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!