This rollercoaster ride sure has some good moments. The concert in the hospital was definitely one of those moments. It was extremely humbling and touching. These kids were all confined to their rooms and making the best of their night. They opened their doors and shared their talents. Kids ranging from 2-17. I wish I had all of it on video. Here is a link to a small part of it and it is pretty obvious that these kids are special.
http://www.youtube.com/watch?v=sqVRUChSM9g
There is just something about PCMC. You never want to be there when you are trapped there, but at the same time it is a really special place... and has a really special feeling about it. The people that work there are all angels and make it so much better. Taleah had her "favorites" but never really had any that she disliked. I had my favorites as well and those nurses will forever hold a special place in my heart! I mean, we practically lived with them for 4 months. You can never get away... when you are sleeping, when you have to use the bathroom in the middle of the night and make the long walk down the hall, when you are brushing your teeth or taking make-up off, ect. There is always someone. They see the good and the bad, the happy and the sad, the pretty and the ugly. They know way too much, but still make ya feel like they aren't even judging. It's great. They really are great. Taleah wanted to make a music video of the nurses to a song she loves (don't judge me for the song she chose). They were such great sports and played right along. I had to share the video so everyone can see how awesome they really are (I really wish I wasn't in it... the things we do for our kids).
http://www.youtube.com/watch?v=ZzDQLq8nXng&list=UUDhfin5GWGN87JUX3al5IRA
As for Taleah... it has been a rough week. I guess not has rough as weeks before, but you just hope and assume that she is going to be better now that we aren't in the hospital. It is a long road ahead and I have to remember that this is a marathon not a sprint. Ugh.. that patience again. I think the poor girl feels like she will never be normal again. She keeps asking me questions about when and how long. I think she is trying to grasp how long life will be like this.
Some days are better than others. I would say, on average, she has about 3-5 hours a day that she feels pretty good. Pretty good meaning that she will sit up, on the ground or at the table and do something (play game, color, craft). The rest of the day she prefers to lay on the couch or in the bed and "watch something" (she doesn't really watch). They are encouraging her to get up and move but it is really hard to do. We are also encouraging eating/drinking and that is a task in itself. We have her on fluid at night this week because of the cold she caught and I think it has made a difference. No food sounds good to her and she would prefer to eat 1 or 2 bites and I have to force an additional 6-8 bites. It is a constant battle. Her temp has been a little higher than her norm and it gives me anxiety. Fevers are not taken lightly so sleep has been limited because I felt the need to take her temp all night long. I am hoping it is her body fighting the cold, but ya never know.
The pills... oh man. It is a battle every morning and every night. She takes between 8-12 every morning and night. I wrap them in starbursts every Sunday (takes me about 1-2 hours to prepare the pills for the week) to make it easier for her so I can't imagine what it would be like to do it without... which I am threatening at this point because I am sick of the battle. I know she hates it and so sick of it but it goes back to the concept that we are doing all of these crappy/hard things to try and save her life. That is hard to fully explain to a 5 year old, but I think she gets more than we give her credit for. She is a smart girl.
We will go to clinic for our weekly appointments and we will check labs again. They say that her labs are looking great so far and even better than average at this point. That is great to hear, but I am not sure that I will ever rest easy again. Again, that is no way to live so maybe once we get to Day 100 and know that she is 100% donor and then I can feel a little better. She will receive 4 more Lumbar Punctures with intrathecal chemo (which is routine) over the next 8 weeks. I really really really wish that they would let us return to STG a little sooner than 100 days. This living apart thing is not very fun at all. It seems very rare that just the 6 of us are under one roof. I miss that. I miss being a family. I know the time will come, but I still miss it and yearn for that day.
We are super grateful for the people in this world. The amazing family and friends. The amazing strangers that are so willing to give. There is NO way that any of this would be possible. Especially the days when I have a bad attitude and pity our lives. It's so lame that I get that way, but those amazing people always change that around in no time at all.
Taleah is lucky to have so many that love her and support/pray for her.
We always talk about that day that we can give back and help others.
That will be the day! Can't wait!
(my dumb computer won't let me upload pictures... next time because I have some good ones)
http://www.youtube.com/watch?v=sqVRUChSM9g
There is just something about PCMC. You never want to be there when you are trapped there, but at the same time it is a really special place... and has a really special feeling about it. The people that work there are all angels and make it so much better. Taleah had her "favorites" but never really had any that she disliked. I had my favorites as well and those nurses will forever hold a special place in my heart! I mean, we practically lived with them for 4 months. You can never get away... when you are sleeping, when you have to use the bathroom in the middle of the night and make the long walk down the hall, when you are brushing your teeth or taking make-up off, ect. There is always someone. They see the good and the bad, the happy and the sad, the pretty and the ugly. They know way too much, but still make ya feel like they aren't even judging. It's great. They really are great. Taleah wanted to make a music video of the nurses to a song she loves (don't judge me for the song she chose). They were such great sports and played right along. I had to share the video so everyone can see how awesome they really are (I really wish I wasn't in it... the things we do for our kids).
http://www.youtube.com/watch?v=ZzDQLq8nXng&list=UUDhfin5GWGN87JUX3al5IRA
As for Taleah... it has been a rough week. I guess not has rough as weeks before, but you just hope and assume that she is going to be better now that we aren't in the hospital. It is a long road ahead and I have to remember that this is a marathon not a sprint. Ugh.. that patience again. I think the poor girl feels like she will never be normal again. She keeps asking me questions about when and how long. I think she is trying to grasp how long life will be like this.
Some days are better than others. I would say, on average, she has about 3-5 hours a day that she feels pretty good. Pretty good meaning that she will sit up, on the ground or at the table and do something (play game, color, craft). The rest of the day she prefers to lay on the couch or in the bed and "watch something" (she doesn't really watch). They are encouraging her to get up and move but it is really hard to do. We are also encouraging eating/drinking and that is a task in itself. We have her on fluid at night this week because of the cold she caught and I think it has made a difference. No food sounds good to her and she would prefer to eat 1 or 2 bites and I have to force an additional 6-8 bites. It is a constant battle. Her temp has been a little higher than her norm and it gives me anxiety. Fevers are not taken lightly so sleep has been limited because I felt the need to take her temp all night long. I am hoping it is her body fighting the cold, but ya never know.
The pills... oh man. It is a battle every morning and every night. She takes between 8-12 every morning and night. I wrap them in starbursts every Sunday (takes me about 1-2 hours to prepare the pills for the week) to make it easier for her so I can't imagine what it would be like to do it without... which I am threatening at this point because I am sick of the battle. I know she hates it and so sick of it but it goes back to the concept that we are doing all of these crappy/hard things to try and save her life. That is hard to fully explain to a 5 year old, but I think she gets more than we give her credit for. She is a smart girl.
We will go to clinic for our weekly appointments and we will check labs again. They say that her labs are looking great so far and even better than average at this point. That is great to hear, but I am not sure that I will ever rest easy again. Again, that is no way to live so maybe once we get to Day 100 and know that she is 100% donor and then I can feel a little better. She will receive 4 more Lumbar Punctures with intrathecal chemo (which is routine) over the next 8 weeks. I really really really wish that they would let us return to STG a little sooner than 100 days. This living apart thing is not very fun at all. It seems very rare that just the 6 of us are under one roof. I miss that. I miss being a family. I know the time will come, but I still miss it and yearn for that day.
We are super grateful for the people in this world. The amazing family and friends. The amazing strangers that are so willing to give. There is NO way that any of this would be possible. Especially the days when I have a bad attitude and pity our lives. It's so lame that I get that way, but those amazing people always change that around in no time at all.
Taleah is lucky to have so many that love her and support/pray for her.
We always talk about that day that we can give back and help others.
That will be the day! Can't wait!
(my dumb computer won't let me upload pictures... next time because I have some good ones)
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