My heart just breaks.....

Okay... I am sure you don't remember, me and my sister made a bunch of flower clips for babies, I think last year, for a yard sale that was going on for the cutest little girl named Maggie. They didn't know what was going on with her. She was very very sick and was just losing weight like crazy and couldn't keep it on for anything. I just got word from a friend that she is actually to the point now that she is terminal. She was diagnosed with Mitochondrial disease. When you see pictures of this little girl you just want to cry. She is a little older than Talon. She currently weighs 16 pounds 14oz. Here is a little part of her blog...

"she finally came in and said that she had received the results of the biopsy and said she was going to talk to another cardiologist about what needs to happen next. So anyway then she continues to tell us that Maggies echo was worse than her last echo and that looking at this shows that this is why her other organs are all having trouble. Maggies septum in her heart is not working as well. She asked me how invasive we wanted to go with Maggie and I said that we don't want to be too invasive because of all of her problems the outcome would not be very good. But that we would need to discuss everything as things came along. She absolutely agreed with me and said that she would not do a transplant on Maggie and she would not do a pacemaker on Maggie because she does not think Maggie would make it through that process and because if she did make it she would have deteriorated a lot to have made it and her life would not be good. So then she tells us that what we want to hope happens is that when its time, Maggie gets an arrhythmia and that is how she goes because it will be painless. Not sure what to think about this. I think I may have been in a little shock at this point. She says that she is going to see Maggie one more time and then she will probably transfer her care over to the heart failure doctor. Maggie is not in heart failure yet but apparently that is where she is headed. She tells us that because of her heart this is part of what is causing Maggie to have trouble digesting. So basically there is nothing we can do about that. There are a few meds that we could try to help the heart but there is nothing we can do to fix the heart. However she doesn't think Maggie can take the meds for this because Maggie has such a low heart rate. These meds will make it slower and she will need to be watched super closely if this is what is decided to do. She says that we can not put Maggie back on TPN because not only of the liver problems but because she gets infections so easily. If her heart rate goes high like when she gets infections she said that this is when the arrhythmia will happen which will mean Maggie will not make it. So not only can we not have her heart rate low, now we have to watch so carefully that it doesn't go too high. So she said that there is really no way to get Maggie to keep her weight or gain really. Basically, she says that we are going to watch Maggie starve to death which will make her heart give out. Unless another doctor can come up with some other way to get her to digest or get her calories without a central line. So there is nothing we can do about it. It is so frustrating to know the plan of your childs death and not be able to do anything about it. I can't even explain the feeling I have or how to move on with daily things right now. My head is just spinning in circles trying to come up with something."

When I saw this little girl, a while back, she just smiled at everyone that came. She was just too darn cute. I don't even want to know what her mother goes through on a daily basis. It just breaks your heart to see a little girl so little and so cute and yet so sick. You just don't think it is possible to have a little one so sick. It just doesn't seem fair. I just found out that they are going to have a boutique/bake sale for her and her family to be able to go and have fun as a family while they still have time. Sounds like they wanted to go to Disneyland this December.... doctors told them they NEED to try and go sooner. Doesn't sound like they think she will be well at all then. I am trying so hard to fight back the tears. Now that I am a Mom and experience how much pain you go through just to see your child go through something as simple as the common cold.. I can't even imagine something like this. To put one of my own children in little Maggies shoes... makes me sick with the mere thought....I am sure every little bit helps to try and get through this time. So, I guess what I am getting to, is, if any of you have anything you would like to make or bake for this boutique/bake sale, let me know. It is on Sepmtember 18th. I would love to bring things over to them. I am racking my brain trying to figure out what I could possibly do. Please take a look at her family blog..michelleagnew.blogspot.com. If you want you can also email me ChalliseT@gmail.com. Unfortunately, things like this make you realize how lucky you are.