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!!!

Update on labs

Dr. Pachman called me the other night and said Addyson labs look great! So she would like to stop treatments and then check blood in a couple of months. But great news!!! She wants us to talk to Dr. Jarvis about Addyson's Arthritis. He specializes in Arthritis and knows a lot more about it. We see him on Monday and will know more then. Addyson has really been hurting in her right leg. My mom has put a heating pad on her leg and she said it helps a little. Hopefully we will get some answers regarding her leg soon.

MRI

We will be leaving for Chicago on Sunday but we found out Addyson will be having an MRI and she will be put to sleep while they do the MRI. I guess the test is 45 mins and the machine is loud and they need her to lay very still. I never like it when they have to put her to sleep but I understand why they have to too! Hopefully we will finally get some answers regarding her leg. Addyson has been running a fever for the past few days. I am thinking she is getting a cold. I hope she can get over it before we get on a plane! She has also been extremely tired lately.

One year Anniversary

Wow! I can't believe it has been a year since Addyson was diagnosed with JDM. She has been through so much in a course of a year and I don't see anything letting up anytime soon. I am trying to stay positive though. I know Addyson will be one of the lucky ones that makes it to Remission, it just won't be as soon as I had hoped! I know God has a plan for this little girl. She is so strong and has so much courage.

Most Kids Addyson's age are playing with dolls. But not Addyson, she wants to take turns playing with her IV bear. She pretends to give me an IV and treatment and then I pretend to give her one. Don't get me wrong I am so happy who ever came up with Baxter the IV Bear. I think it helps Addyson. But it just gets to me knowing that my beautiful little girl, is even having to worry about getting Treatments and blood drawls!

Addyson has been complaining a lot about her right leg hurting. She limps and won't use that leg going up and down stairs. Addyson hasn't had to worry much about the muscle weakness but I think it catching up with her now. We go to Chicago on Dec. 5, 2010 and I am ready to go so I can talk to the doctor. She still doesn't have all her energy back and hasn't for some time.

I have decided as of the first of the year to get out of Real estate for awhile. Matt and I agreed that with all the treatments, doctor appointments, Chicago trips that it is best. I was spending more money keeping my license then what I was making. Once Addyson is better and hopefully in Remission, I will come back. Luckily I have a dad, that completely understand! Since My dad and I were a Team in Real Estate, it was good to know he didn't have a problem with me leaving for a while.

Results

Addyson's blood work did go back normal. Which is a good thing but on the other hand it doesn't answer my questions. She is still barely eating and has no energy. Dr. Jarvis took her off Meth. from a couple of weeks. He thinks it may be to strong for her. So after two weeks we will start it up again. We found out we will be going to Chicago On December 5, 2010. Which I am looking forward to so i can talk to Dr. Pachman about what is going on!

ER visit #2

So Saturday Addyson woke up feeling worse and still running temp and throwing up. She couldn't keep the medicine down and was very tired. We called the doctor and he sad to take her to Children's ER. So we were there for 7 hours again. But they got her fever down, gave her fluids and gave her a bunch of antibiotics to kick the Pneumona in the butt..lol They were going to admit her but because of her disease they didn't want her around more sick kids with her immune system being so low. Which I am glad! I would rather have her at home! And the medicine worked. She started feeling much better on Sunday! Which is good because we leave for Walt Disney World on the Sept. 28th!

Pneumonia

Addyson start coughing on Thursday. So we took her back to the doctor on friday. Where they did an x-ray and we found out she had Pneumonia. Atleast I know what is wrong and we can get her on Medicine to make her feel better! Yeah!

hospital

Well Addyson has been complaining about a headache and has had fever since Thursday. I took her to the Mercy's ER last night where they ran a whole bunch of test. Everything came back normal. They gave her fluids but couldn't get her temp down. They finally released her at 3am this morning and told me to go to Children's ER. The doctor said he doesn't know enough about this disease. I took her home and called Dr. Jarvis in the morning. He told me to go to our regular doctor. Which i did. and he said this is just going around. I didn't like that answer. I will wait a couple of days and if her fever and headache is not gone i guess i will take her to Children's ER.

Treatment and appt and sugrery appt

Addyson had a treatment yesterday. She did very well. She wanted the IV in her arm so before we left the house I put magic cream on her. It helps to numb the skin, so it doesn't hurt so much. She also got to see Dr. Jarvis today. Dr. Jarvis said she was doing well and her blood levels are looking good right now. So Addyson will now have treatments every 4 weeks. yeah!!! All the meds are going to stay the same right now. But I will take anything. Its one step closer to remission. We leave Sunday for Chicago, so hoping Dr. Pachman feels the same way about Addyson!! I will post an update when we get back!

Addyson will also be having surgery on August 23, 2010 to remove the port. We don't use it and half the time it doesn't work anyways. Besides we have been using her arm lately. So hopefully she will never have to have another Port put in.

Miracle Flights

Matt and I have been using Miracle Flights to help pay for the flights to and from Chicago. Flights are not cheap anymore. They have recently added Addyson onto their website. Here is the link. http://www.miracleflights.org/stories/index.php?state=Oklahoma.

Because of the economy, they are unable to fly both adults and child to Chicago. They are only able to fly one parent with the child. But I can't complain. Atleast they are still helping!!

I never dreamed I would see my child on a website like this. But I am very thankful something like this is out there for kids they need to be treated in another state or country!!

Treatment and fun

We got Addyson's Bloodwork back and it all came back normal!! Yeah!!! They are going to leave everything how it is for now to make sure it stays that way. Addyson had a treatment yesterday. She didn't want them to use her Port so they used her arm. I guess because it hasn't been used in awhile that it worked with no problems. Addyson is so brave!!

Afterwards, We went home and got the rest of the kids and went out to my in-laws. Addyson got to swim with her cousins and had a blast!! Matt had to go to work, so Addyson stayed and swam and played with girls. My mother in law said Addyson ate a ton!!! Which is great because she has been eating like a chicken lately! lol She obviously had fun because Addyson was asleep in Matt's car in no time!! lol

Addyson woke up today and I asked her what she wanted for breakfast. She said chicken and rice. That is what she had for dinner last night. It made me laugh!!!

Matt and I will travel to Chicago with her August 15, 2010. Her appointment is in the 16th at 9am!

Recent pictures!

Well While we are waiting for the bloodwork. I will post a few pictures of Addyson and her siblings. Addyson has lost so much wait since Easter. She looks pretty much back to the way she use to before all those meds!!Addyson - 4 years old

Kyler 2 years old

Kaylee 9 months old

Addyson blooddraw

Well today I got call from a nurse at Dr. Pachman's office in Chicago. Because Addyson blood levels are still elevated, they want to do another blood draw. And depending on the results, well depend on what the next step to do will be. Overall not the greatest news! But we all know how this disease works. Its a roller coaster ride!! I will keep you updated after I get the results.

Dr. Jarvis Appt and T-ball

We Met with Dr. Jarvis a couple of weeks ago. Her aldolase are still elevated. We made her Methotrexate from .4 to .5. As of right now she is still receiving this orally. Addyson will still be receiving treatments every three weeks as of right now. We will watch her levels and see what happens.

Well it has been a raining Summer her in Oklahoma. Addyson has yet to be able to play t-ball. For four weeks her games have been cancelled. The season has only 8 games...lol So who knows what they will do. Because its seems to rain every Sunday and Monday. Ugh!!!

Treatment and T-ball

Addyson had a treatment yesterday. We got the treatment in but when they were drawing blood the Port stopped working again. Not sure what is up with that Port but I can't wait until she can have that thing removed! Hopefully sooner rather than later!!! We will meet with Dr. Jarvis in 2 weeks and go over all her results.

Addyson also went and saw her therapist again. He is trying "tapping" on Addyson. It is suppose to be away for her to relax. I guess we will see if it works during the next treatment. But again so glad she went. She is beginning to talk to the therapist now!

The nurse from Children's Hospital called me today. Addyson whit blood cell count is low. They want to lower her Cellcept from .9 to .8 twice a day. the cellcept can do that so they are going to slowly tapper it! Yay! Overall everything is looking in the right direction!

Addyson started T-ball today. She was so excited! Today she met her team and practiced together. At first she was very shy and was crying with Matt. But after about 15 min she was okay. Her first game is Monday! I think she will do fine. The game is 8pm so at least i won't have to worry about the sun!!

Therapist

Matt took Addyson earlier this week to talk to a therapist. I am so glad we went! Everyone has been telling us its the medicine and it will go away once she is off everything. I just knew better! Only Dr. Pachman was the one that agreed with us that she should see one! Addyson has a lot of anxiety and alot of other stuff going on. But that little girl has been through alot lately! She is going to meet again with him next week.

Treatment

Addyson had a treatment today. And the Port worked again! Yay! As long as she turns that head it works great!! I really wish they would have figured that out before we had 3 surgeries though!! Which I am so happy. She still fights us to use the port but for a treatment we have too. Over all it was a a quick trip to the hospital and back (2 hours). Still waiting for the results from Chicago!

Update

Its been a while since I have updated on Addyson. Addyson started physical therapy a couple of weeks ago. She went twice and finally the girl said Addyson was passing all the test with flying colors. The were making her jump and walk. Well she can do that. Addyson just gets tired walking for long distances. But I think that will change later on.

Addyson had a rough night last night. She didn't sleep very well and was complaining about her ear. So I took her to an after care clinic and she has an ear infection in her left ear. So she is on more medication for that.

Matt and I will be taking Addyson to Chicago next weekend to see the specialist. Hopefully we get better feedback then last time we were hear. So good news for a change would be very nice!

Overall Addyson is doing okay. She has lost a lot of weight and is still very Active. I just signed her up for T-ball that starts in a few months. She is very excited!!!

Her next Treatment is Tuesday.

Treatment Day

Matt took Addyson up to Children's Hospital today for a treatment. Since she hasn't had one in two weeks. The Port of course wouldn't allow blood to be taken from it. So we had to use a vein. I refuse to port her through another surgery. So hopefully her veins will hold out atleast to get Blood taken. Addyson did okay. Her doctor wasn't there today so they couldn't give her the sedation medication to help her calm down. Ugh! She will not have a treatment for two weeks. Hopefully her levels stay good!!!

Matt took her to chuck e cheese after her treatment to have some fun. Atleast she got thirty minutes of being a normal kid again. One day hopefully she will off all these meds and treatments! Addyson is slimming down. It has been about 2 and half weeks since we have been off of Prednisone. She is starting to lose the weight and she is happy about it. You can tell! Addyson is finally over her cold. Her brother and sister still have it. But atleast only two are sick and not all five of us.

I give up!

Addyson had another appointment today to meet with Dr. Jarvis and to have a treatment done. We met with Dr. Jarvis first and he said her blood work has been very good for the past month. So we are going to treatments every other week now. That is a good thing! Then we went to see Mavia to do her treatment. And once again her Port didn't work. It also looked very swollen and red. So they think its infected. So because the port didn't work and because it's infected. No treatment. She is on more medicine to treat the infection. We are hoping that is the reason it hasn't been working. I really doubt it but I can hope. I am not putting Addyson back under. She is so traumatized by all this. Matt and I are so frustrated by everything. Addyson is such a sweet and outgoing girl and this whole thing has changed her. I miss the old Addyson! Addyson will go back next Wed to try again. She doesn't have a choice, she has to have these treatments!

Addyson will also start going to physical therapy twice a week to try to gain some of her muscle weakness back!