So today is day 2 of our 2nd round of Biphosphonate (last round was in Feb 2012). Carter will get his 3rd day dose tomorrow and then I'm pretty sure, OUT THE DOOR WE GO!!
Carter will be moved to the Trilogy 200. I hope the new trach has paved us a smooth path for living at home instead of in the hospital! I miss Lan & Cully sooo much!
Anyways, all is well here at the hospital, so far no pain meds are needed and Carters handling the dosages well, not acting like he's aching at all! Hes been ALL SMILES! Cheesing from ear to ear! God I LOVE my kids! and I know everyones entitled to their own opinions but I guess I look at things very differently. Yes I've done alot of intervention in my children's lives to keep then not only here, but happy & well. Some ask why......? Why...because they are my babies, my heart, my everything in life. As long as my children are happy then its reassurance we are making the right choices for them! With respect to others personal decisions, you just cant judge what your actions would be if in that position, UNTIL YOUR IN IT!
Letting go of someone you love is hard. Letting go of YOUR BABY is unbearable. I see it this way...no matter how much we intervene, if the man upstairs thinks its time to bring someone home, HE WILL. Our bodies are only so much of a machine. You can keep fixing parts but at some point others can break down also. I believe in fixing a few parts rather than parking the car to rust. Our world is too smart, sometimes too smart for its own good. But if you know me, you know im a go getter, a hard headed, wont back down to anyone, wont take no for an answer, and sure as hell wont let someone stand in my way for what i believe in! Whether Im pushing for a dream house, new car, cute clothes, or to CURE A DISEASE! I'll run that path full force until the goal is reached! Sorry, thats just me! So when it comes to my kids, yes I'll intervene, and i'll research, and learn, and be by their side every second everyday I can. Because I'm a FIRM believer in "IF YOU GIVE THEM SOMETHING TO FIGHT FOR, THEY WILL!!! I ran into someone today, who simply asked was Carter, type 1 SMA. I replied yes only for them to smile instead of frown at me like most do, and then she said, "Yeah my brother is type 1 also! He's 25 years old!!"
Until today I have never heard of any type 1's over the persons that I know whom is 23! Everyday gets better. I'm holding on to that. And to those who "LOST' their battles early.....your battle was not LOST! Your plan was different... you left your mark somewhere as was planned. And your presence pushed the existing that much closer to the goal. Perhaps gone, but never forgotten...we still love you!
Okay enough venting for today! my baby's waking up, so we're g
Carter will be moved to the Trilogy 200. I hope the new trach has paved us a smooth path for living at home instead of in the hospital! I miss Lan & Cully sooo much!
Anyways, all is well here at the hospital, so far no pain meds are needed and Carters handling the dosages well, not acting like he's aching at all! Hes been ALL SMILES! Cheesing from ear to ear! God I LOVE my kids! and I know everyones entitled to their own opinions but I guess I look at things very differently. Yes I've done alot of intervention in my children's lives to keep then not only here, but happy & well. Some ask why......? Why...because they are my babies, my heart, my everything in life. As long as my children are happy then its reassurance we are making the right choices for them! With respect to others personal decisions, you just cant judge what your actions would be if in that position, UNTIL YOUR IN IT!
Letting go of someone you love is hard. Letting go of YOUR BABY is unbearable. I see it this way...no matter how much we intervene, if the man upstairs thinks its time to bring someone home, HE WILL. Our bodies are only so much of a machine. You can keep fixing parts but at some point others can break down also. I believe in fixing a few parts rather than parking the car to rust. Our world is too smart, sometimes too smart for its own good. But if you know me, you know im a go getter, a hard headed, wont back down to anyone, wont take no for an answer, and sure as hell wont let someone stand in my way for what i believe in! Whether Im pushing for a dream house, new car, cute clothes, or to CURE A DISEASE! I'll run that path full force until the goal is reached! Sorry, thats just me! So when it comes to my kids, yes I'll intervene, and i'll research, and learn, and be by their side every second everyday I can. Because I'm a FIRM believer in "IF YOU GIVE THEM SOMETHING TO FIGHT FOR, THEY WILL!!! I ran into someone today, who simply asked was Carter, type 1 SMA. I replied yes only for them to smile instead of frown at me like most do, and then she said, "Yeah my brother is type 1 also! He's 25 years old!!"
Until today I have never heard of any type 1's over the persons that I know whom is 23! Everyday gets better. I'm holding on to that. And to those who "LOST' their battles early.....your battle was not LOST! Your plan was different... you left your mark somewhere as was planned. And your presence pushed the existing that much closer to the goal. Perhaps gone, but never forgotten...we still love you!
Okay enough venting for today! my baby's waking up, so we're g
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