1/2 OF AN ANGELS HEART
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown
-This was a poem that we found when Kylie was first diagnosed and it was comfort to us. I know I have shared it before, but I would like to share it again. I still choke up a little near the end of the poem.
So today is pretty much the same as it was yesterday and the day before, giving her lasixs and antibiotics and waiting. They also draw her blood daily as well, to check and make sure her levels are normal and that she isn't fighting an infection. Two of her's are a little high but the doctors assure us that they are elevating those with the lasixs, so we don't need to worry.
We are still trying to get some of the fluid off of her belly. We had that one big pound off when we first started but now it has been stagnant, with no real big loss. Granted there hasn't been any more in the way of gain either, so I think we will take what we can get :-).
We have a heart cath scheduled for Monday at 8:30 am. They are going to check the pressures in the heart and the function of the heart to see if that is what is causing all the excess fluid. They may also put in another fenestration if they deem it necessary. They are also talking about, since she is going to be sedated anyway, doing a Therapeutic fluid draw off of her belly. That is where they do what they did on Friday, take some fluid off the belly, but they work to get as much as they can off of her. So here we sit enjoying the company of the nurses and the other families.
If I could ask for a specific prayer for Kylie as well, I would like to ask for prayers for her fear of procedures. To say that Kylie has been through a lot is like saying the U of M football team is in need of practice, sorry guys I am an Ohio State fan :-). She has always been a little apprehensive around medical things, but latetly, even before the hospital stay, it has been full blown panic attacks. The moment she walks into an exam room she starts getting apprehensive and, a lot of times, when the doctors start to exam she screams and cries. When she sees needles, she starts screaming ALL DONE ALL DONE. Now I realize that this could be very normal for someone her age and what she has been through. I mean, I hate shots, and I haven't been through nearly as much she has but I hate seeing my daughter terrified and doctors and exams are going to be a part of her life. So, if you could pray for a spirit of comfort, peace and trusting for Kylie and one of wisdom for Aubrey and I, so that we best know how to help her through this we would appreciate it. Thank you.
I would also like to take a moment and offer a bit of encouragement to people if I could? What's that you say? I can, why thank you. This can be for everyone but I offer it specifically to parent's of special needs children. I am a Christian, I believe in a loving God who sent His Son to die for us and I believe that God knew what He was doing when He gave you your little one. I know that sometimes (or ALOT OF TIMES) it can feel over whelming and that everything is crashing in on top of you and that you are not equipped to handle all of this, I feel that ways at times. But I believe that when you look at the Bible, in the creation story, it shows God forming us with His own two hands and placing his mouth against ours and breathing His own life into us. This is very comforting to me because that tells me that the creator of all things knows me inside and out (not to mention my child, as well), knows my strengths and my weaknesses and if He feels that I can handle all of this, then that is saying something and I believe that holds true for all of us. Now that is not to say I don't get mad and am happy all the time, not at all. In fact, I think being mad can be very healthy, your little one is hurting, the child that you love more than anything is sick and hurting and you are at a lost to help. That is a very maddening place to be. I just encourage you to find constructive ways to deal with it. Be it exercise, journaling, talking, praying, beating the crud out of something soft :-), pillow, mattress, etc. (not the dog ;-), whatever, that is healthy, to deal with the stress and pressure. Also I encourage you to use that passion to learn and to become the best advocate for your little one as you can. Knowledge is power, my friends and the more I have learned, the more in awe of God and Kylie I am, and the less helpless I feel. For me, humor is stress reliever for me, as well. I try to find the funny in these things. like the fact that we have med students and I get to pick on them a little :-D. Finally, sometimes I think it comes down to a choice...there are days where I CHOOSE to be happy. I once had heard a minister say "You can't choose your day, but you can choose your attitude" and that has always stuck with me. Bad things are going to happen but how we choose to deal with them are up to us. Alright, I am stepping off my soap box, that was just something that I have been thinking about lately and I thought I would share. If it is helpful to you then AWESOME, if not, I hope and pray that you will find something that will help you get through this. Have a good day, if there is anything we can do, or pray for, let us know.
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown
-This was a poem that we found when Kylie was first diagnosed and it was comfort to us. I know I have shared it before, but I would like to share it again. I still choke up a little near the end of the poem.
So today is pretty much the same as it was yesterday and the day before, giving her lasixs and antibiotics and waiting. They also draw her blood daily as well, to check and make sure her levels are normal and that she isn't fighting an infection. Two of her's are a little high but the doctors assure us that they are elevating those with the lasixs, so we don't need to worry.
We are still trying to get some of the fluid off of her belly. We had that one big pound off when we first started but now it has been stagnant, with no real big loss. Granted there hasn't been any more in the way of gain either, so I think we will take what we can get :-).
We have a heart cath scheduled for Monday at 8:30 am. They are going to check the pressures in the heart and the function of the heart to see if that is what is causing all the excess fluid. They may also put in another fenestration if they deem it necessary. They are also talking about, since she is going to be sedated anyway, doing a Therapeutic fluid draw off of her belly. That is where they do what they did on Friday, take some fluid off the belly, but they work to get as much as they can off of her. So here we sit enjoying the company of the nurses and the other families.
If I could ask for a specific prayer for Kylie as well, I would like to ask for prayers for her fear of procedures. To say that Kylie has been through a lot is like saying the U of M football team is in need of practice, sorry guys I am an Ohio State fan :-). She has always been a little apprehensive around medical things, but latetly, even before the hospital stay, it has been full blown panic attacks. The moment she walks into an exam room she starts getting apprehensive and, a lot of times, when the doctors start to exam she screams and cries. When she sees needles, she starts screaming ALL DONE ALL DONE. Now I realize that this could be very normal for someone her age and what she has been through. I mean, I hate shots, and I haven't been through nearly as much she has but I hate seeing my daughter terrified and doctors and exams are going to be a part of her life. So, if you could pray for a spirit of comfort, peace and trusting for Kylie and one of wisdom for Aubrey and I, so that we best know how to help her through this we would appreciate it. Thank you.
I would also like to take a moment and offer a bit of encouragement to people if I could? What's that you say? I can, why thank you. This can be for everyone but I offer it specifically to parent's of special needs children. I am a Christian, I believe in a loving God who sent His Son to die for us and I believe that God knew what He was doing when He gave you your little one. I know that sometimes (or ALOT OF TIMES) it can feel over whelming and that everything is crashing in on top of you and that you are not equipped to handle all of this, I feel that ways at times. But I believe that when you look at the Bible, in the creation story, it shows God forming us with His own two hands and placing his mouth against ours and breathing His own life into us. This is very comforting to me because that tells me that the creator of all things knows me inside and out (not to mention my child, as well), knows my strengths and my weaknesses and if He feels that I can handle all of this, then that is saying something and I believe that holds true for all of us. Now that is not to say I don't get mad and am happy all the time, not at all. In fact, I think being mad can be very healthy, your little one is hurting, the child that you love more than anything is sick and hurting and you are at a lost to help. That is a very maddening place to be. I just encourage you to find constructive ways to deal with it. Be it exercise, journaling, talking, praying, beating the crud out of something soft :-), pillow, mattress, etc. (not the dog ;-), whatever, that is healthy, to deal with the stress and pressure. Also I encourage you to use that passion to learn and to become the best advocate for your little one as you can. Knowledge is power, my friends and the more I have learned, the more in awe of God and Kylie I am, and the less helpless I feel. For me, humor is stress reliever for me, as well. I try to find the funny in these things. like the fact that we have med students and I get to pick on them a little :-D. Finally, sometimes I think it comes down to a choice...there are days where I CHOOSE to be happy. I once had heard a minister say "You can't choose your day, but you can choose your attitude" and that has always stuck with me. Bad things are going to happen but how we choose to deal with them are up to us. Alright, I am stepping off my soap box, that was just something that I have been thinking about lately and I thought I would share. If it is helpful to you then AWESOME, if not, I hope and pray that you will find something that will help you get through this. Have a good day, if there is anything we can do, or pray for, let us know.
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