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Sunday, April 17, 2005
Wednesday, April 13, 2005
Disneyland and other things
I am sorry it has taken me so long to write after our Disney trip. I think my mom is right when she said that I am still living in the Disneyland glow! We really had a good time. Jacob has said that he now wants to live in Disneyland. He loved all of the fast rollercoaster type rides, he is such an adrenaline junky!! It was so fun to see him have such a good time. It took Kaelyn a couple of days to get used to all of the lights and sounds of the park, she was pretty overstimulated. But by the last day, she had a really good time. She really liked the "It's a Small World" ride and the "Dumbo's Flying Elephant" ride. It was a good vacation, but it was also a lot of work! We are glad to be home, though we loved the fun we had.
I want to thank everyone who was so kind and generous in sending us donations to help pay for our trip. We actually received enough funds that we had very little out of pocket expense. It was such a surprise when we started receiving all of your kind gifts in the mail and from Wade's co-workers. We were in a little bit of shock I think! Anything that is left over after paying for our trip is being put into an account that is designated only for Kaelyn's care and emergencies. You all have given us such a wonderful gift, not just the money, but the knowledge of how many people are out there who care about us and our Kaelyn's well-being. Thank you again! I wish I could thank everyone in person and give you all a great big hug.
I can't put any pictures up from our trip in this post, because we are in the hospital with Kaelyn. So I will put some up in a future post. Kaelyn was supposed to start her Chemotherapy on Monday of this week. But when we went in to start, her labs came back with an elevated white blood cell count so our Oncologist didn't want to start therapy, nor did I. The next morning, Kaelyn woke up with a fever and we brought her into the ER. She has an infection where in her bile ducts, most likely from the biliary tube. She has been on some good antibiotics and went in yesterday for a new tube to be placed and for them to look at her biliary system to make sure that there is no blockages. We were really nervous, because the last time we did a surgery like this was when she went into septic shock. Thankfully, she came back from surgery yesterday healthy and well. They were able to place a new drain, the old one had a blockage in it and her biliary system did not have any blockages. So, we are currently giving her IV antibiotics to make sure she will fully recover from her infection and will probably start her chemotherapy on Monday.
Thank you again for all of your love and support through this time. We honestly gain strength from your prayers and concern for us. I know you all want to feel like you are doing something to help. You are. Just keep praying and thinking of us and our children. We love you.
Love,
Angie
I want to thank everyone who was so kind and generous in sending us donations to help pay for our trip. We actually received enough funds that we had very little out of pocket expense. It was such a surprise when we started receiving all of your kind gifts in the mail and from Wade's co-workers. We were in a little bit of shock I think! Anything that is left over after paying for our trip is being put into an account that is designated only for Kaelyn's care and emergencies. You all have given us such a wonderful gift, not just the money, but the knowledge of how many people are out there who care about us and our Kaelyn's well-being. Thank you again! I wish I could thank everyone in person and give you all a great big hug.
I can't put any pictures up from our trip in this post, because we are in the hospital with Kaelyn. So I will put some up in a future post. Kaelyn was supposed to start her Chemotherapy on Monday of this week. But when we went in to start, her labs came back with an elevated white blood cell count so our Oncologist didn't want to start therapy, nor did I. The next morning, Kaelyn woke up with a fever and we brought her into the ER. She has an infection where in her bile ducts, most likely from the biliary tube. She has been on some good antibiotics and went in yesterday for a new tube to be placed and for them to look at her biliary system to make sure that there is no blockages. We were really nervous, because the last time we did a surgery like this was when she went into septic shock. Thankfully, she came back from surgery yesterday healthy and well. They were able to place a new drain, the old one had a blockage in it and her biliary system did not have any blockages. So, we are currently giving her IV antibiotics to make sure she will fully recover from her infection and will probably start her chemotherapy on Monday.
Thank you again for all of your love and support through this time. We honestly gain strength from your prayers and concern for us. I know you all want to feel like you are doing something to help. You are. Just keep praying and thinking of us and our children. We love you.
Love,
Angie
Wednesday, March 23, 2005
Kaelyn is home, and we are off to Disney!
Hi everyone!
We were able to take Kaelyn home yesterday. She is doing fine. She does have a bag on again for her bile to drain externally, but she is feeling much better. We are going in for an ultrasound tomorrow to see what is going on with her bile ducts.
We are going to Disneyland next week! We leave on Monday! We are all very excited, especially Jacob. I will make sure and take a lot of pictures and then I will post them here for you to see.
Love to you all!
Angie
We were able to take Kaelyn home yesterday. She is doing fine. She does have a bag on again for her bile to drain externally, but she is feeling much better. We are going in for an ultrasound tomorrow to see what is going on with her bile ducts.
We are going to Disneyland next week! We leave on Monday! We are all very excited, especially Jacob. I will make sure and take a lot of pictures and then I will post them here for you to see.
Love to you all!
Angie
Tuesday, March 22, 2005
Well, we were able to take Kaelyn home on Saturday. She absolutely loved being home. She ran around and played with everything and everyone! But, unfortunately, on Sunday she was having some pain and swelling on her right side. So, we took her to the ER and they admitted us. Atleast we were able to have 24 hours of fun at home. My parents were visiting from Utah over the weekend, so it was nice for them to be able to see her out of the hospital, even though it was for a short time.
They are going to let us go home today though. Which was a suprise to me! I am very excited. They think that her pain and swelling was from her biliary drain backing up some. We have it clamped so it was exclusively draining internally. But now we have a bag on again so it will drain both internally and externally. It has seemed to solve the problem for now. We are going to try and clamp it off again on Sunday and then come in on Monday for a clinic visit with the transplant docs. I am sure we will discuss a more permanent option at that time. We may have to place another stendt. But we will see.
We are still trying to plan our Disney trip for the first week in April. We had to hold off on getting tickets becuase they wouldn't insure our trip while Kaelyn was in the hospital, so hopefully today we will be able to book our trip!
We love you all!
Angie
They are going to let us go home today though. Which was a suprise to me! I am very excited. They think that her pain and swelling was from her biliary drain backing up some. We have it clamped so it was exclusively draining internally. But now we have a bag on again so it will drain both internally and externally. It has seemed to solve the problem for now. We are going to try and clamp it off again on Sunday and then come in on Monday for a clinic visit with the transplant docs. I am sure we will discuss a more permanent option at that time. We may have to place another stendt. But we will see.
We are still trying to plan our Disney trip for the first week in April. We had to hold off on getting tickets becuase they wouldn't insure our trip while Kaelyn was in the hospital, so hopefully today we will be able to book our trip!
We love you all!
Angie
Wednesday, March 16, 2005
One biliary drain out!
Today they took out the old biliary tube. It only took them about 15 minutes and she did not need any sedation. So far so good, no evidence of any bacteremia like last time. I was a little nervous when they took her to do the procedure, but all of the docs assured me that it would most likely not happen because she is on so many IV antibiotics. I think she will be fine. It will be nice not having two drains to worry about. Tomorrow I think we will clamp off the external part of the new drain and see if it will just drain exclusively internally. That is the goal. If it works, we won't need to have the big bag hanging off of her any more. Even though she does look awfully cute carrying it around in her cure little Hello Kitty pink backpack!
Well, the meeting with all of the docs yesterday went well. I think we cleared up a bunch of our questions. The liver is in good shape to handle the chemo, we really shouldn't have any problems with the livers function. And we decided for sure to start the Irinotecan chemotherapy on the 11th of April. It will be pretty intense, more than I thought. She will be on for 5 days, have two days off, on for 5 more days and then have two weeks off. We will go through 2 courses of this and then rescan and check her AFP. If her tumors look responsive to the treatment we will continue, if they are not, we will reconsider treatment. There are other chemos we can try, but they produce much worse side effects and require a whole lot more time in the hospital. But we will just pray that the Irinotecan works.
We are thinking we will go to Disneyland the first week in April. That will be so fun for us all I think! We are all very excited. It will be good to enjoy our children well and happy together.
Love to all,
Angie
Well, the meeting with all of the docs yesterday went well. I think we cleared up a bunch of our questions. The liver is in good shape to handle the chemo, we really shouldn't have any problems with the livers function. And we decided for sure to start the Irinotecan chemotherapy on the 11th of April. It will be pretty intense, more than I thought. She will be on for 5 days, have two days off, on for 5 more days and then have two weeks off. We will go through 2 courses of this and then rescan and check her AFP. If her tumors look responsive to the treatment we will continue, if they are not, we will reconsider treatment. There are other chemos we can try, but they produce much worse side effects and require a whole lot more time in the hospital. But we will just pray that the Irinotecan works.
We are thinking we will go to Disneyland the first week in April. That will be so fun for us all I think! We are all very excited. It will be good to enjoy our children well and happy together.
Love to all,
Angie
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