyson is also started to eat more and even has gained a little weight back. Which we are happy she was getting too skinny. We will lower her MTX in around her birthday to .2. I am hoping and praying everything stays on this path!

Addyson will be getting her wish from Make-a-Wish in a few weeks. We will be going to Walt Disney World and staying at Give Kids the World resort.

I think back to a year ago and how things were horrible with Addyson. She had gained a lot of weight because of the steroids and how her disease was pretty much taking her over. And how now she is beating this disease! Praying she continues to fight and win this battle!!!