Great News

We met with Dr. Jarvis and he thinks Addyson is just having growing pains.. He did draw blood and everything is still looking great!! So in Feb. we will lower her MTX to .2 if she is still feeling good! We won't go back for 4 months and when we do he will probably taker her off MTX all together! yay! We will start to lower her other meds one by one after that!! Woohoo. If all goes well she will hopefully be off all meds by the time she starts school!

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.

Chicago and MRI!!

We arrived in Chicago around noon on Sunday, December 5. It was very cold around 22 degrees and with their wind the news said it felt like -6 degrees. BRRR. So we only left to eat dinner!! On Monday we had to be at the outpatient clinic at 8am for Addyson MRI. Addyson was not happy about getting an IV! They had to poke her twice and she screamed! It breaks my heart!!! They got to her sleep and back in the room around 8:45. Well 9:45 past and then 10:15 pasted. We were starting to get worried. So Matt went to find out what was going on. Addyson was fine but for some reason that did an extra test on her leg. So she was under for 2 hours. It took her awhile to wake up and when she did, she was in another world...lol The good news is while she was asleep they took blood through the IV. So no more needles the rest of the trip!! She pretty much acted Drunk as Matt puts it. It didn't wear off of her until around 7pm that evening. so we spent the whole day in the hotel with her while she slept. We were suppose to see Dr. Pachman at Noon but because her MRI ran so late, they moved our appointment to Tuesday morning.

On December 7, we met with Dr. Pachman. She already had the results from the MRI and everything looked normal. Some of the blood work came back as well and it was normal. All great news! Dr. Pachman does think Addyson is developing Arthritis though. Which is not a good thing. Horrible thing in fact. One more thing in her life that she doesn't need! More medicine and at times can be very painful for Addyson!! I am suppose to call Dr. Pachman on Monday to get the rest of the results and the plan for what is going to happen next. She was going to get all of our medical records from Children's ER and Dr. Jarvis and then call Dr. Jarvis. So I guess we will find out more on Monday.

Later this day we went down to Navy Pier to get Addyson's sister Kaylee some Penguins that she fell in love with. We wanted extras in case we lost her penguin in the future! lol

The next day we flew home! Ready to be home and way from that cold weather!!!

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!

October 14, 2010

Well after speaking with Dr. Jarvis about Addyson. He wanted to see her ASAP. So Thursday, we went up to Children's Hospital. She received a treatment and also they took blood. Dr. Jarvis also came to see her during her Treatment. Dr. Jarvis wasn't even at the offices that day he came from the lab. I am lucky to have such a doctor that cares for his patients. He said he would call us after he got the blood results to see what the next step will be. I will update once I get that phone call.

Walt Disney World

Matt and I took Addyson along with my mom to Walt Disney World. Addyson had an unbelievable time. She got to get all dressed up like Cinderella., rode a ton of rides. Her favorite was Tower of Terror!! She didn't want to walk most of the time there. So that has me concerned. She isn't eating very well either. I am going to call Dr. Jarvis on Monday and see about them drawing blood and checking everything out. It could just be Addyson being lazy but something tells me is this stupid disease trying to creep back in our lives. I will let you know

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.

Surgery

Well Addyson got her Port removed on Monday. Everything we great. The surgery only lasted about 30 minutes! But it was a whole day event. You just have to love hospitals. Well After 4 surgeries for a pointless Port. I hope she never has to get another one. Overall she is doing good. She is a little sore but she is still very active. We took off her bandage and you would have thought we were killing her. I think that was the worst part. lol Addyson has a heart of gold and if you ever are around Addyson you would have thought she was just a normal child. Not fighting a life threatening disease. We learned just a few days ago that a boy died of this disease. It makes you so thankful for the little things!!!

Chicago August 15-18th

We just got back from Chicago. It was a nice trip but very glad to be home. We won't get the blood results back for a couple of weeks but overall Addyson seems to be doing good at this time. If everything stays good by the time we come back to Chicago in 3 months, we will be done with treatments and Dr. Pachman will start to lower the dosage on her medications. Yay!!! Hopefully we will stay on this path! I will write again once I have all the results!

Addyson will have her Port removed on Monday. We have to be at the Hospital at 8am. She is actually ready to get it out! I don't blame her at all.

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!

Branson Trip

Addyson and my mom went up to Branson for a week. They left last Saturday. Matt and I and the other two kids left Tuesday to Branson and Came back Friday. Addyson is back in town now but is still with my mom...lol She would rather be with my mom then home. But who wouldn't rather be with their grandparents. Addyson had a blast in Branson. She got to ride the ducks, drive on a race track, swim a lot and shop. Luckily this resort had an indoor pool. It was very Hot and we could see her cheeks starting to show signs of her rash again. But over all she had fun!

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.

Monday, May 17, 2010

Okay we got the results back from Chicago a couple of weeks ago and they said everything is looking good and just keep everything the way it is. There is just one number that is elevated but since everything is in the normal range at this point we are not going to be concerned about it.

Today Addyson had a treatment and the port worked great! I am glad we have this figured out now. It has made a big difference in how Addyson handles these days. We also saw Dr. Jarvis, who said Addyson is doing very well and we are going to have Addyson go every 3 weeks for treatments. Yay!! I love hearing good news.

We are going to schedule an appointment for Addyson to talk to someone. Matt and I have noticed that she has alot of anger inside of her. My guess it is from all the problems with the port, the three surgeries and not understanding why people have to do this her. We thought it would be better to have this checked out now then later in life!! I will let you know how it goes.

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!

Chicago visit

Well first off Addyson got a beautiful blanket made by Project Linus. She loves it and takes it every where. She took it to Chicago and takes it during her treatments!! Thank you Mark Sexton and his wife for making that happen!!!

Our flight to Chicago was at 7:30 am on Sunday April 25, 2010. So it was an early morning. We had to be up at 5am. Yuck! We arrived in Chicago around 10:30am and after taking the subway to our Hotel ( Thank you Erin Reynolds) we got there around 12pm. This hotel was right in the middle of a big shopping area. Not my kind of shopping. Very expensive shopping but it was nice to go walk around. It was beautiful there. Then we went to eat and then back to the hotel. There was a pool and Addyson wanted to swim. Then off to bed!

Next morning we got up around 6:30am and went and ate breakfast and then back to the subway and headed to Children's Hospital. We tricked Addyson to get there. She thought we were going to the American Girl store. She knew as soon as she saw the building and started asking about her Port. If they were going to poke her. Poor thing! We went and met with Dr. Pachman, the physical therapist and a dermatologist. Dr. Pachman said her rash looks better but b/c the last blood draw had higher results. We will have to wait and see how today's turn out to figure out the next plan of action. The ladies in physical therapy came in and this time addyson did what they wanted and passed with flying colors. I knew she would. Then we went down and they measured how much fat she had in different parts of her body. Then the bad part, we went down to get blood taken. We asked Addyson if she wanted to use her port of vein. She said vein. So that is what we used. The people there in Chicago are amazing at taking blood. He was so quick at it, I don't think she even felt it. I believe they took 7 viles of blood. Now is just the waiting game!

At the hospital we ran into the Carpenters with their daughter Kya who also has JDM. They are also in Oklahoma. They were the first contacts I had when all this began not to long ago. It was so nice to finally meet them. They were very sweet. Matt and I owe that family alot. They helped us get together with Dr. Jarvis and Dr. Pachman!

Addyson wanted a cheeseburger, so we got her a cheeseburger and headed to the American Girl store. Not really sure why she wanted to go there. She isn't really into dolls. she didn't last long in there...lol We then went back to the hotel took alittle nap. Addyson has also been sick this whole trip with a running nose and a bad cough. Then we got up and ate dinner and then went swimming. What Addyson wants she gets..lol

Off to bed, we at least get to sleep in. Got up around 8:45am. Went and ate breakfast and then went swimming and then got our bags and headed back to the airport. Got to the airport and ate lunch and then waited for the plane. Actually ran into a friend of ours at the airport that was on the same flight. He came from another state but was headed home as well. landed in OKC around 5:40pm and was home around 7pm. We had to stop and pick up Addyson's brother and sister. It was a short trip and always glad to be home. As soon as I know the results in two weeks I will keep you updated!!

April 20. 2010

Addyson had a treatment today. And guess what?? The port worked! Matt actually took he today and they figured out something by mistake. When she looks down at her port, somehow her port is getting tangled up. When she looks away, I guess it straightens out and works. Yay!!! It is better than nothing at this point. It takes 3 or 4 people to hold her down each week. Next time she has a treatment they are going to at least give her something to calm her down ahead of time. Hopefully it works.

We leave for Chicago on Sunday!

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!

Oh What a day!

Last night Addyson woke up not feeling good at all in the middle of the night. Today she was having cold chills and running temp. So I took her to see her regular doctor (Dr. Vincent). Because of all the medicine she is on, he wanted to get her white blood cell count and get an xray to make sure the Port wasn't infected. So we went over to Mercy Hospital and they had to call around to find someone that knew how to access a port. They finally found someone after an hour. Seriously are there not patients in this hospital that have ports?? Then when they tried to access the port, Guess what? Yep you guess it, it didn't work!!! So they tried it twice and finally I said please just use her arm. She was hysterical! No wonder Addyson wants nothing to do with doctors and nurses. I wouldn't either if I was her. So they finally got some blood from her arm. Yay. Then down to x-ray. Luckily that was not as long as the two and half hours that took to get her blood drawn. So now we just have to wait for the results. We were told if her white blood cells were too low they would have to admit her. Just want we wanted was her in the hospital around sick people.
Thankfully around 5:30, Dr. Vincent called me and told me everything came back fine. So no hospital. Yay!! But she did say Addyson had a urinary Tract Infection. She wasn't complaining at all about this. So he and I were both surprised but at least we can get it under control now. So Dr. Vincent called in the prescription. I went to go pick it up at Walgreens. And by know this pharmacist knows us well and is always asking about her. Anyways he asked if I checked with Dr. Jarvis about this medication. And I said "NO" and he said " you may want to". So I called Dr. Jarvis and he said "absolutely not". I guess those two medicines would be very bad together. So now I had to get ahold of Dr. Vincent after hours to get her on something else. Well its 8:24pm and finally something that she can have is being called in. Oh what a long and stressful day.
Now on Monday, We are going to worry about her Port. I am just praying Mercy didn't know how to handle a port and that Mavia will get it to work. Because I am not putting Addyson back under to first the port for the fourth time. Just not happening. I guess we will wait and see what happens on Monday.

OFF Prednisone

Well today Addyson took her last pill of Prednisone. We have been tapering it away for a month now. We can already tell she is starting to lose a little weight. And now that she is completely off of it I think it will drop off of her. She has even been happier lately. They wanted to get her off this medicine because she was gaining so much and they didn't want her to get stretch marks. We will skip a treatment this week just because the doctors are gone this week. But we will continue on our weekly treatments the following week. At least Addyson gets a week off!!! We haven't received her blood work results yet, I am curious what they are since we have been tapering this medicine.

Sick kiddos

Well I took the three kids to the doctor today because it has been a week since they got this cold stuff going on. Thankfully my mom came with me to the doctor. There is no way I could handle 3 sick kids because they all want to be held. Well the doctor said Addyson has an ear infection and a cold, Kaylee has an ear infection and a cold and poor Kyler has two ear infections, pink eye and a really bad cold. And I wonder why they haven't been sleeping at night! Atleast they are on medicine getting better now.

March 17, 2009

Today Addyson had a treatment done. THANKFULLY it worked. Three surgeries later, but hey all that matters now is that it continues to work from here on out. Addyson didn't even feel the needle either. She did throw a fit in the beginning but she is so use to getting stuck 3 or 4 times. But only once today! Yay. In fact she was more upset about getting the tape off her skin that held the IV. She is such a brave and strong little girl. I am so proud to call her our daughter!!!! I just know her littler brother and sister are going to look up to her.

She still isn't feeling the best. Coughing and running nose along with the rest of the family!

Addyson sick

Addyson has ben sick since Thursday. Today she has been coughing really bad. But the rest of the family is sick as well. I just hope she can get over this quickly. Addyson has a treatment tomorrow and I am praying that her port works.

3rd times the charm!!!

Well we had Addyson at the Hospital at 6:30am. They had her back in the surgery room at 7:45am. The surgeon switched out the port and out a bigger one in. Hoping and praying this works next week when we have another treatment. The surgery lasted about an hour and they said she did great. It took her alittle longer to really wake up because they gave her additional pain meds. We got home around 11:15am. She is hurting and is just really tired. So today will be a day to just relax and take it easy!!

2nd Surgery for Port

Well today was a very long day. We had to be at the hospital at 7:30am. They didn't take her back for surgery until a little after 9:30am. During the surgery the doctor called us in the waiting room and said he got the port to work with out having to open her up. We thought that is great!!! So after she went to the two recovery rooms, we went up to Dr. Jarvis's office to have a treatment done. This is where the nightmare began. The stupid port didn't work!! Atleast not right. So we went and go the surgeon and had him come up to talk to Mavia(the nurse) about what was going on. He decided it was best to put a bigger Port in. So that's right!!! Addyson will be going back into surgery tomorrow morning at 7:45am. We have to be there at 6:30 in the morning. Hoping and praying this is the finally procedure for awhile. I am not sure how much more of all this Addyson can take!!!

Another surgery :-(

Well today Addyson port was accessed to get blood from and once again it didn't work. So we met immediately with the surgeon that put the Port in. He told us this doesn't happen very often at all. But that he will have to go in and remove this one and put in another port. It may even be on the other side of her chest. Which mean another scar. She was extremly upset while they were trying to get her port to work. They even tried her veins and they just blew. So she has to have this Port but its getting so frustrating. Why can't this little girl get a break!! So we don't know the time yet but after 4 hours at the Hospital, we know it will be on Monday. The surgeon knows she has to have blood draws and treatments, so he is working her in on Monday!

GREAT NEWS TODAY!!!

Well we got a letter in the mail from Dr. O'Neil and Addyson bloodwork from February 24, all back in the normal range!!! Yay! It has been awhile since we have heard something good, so it is nice for a change. Now We have heard this before but we will just hope and pray it stays this way this time! Well we are tappering the Predisone slowly. She should be completely off of it by the end of this month if all goes as planned!!

Very long treatment day!!!

Today was a very long day. It was just suppose to be just a normal treatment day and an appointment with Dr. Jarvis. Oh was I so wrong. Addyson's appointment was at 9am for the treatment and 10am to see Dr. Jarvis. We got back to the treatment and got all set up. Addyson was calm because last week the port worked perfect. She laid down and Mavia (the best nurse ever) got the needle in the port. She couldn't get it to work right. So Kim tried and Linda. and after re sticking Addyson 4 times, they sent us down to x-rays. Might I add Addyson was screaming and kicking for them to stop poking her.
Something just wasn't right with the Port. They told us to not let Addyson have anything to drink or eat in case they have to go back into surgery to fix the port. Well after x-rays, the port had a kink in it and possible a clot. Mavia got it to work at least for a little bit for Addyson's treatment. Hopefully by next week, the kink will not be there and we will not have any problems. Lets just say it was along day(5 and half hours at the hospital) for Addyson and I am glad we are home and she didn't have to go back into surgery(at least for now anyways).

Visit with Dr. O'Neil

Addyson was feeling good today either. We took her to see Dr. O'Neil. She said Addyson probably passed out b/c of a combination of the sleeping medicine from the surgery and the pain medicine she is on. Everything seems fine for her. Dr. O'Neil did go ahead and have Addyson get another treatment while we were there. They used the port for the first time. It was little sore but overall it was MUCH easier than using the arm. Matt and I are so happy that we got the port for Addyson. She didn't even cry when they pulled it out. Mavia is the nurse and she is so good with Addyson. We are going to lower the Presidone back to 10mg a day. The Cellcept should be getting into her system. If we can just get off the Presidone, Addyson will start losing her weight. That is Dr. O'Neil's main goal right now. Her blood levels are looking okay. We will watch them as we tapper the Presidone!! Everyone told us this would be a rollarcoaster ride with some up's and alot of down's. They were right!! Matt and I are just ready to have our happy go lucky little girl back. She will have another treatment on Monday. Hopefully it will go as smoothly as today's!!

Not feeling the best

Addyson isn't feeling the best today at all. She has been in Matt's and I's bed all day watching movies. She has looked very pale all day. She even passed out for a very short time. I called Matt and he got home very quickly. Her temp was 99 degrees. So we are going to watch her for alittle bit and if she continues to go down hill. We will take her back to the hospital. Right now she is asleep on the couch. She is complaining that her chest is hurting but that is expected. I guess we will just wait and see.

Recovery

Addyson was a little more sore today. But overall doing very well. Nana and Papa came over today to see how Addyson was doing. And unless you knew she had surgery you couldn't tell. She was hyper as ever! She is a such a trooper and fighter. Katie and Randi both texted me to find out how she was doing. She has so many loving and caring family and friends. We are so lucky to have all their support and prayers!!

Addyson also had a doctors appointment today. The doctor and I have decided to hold off on vaccines until things are better with Addyson. He doesn't want her to get shots and be poked unless she has to be. Since she has weekly treatments and blood draws. Right now is not a good time for vaccines. She can't have live virus shots anyways. So we are holding of for a while. Addyson has been complaining about pain in her left leg. So he checked it and told me to tell Dr. Jarvis. I am afraid that this may be the beginning of having pain in her muscles. I guess we will see! Overall Addyson appointment went well. She is 45% for height and 95% in weight. The medication doesn't allow them to grow and makes them gave alot of weight. This time last year Addyson was 25% in weight. I will take whatever weight gain she gets if it will make her get to remission!!! Once she gets off the steroids she will lose the weight and grow rather quickly!

Surgery Time!!

Addyson had surgery today. She was getting a port. We got at the hospital around 7:45am. We went to a room where she got to wear animal pajamas. While we were waiting in the room, Addyson called Nana and talked with her. She loves her Nana and Papa so much! Nana stayed home with Kaylee and Kyler so Matt and I could be at the hospital. Thanks mom!Around 9am Katie showed up and Addyson was so excited to see her. Katie brought crayons and a Tinkerbell book for Addyson to color in. And Addyson climbed up in Katie's lap and colored! It was cute! Then it was time for the operation to begin. They let me walk her back to the operating room and I held her until she was asleep and then I laid her on the table! It broke my heart to see her so limp and her eyes in the back of her head. But I knew she was in good hands. The doctors were very nice! The operation started alittle before 10am and she was done around 10:35am. She did great. When we went to the recovery room she was awake and just kind of out of it. She had a grape Popsicle. She stayed there maybe 15-20 minutes and then we went to another room. Where she got another grape Popsicle. And she wanted Katie. Not mommy and daddy! lol So Matt went and got Katie and we stayed there in the room for about 20 minutes. They took out her IV which that was the worst part. They had put glue under the tape and it was stuck on her hand. That was the only time she got upset. But i would have too! Then we got to leave. Addyson wanted a cheeseburger so we got her one. I think she took two bites out of it. She really wasn't hurting much. She was playing with her brother and sister. She wanted to go to the mall so we took her to the mall and just walked around for an hour. She sat in the stroller. We came home and Randi came over to see Addyson. Randi brought her a bear. It is red and she named it "HUGGY". It hasn't left her side since she got it. Randi played with Addyson. Addyson is so lucky to have Katie and Randi in her life. Those two girls are the best and would do anything for her. Besides Addyson would rather be with them or Nana and Papa than mommy and daddy.lol

Addyson's Birthday Party

Today was Addyson's Birthday! I can't believe she is 4 years old! She woke up and wanted a donut. So I went and got her one. And for lunch she want a cheeseburger so I went to McDonald's. Then my mom and I took Addyson to the mall while Matt stayed at home with Kyler and Kaylee to decorate for Addyson's Birthday. She had a Wizard of Oz theme! My mom made an amazing cake Wizard of Oz! The party was great, we had pizza and cake. Nana, Papa, Uncle Travis and Aunt Brooke, Katie, Isabella, Randi, Kyler, Kaylee and of course Matt and I. Addyson got way to many presents and is having so much fun playing with them all. It was a great day for Addyson!!!

Surgery Time scheduled!

Well we got Addyson's Surgery time. It will be Monday morning at 10:55. They said it could start any time between 10 and 11am. We have to be at the Hospital at 8am. ugh!

New Medicine-Cellcept

I picked up Addyson's new medication today. It is call Cellcupt. This medication will really suppress her immune system. So we will have to be careful and not have her around a lot of people as much as possible. But I won't keep her trapped inside our house either. It's just not fair to her. So she is on a total of 6 different medicines and vitamins. It's crazy. I have to keep a calender so I know which ones to give her each day. Cellcupt will take a copy of months to really get into her system. Once it does and every thing is looking okay, they are hopefully going to start lower her Predisone. Which that is the medicine that is making her gain a lot of weight and have mood swings and not grow. I think once she is off that. I think she will be a happy little girl and maybe back to her old self!

Meeting for surgery

Today Matt and I took Addyson to Children's Hospital to meet with the Anesthesiologist and talk about the procedure. The nurse was really nice. She just went over Addyson's Medical record and over the medications she is currently on. Then the Anesthesiologist came in and listened to her heart and told us and talked to Addyson in kids language about what was going to happen. It was so cute. Addyson has been talking about it all day. She is excited because she gets to choice the flavor of her sleeping medication that she will breath to go to sleep. I get to be with her until she goes to sleep and then after she wakes up she knows to ask for mommy and daddy. She is such a brave and strong little girl!! We love her so much!!!

Dr. Pachman Treatment plan

Dr. Pachman called us this morning with the results of all Addyson test that she did up in Chicago. Addyson blood work came back okay except for one thing. And of course it was the test that showed if the disease was still active and attacking it self. And came back high. Along with that and Addyson's muscle weakness, she came up with a new treatment plan. We are going to up Addyson's Presidone Medication and go back to weekly IV treatments. We are adding a new medication called Cellcept. It takes a couple of months for that to get into her system. She is hoping that in April when we go back to Chicago we will be able to start Tapering away the Presidone. If we can do that, Addyson will start to lose the weight and start growing again. I thinks she would be a happy girl then!!

Addyson's youtube video

Matt and I made a video for Addyson. Here is the link so you can view if you would like.

http://www.youtube.com/watch?v=4H6fnrGmJ2o

February 1, 2010

I am a little behind in writing this one. Addyson had another treatment on Monday February 1st. We met with Dr. Jarvis and had another IV treatment. The nurses had some trouble getting a good vein. So after talking with Dr. Jarvis and some other parents with sick children, we have decided to put a port in Addyson. She will have the surgery on Feb. 15, 2010. I knows its a easy procedure but I have to admit it scares Matt and I to put her under. But i know its the best idea for her. Matt took her to the dentist yesterday and the minute she saw the nurse she started crying and crawling up in his lap. She is terrified of Doctors and nurses now. Which I don't blame her. She doesn't understand what is going on.

Also for the past three times we have taken Addyson to Gymnastics. She has quit 20 minutes into the hour long session. Then she usually comes home and take a nap. The disease seems to be taking a toll on Addyson regarding her muscles. We push her around the mall in a stroller and she just doesn't seem to be as active as she use to be. I know its the steroids but she is extremely emotional. She will be laughing one minute and crying and throwing a fit the next. And any one who knew Addyson before, knows Addyson was a very sweet and quiet little girl.

Dr. Pachman in Chicago will call us tomorrow evening regarding Addyson blood work and test that she took up in Chicago. She will tell us the plan of Treatment for Addyson. Hopefully it will help Addyson get to Remission.

I can't thank my family and friends enough for all the help and support they have given Matt and I during this difficult time. My Keller Williams family have been amazing and I am so proud to work for Keller Williams. And my mom for watching Kyler and Kaylee, during Addyson's treatments and trips to Chicago! Thanks Mom!

Chicago jan 24-26

Well we just got back from Chicago tonight. I will tell you about our short trip. We left OKC at 12:40pm and landed at 2:45. Addyson had a blast on the plane and was making everyone laugh. Her personality is so funny. We then took the train ride and walked about a 1 mile and a half to our hotel. We didn't know it was that far or we would have taken a taxi. Addyson walked the entire way while pulling her little suitcase and never complained. Might I add it was 36 degrees outside. We got settled in and then walked down to a burger place called "five guys". It was so good!! Then went back to the hotel where Addyson and I colored and ate some junk food. The headed to bed!

We got up around 6:45 and went to the hotel lobby to eat breakfast. Then back to our rooms to get ready. We got all bundled up because it was 23 degrees outside and snowing. Luckily the hospital was only a few blocks away. We got there at 8:30am and they got started right away. They took pictures of fingers and where it showed ALOT of muscles damaged. Then physical Therapy came in to find out what she can and can't do. She got a score of 32 out of 50. Not very good at all. She wasn't in the mood to be playing their games either. But i don't blame her. She knows every time she goes to a doctor they poke her. Then Dr. Pachman came in and examined Addyson and spoke with us about what was going on and what she things. She is the best in the disease and has 200 patients under her care with this disease. She only deals with JDM. She knows what she is talking about. She didn't give us good news. Addyson has alot of muscle damaged. More than what we thought. She is going to get alot more aggressive with treatments and dosages of meds. She is going to work with the doctors here in OKC. We will travel back up to Chicago in 3 months. Then we went to the basement of hospital to have blood drawn. They took 10 viles!! Cory was amazing at taking Blood. I wish she was here in OKC! Addyson still didn't like it but she was so fast at it!! She gave Addyson some apple juice and a gift certificate to McDonalds. She was great!!! So we went to eat at McDonalds at the hospital then headed back to the hotel. Addyson wasn't feeling very good at all. So we all took a nap! After we woke up went to go eat and stayed in the hotel after that to go to bed early.

The next day( Tuesday) we went to the Shedd's Aquiruim to see all the fishes. Addyson had a blast. It was a free day there so even better! We stayed there for a couple of hours and then headed to the airport. Our flight wasn't suppose to be until 6:50 but they got us on 2:20 flight home. So it was nice to be home early. Addyson missed her brother and sister and nana and papa!

Overall it was a very disappointing trip. We were hoping for good news and got the opposite. But Addyson has to be treated aggressively or she will never beat this disease. So I am glad we met with Dr. Pachman so she can get the right treatment started. We will find out the results of Addyson's bloodwork on Feb 5. Addyson's next appointment is April 26 with Dr. Pachman!

6th Treatment

Addyson had her 6th Treatment today. They had to poke her a few times to get a good IV going. She didn't like that too much. Nana was there today, so she made it all better. During the infusion, Addyson watched UP and had to color with her left hand. Her IV was in her right hand this time. The hour went quick and of course on the way home we got Addyson a cheeseburger. She is such a brave little girl! We are heading to Chicago in two days to meet with Dr. Pachman.

Bouncin" Craze

We took Addyson to a place called Bouncin' Craze today along with her brother and sister and Nana. Its a place where they have big blow ups that the kids can bounce and climb and slide down on. Addyson made Nana go with her everywhere and made Nana tired!! lol It was great for her muscles and she did it for a whole hour!! Her brother Kyler had a blast too. Matt and I had to carry him up the slides. And I wonder why I am so sore now. I took Kaylee(4 months old) down a slide too, but didn't get much of an expression. Well it was a blast and the kids did too!!

5th Treatment

Addyson had two weeks off of getting treatments. But it was back to reality yesterday. Today she met with Dr. O'Neil (she had been out of the country for some time and was back). She said Addyson was doing well and she could tell where swelling in her hand had been but now is gone. Addyson's bloodwork came back good. There was only a couple items that came back high. But its a start. They lowered her dosage on her medicine and she will only have IVIG treatments every other week now. Addyson doesn't like getting stuck with needles so this is a blessing.

We will be leaving January 24 to Chicago to see Dr. Pachman at Children's Memorial. She is the best is this disease. We will be returning Jan 26th! I will let you know how it goes!

Thank you to everyone for all the prayers!!!