I snapped these pics tonight and I absolutely love them. They're so cute.
Thursday, September 13, 2007
Wednesday, September 12, 2007
Day 112
I know that it has been awhile since I have updated Katlyn's blog. To tell the truth things have been a little hard for us since we found out that we wouldn't be coming home. We have been trying to de-scramble our brains and get back on track. I think we are doing a lot better now, but sometimes it can get really tough. It will soon be a year that Katlyn has been in isolation and we are so anxious for her to come out. I think one of the biggest things that we had a hard time was the fact that going home meant that Katlyn's was doing a lot better. In essence by her not going home, it kind of felt like the opposite. That is not true though.
The t-cell function test that stopped us from going home has a lot of probability of error. I think that everyone was kind of surprised by the results to say the least, and I think we are kind of thinking it may have been a mistake. They took the blood for that test last Thursday, so it takes about 10 days to get the results back.
Besides that Katlyn is doing fantastic. The GCSF seems to be working very well. Her first shot lasted up until yesterday which would make it about 12 days I think. She got a new shot yesterday and her neutrophils shot up to 13,000 today, which is great because it show that her bone marrow has that reserve. Her lympocytes also seem to be going up gradually. Before it seemed as though Katlyn barely spent anytime over the 100 mark and in the past week and half she has been over everyday except once. Today she was just under 200 and yesterday even higher.
The doctor told me today that Katlyn's numbers are looking really great. She has the highest ADA activity since she has been here, basically she is half way to normal. Also, her toxic metabolites are staying low as well. So those two numbers show them that the gene therapy is working. It will only be a matter of time before those new cells get stronger and take over and Katlyn is fully restored. The reason why they think everything is taking so long is because they gave her such a small number of cells to begin with. Also they think it's possible that children with ADA may also have problems with neutrophenia, as they have seem with both Katlyn and their previous patient.
The little princess is great. She is now fully transitioned from lactose free formula to regular whole cow's milk, and she is having no problems at all. She is starting to want out of her room more and more, and she seems to be getting braver and braver. Sometimes when the door opens she rushes over so fast she almost escapes. Also, if you have her in your arms and you are in front of the door she will try and open it. It will be really nice when Katlyn doesn't have to be in isolation anymore.
This have been such a long road and we still have so far to go. The thing is, it could have been an even harder road, and I just keep trying to remind myself of that. Katlyn is doing great. She's not sick and the gene therapy is working, and that's exactly what we want.
The t-cell function test that stopped us from going home has a lot of probability of error. I think that everyone was kind of surprised by the results to say the least, and I think we are kind of thinking it may have been a mistake. They took the blood for that test last Thursday, so it takes about 10 days to get the results back.
Besides that Katlyn is doing fantastic. The GCSF seems to be working very well. Her first shot lasted up until yesterday which would make it about 12 days I think. She got a new shot yesterday and her neutrophils shot up to 13,000 today, which is great because it show that her bone marrow has that reserve. Her lympocytes also seem to be going up gradually. Before it seemed as though Katlyn barely spent anytime over the 100 mark and in the past week and half she has been over everyday except once. Today she was just under 200 and yesterday even higher.
The doctor told me today that Katlyn's numbers are looking really great. She has the highest ADA activity since she has been here, basically she is half way to normal. Also, her toxic metabolites are staying low as well. So those two numbers show them that the gene therapy is working. It will only be a matter of time before those new cells get stronger and take over and Katlyn is fully restored. The reason why they think everything is taking so long is because they gave her such a small number of cells to begin with. Also they think it's possible that children with ADA may also have problems with neutrophenia, as they have seem with both Katlyn and their previous patient.
The little princess is great. She is now fully transitioned from lactose free formula to regular whole cow's milk, and she is having no problems at all. She is starting to want out of her room more and more, and she seems to be getting braver and braver. Sometimes when the door opens she rushes over so fast she almost escapes. Also, if you have her in your arms and you are in front of the door she will try and open it. It will be really nice when Katlyn doesn't have to be in isolation anymore.
This have been such a long road and we still have so far to go. The thing is, it could have been an even harder road, and I just keep trying to remind myself of that. Katlyn is doing great. She's not sick and the gene therapy is working, and that's exactly what we want.
Wednesday, September 5, 2007
I can't even find the words to describe how life is as a yo yo. One minute you're shining, smiling and feel like everything is beginning to go in the right direction, and within two minutes all of that being ruined once again. Katlyn was all set to go back to Canada tomorrow. We were so close this time and so excited to be on Canadian soil again. But with Katlyn's doctor came a very familiar speech that we have already heard twice before now. Her t-cell proliferation has dropped to an extremely low number. Therefore, she is not safe to leave this room. They want her function to be at 10,000 and they got the results back today that Katlyn was 500.
You would think that we would be so used to all of this. The past year of our lives have been nothing but a huge roller coaster ride of emotions. We are only human though and I'm not sure how much more of this we can take. I just want my little girl to get better. There isn't one thing in this world I wouldn't do to make that happen. I want her to be able to be strong enough to live a normal life. I just want it so bad.
The feeling I get inside my stomach and in my heart having Katyn sick are the most unpleasant feelings I have ever felt. A part of me is lost and will remain lost until she is healthy. To be completely honest I'm scared to death. I just don't want anything bad to happen to Katlyn. She has been through so much already in her short life and really I couldn't imagine her having to go through anymore. I know this journey is far from over. I know that. But I want so badly to start seeing some more light through that tunnel. It always seems as though every time we take one step forward we take a couple back.
Right now she's playing with her dad and she really is the smartest, funniest and sweetest little girl in this whole world. She is so tough. She is going to do great.
I pray to God that Johnathan and I can somehow find some more reserve of strength inside us. We need to remain strong for Katlyn. We have to. We have no choice. But to be truthful I feel as though I'm going to lose it.
It is so frustrating not being able to have answers to all of our questions about Katlyn's condition. I know her condition is extremely rare, but it would be nice to know something instead of always guessing. This is all just eating me up inside.
I hate living in this world. Having a sick child and being in the atmosphere with sick children all around you isn't fun. I know that some of you reading this are in this same world, but some of you will never understand. It really is so heartbreaking.
One thing that this whole experience has taught me is to be grateful for what we do have. I have the most amazing girl. She is the toughest most bravest sweetie ever. She never lets anything get her down. She's a fighter through and through, and that is how I know she is going to fight this. You know it's really hard to stay upset about anything with Katlyn in my life. She just always seems to make thing better. I mean........if you could see her.
So the plan is to get another proliferation done to see where Katlyn is with her t-cell function. Hopefully all is well. I pray it is.
She's a tough cookie and she's really going to fight her deficiency. I know it. I can feel it in my heart.
You would think that we would be so used to all of this. The past year of our lives have been nothing but a huge roller coaster ride of emotions. We are only human though and I'm not sure how much more of this we can take. I just want my little girl to get better. There isn't one thing in this world I wouldn't do to make that happen. I want her to be able to be strong enough to live a normal life. I just want it so bad.
The feeling I get inside my stomach and in my heart having Katyn sick are the most unpleasant feelings I have ever felt. A part of me is lost and will remain lost until she is healthy. To be completely honest I'm scared to death. I just don't want anything bad to happen to Katlyn. She has been through so much already in her short life and really I couldn't imagine her having to go through anymore. I know this journey is far from over. I know that. But I want so badly to start seeing some more light through that tunnel. It always seems as though every time we take one step forward we take a couple back.
Right now she's playing with her dad and she really is the smartest, funniest and sweetest little girl in this whole world. She is so tough. She is going to do great.
I pray to God that Johnathan and I can somehow find some more reserve of strength inside us. We need to remain strong for Katlyn. We have to. We have no choice. But to be truthful I feel as though I'm going to lose it.
It is so frustrating not being able to have answers to all of our questions about Katlyn's condition. I know her condition is extremely rare, but it would be nice to know something instead of always guessing. This is all just eating me up inside.
I hate living in this world. Having a sick child and being in the atmosphere with sick children all around you isn't fun. I know that some of you reading this are in this same world, but some of you will never understand. It really is so heartbreaking.
One thing that this whole experience has taught me is to be grateful for what we do have. I have the most amazing girl. She is the toughest most bravest sweetie ever. She never lets anything get her down. She's a fighter through and through, and that is how I know she is going to fight this. You know it's really hard to stay upset about anything with Katlyn in my life. She just always seems to make thing better. I mean........if you could see her.
So the plan is to get another proliferation done to see where Katlyn is with her t-cell function. Hopefully all is well. I pray it is.
She's a tough cookie and she's really going to fight her deficiency. I know it. I can feel it in my heart.
Tuesday, September 4, 2007
So as some of you have already probably seen, Katlyn got to go on a little adventure yesterday. We decided to allow her to have a little trip outside yesterday after careful consideration. Katlyn has almost spent a whole year trapped in a hospital room and yesterday she had the opportunity to go outside. We don't know when she may be able to go outside again so we decided to let her break free for an hour. We have no idea if Katlyn will send 1 months or six more months in the hospital and we knew that this wouldn't only do her a world of good, it would do us good too.
All I can say of the whole situation, as Katlyn's mother, is that yesterday was one of the most amazing days of our lives. It was a very nice gift to be able to give her. She has been through so much and still has such a long road ahead of her. It was a really nice little breaking and it was nice to have some normalcy for once.
All wasn't completely normal still. Katlyn had to wear a mask for protection and she wasn't allowed out of her stroller to wander, but it was a nice step in the right direction. Her doctors feel as though Katlyn does have enough protection that she would be able to go outside.
Katlyn wasn't scared at all. She seemed to just go with the flow and the thing she was most fascinated with was the trees. She was already familiar with trees somewhat because she has some just outside her window, so when we got outside it seemed as though it was the thing she noticed the most. She also got to see lots of flowers, including some roses. We were also able to show her some tomatoes, cars and a huge tractor.
I can't even put into words how yesterday was for us. It really was magical. To tell you the truth, it didn't even seem real. To have our little girl outside like a somewhat normal child, seems so insane I still don't know if it actually happened. Oh dear, I'm tearing up now. I just can't wait until Katlyn gets better and is able to live like a normal child as she deserves so much. The past year has been the most difficult time in my entire life and soon we'll be in the clear. She really is going to get through all this. I know it. I can feel it in my heart.
It really fascinates me looking at Katlyn and how little she has been affected by all this isolation. I know some parts of her life has been affected, but she still remains so happy and excels in all other areas. It's remarkable.
So the GCSF is working and it is looking like we will be coming back to Canada on Thursday. We are trying to remain neutral about the whole ordeal, because we don't want to be shattered again. So Katlyn may go back to the IWK on Thursday and if she does than that's fantastic. It will be nice to be back and I'm sure Johnathan is missing Haley very much. We will actually be able to try and get things ready for Katlyn to actually leave the hospital. From here we haven't been able to do anything. But at least there we can start getting my mother's house ready or finding a new apartment, whatever it may be. Besides that Katlyn is doing great. Right now she hiding behind the bed up to no good I'm sure. My little monkey.
All I can say of the whole situation, as Katlyn's mother, is that yesterday was one of the most amazing days of our lives. It was a very nice gift to be able to give her. She has been through so much and still has such a long road ahead of her. It was a really nice little breaking and it was nice to have some normalcy for once.
All wasn't completely normal still. Katlyn had to wear a mask for protection and she wasn't allowed out of her stroller to wander, but it was a nice step in the right direction. Her doctors feel as though Katlyn does have enough protection that she would be able to go outside.
Katlyn wasn't scared at all. She seemed to just go with the flow and the thing she was most fascinated with was the trees. She was already familiar with trees somewhat because she has some just outside her window, so when we got outside it seemed as though it was the thing she noticed the most. She also got to see lots of flowers, including some roses. We were also able to show her some tomatoes, cars and a huge tractor.
I can't even put into words how yesterday was for us. It really was magical. To tell you the truth, it didn't even seem real. To have our little girl outside like a somewhat normal child, seems so insane I still don't know if it actually happened. Oh dear, I'm tearing up now. I just can't wait until Katlyn gets better and is able to live like a normal child as she deserves so much. The past year has been the most difficult time in my entire life and soon we'll be in the clear. She really is going to get through all this. I know it. I can feel it in my heart.
It really fascinates me looking at Katlyn and how little she has been affected by all this isolation. I know some parts of her life has been affected, but she still remains so happy and excels in all other areas. It's remarkable.
So the GCSF is working and it is looking like we will be coming back to Canada on Thursday. We are trying to remain neutral about the whole ordeal, because we don't want to be shattered again. So Katlyn may go back to the IWK on Thursday and if she does than that's fantastic. It will be nice to be back and I'm sure Johnathan is missing Haley very much. We will actually be able to try and get things ready for Katlyn to actually leave the hospital. From here we haven't been able to do anything. But at least there we can start getting my mother's house ready or finding a new apartment, whatever it may be. Besides that Katlyn is doing great. Right now she hiding behind the bed up to no good I'm sure. My little monkey.
Monday, September 3, 2007
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