Monday, March 29, 2010

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!

Friday, March 26, 2010

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.

Friday, March 19, 2010

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.

Thursday, March 18, 2010

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!

Tuesday, March 16, 2010

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.

Tuesday, March 9, 2010

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!!

Monday, March 8, 2010

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!!!

Thursday, March 4, 2010

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!

Monday, March 1, 2010


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!!