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!