10/20/2011

1am I just read this ariticle about a mother who is loosing her son to Tay-Sa chs disease amd it brought to light so many things. I realized that with Liam I am trying to make the best of every day I have with him because I have seen that with CDH kids you never know what the future holds. I am thankful that there still is a future involved with Liam that he doesn't have a death sentance like Ronan from the article. Because of Liam's uncertain future I realize that I parent him differently than I do my perfectly healthy 3 year old. I find myself more tolerant and easy going with Liam and more stern with Lanie. I realize now that noticing what I am doing that this is not fair for either child. Lanie will end up resenting Liam for us being easier on him and for spending so much time away from him since his birth. Liam will end up hating his sister for resenting him and therefor being mean to him. It's something that needs to be addressed and changed. No more can Lanie loose her parents just because Liam is sick and admitted into the hospital again. I need to be more patient with her and understanding. As hard as this is on my it must be ten times harder on her. If something should happen to Liam. God forbide, I want Lanie to have been able to spend as much time as she could with Liam. I want our family to spend time as a family and make as many memories as we can. We have witnessed how quickly the health of a CDH baby can go downhill so quickly so we don't take for grantit how well he is doing now because things can always be worse. Still when thinking of Liam there is still a future, there is hope. So he won't be able to play football or be a boxer, the great thing is life will still go on. He might not even be able to be a race car driver but he can still enjoy the sport. The wonderful thing is Liam has a fighting chance. We have spent alot of time in hospitals and undergone many procedures but we still have him. We can still hold him and tell him how much we love him. Children are blessing sent from God. Liam just happens to have to work harder than most. But still things could be worse. I encourage all to read this article called "Notes from a Dragon Mom". It'll make you rethink your perspective. If you think you have it bad just remember there is always someone else out there that has it worse. You should be thankful for what you have not regretful for what you don't have. I see this moms point of view and to an extent do the same things. I am always defending my child. When someone refuses to see that Liam is different I pound it into their heads that he is and that I almost lost him before I ever got to hold him. When I see pregnant women out there smoking or drinking or doing drugs is makes me angry to no end. They don't understand what that does to a child. They take for grantit that children are born healthy and happy that you don't have to do anything differently for it to be so. I did everything right during my pregnancy. Took what I was supposed to , stay away from what was harmful and still my son was born with a defect that almost killed him. Read this article. Maybe cry alittle, I know I cried for this family, then prayed for them. Then hug your children close and tell them everyday how much you love them. Even if your mad at them, if their in trouble, it doesn't matter. When your done yelling at them don't forget to tell them you love them. Stop taking for grantit today because you never know about tomarrow. http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=2

10/20/11 9pm
We had a meeting with the doctors this morning. I'm sick and tired of fighting for my son to get the care he deserves. I'm tired of the doctors not doing anything until they are forced too.I'm at my wits end. Unfortunately Justin hasn't reached the point I'm at. One minute he thinks he needs to be transfered to UCSF the next he's fine with the way things are going here. All the doctors are doing is passifing us and they can tell its working on him so they keep doing it. It's the only reason we got them to do more. The doctor tried to tell us today that we asked for things to be done slowly with Liam. I just staired at him because not once did we say they were moving too fast or pushing too hard. Every step of the way weve told them their not doing enough. He tried to pass the blame onto us. They tried to discharge Liam while he was still vommiting and now they want to blame us because we have a grievance against them. Not only am I fighting the doctors Im fighting Justin and somewhere someone has to give. I wish I had all the answers, have tried to get all the answers but they just aren't there. I feel lost and confussed. I want to scream at the doctors to just fix Liam. How hard can it be to just fix him? They went from thinking it had nothing to do with CDH to thinking it could be linked to his high floppy right side diaphragm. I just don't know. I'm loosing sleep over this. I can't sleep, I'm never hungry, Im terminally pissed off. I have so much pent up anger and all it's going to take is one of these doctors or nurses popping off at the mouth with some stupid comment for me to blow up. I know things will get better but right now it feels like we're stuck in a hole. Life will never be the same again. I knew having another child would change everything I just never exoected things would change so drastically. I pray every night for guidance and answers but have yet to find any.