|
Happy 1st Birthday to our handsome little man Carter! We are so very proud of what you have accomplished in just one year! Stay strong my love and many many more birthdays shall come as we fight to kick SMA out of existance! I've learned so much from you and your brothers and I love you all more than you will ever know!
HAPPY BIRTHDAY DOODLE! Love , Mommy & Daddy 
Today was vent clinic with Dr Gelfand for both Lan and Carter! That means ALL DAY at the doctors clinic!! So much is accomplished on these days but they are some kind of stressful!
Both boys got new & different ventilators. Carter moved from Trilogy 100 to Trilogy 200 (more sensitive to trigger) and Landon moved from Puritan Bennett 540 to Trilogy 100. So far so good, Co2 is a little higher tonight so Im watching it and trying to blow it off, but he did eat way too much dinner and too fast and had a belly ache which Im sure is contributing! He actually went to bed with an upset tummy :-( Carter is doing great on his and even got a new custom trach tonight that he seems to love much better! I customized it with a straight flange bc like when Lan was little, they have triple chins, LOL, and the V-necks irritate them, so I like straight flanges, and I like flex-tends which are a bit longer to move the circuit farther away from the actual stoma, and allow them more flexibility with movement without tugging at the actual hole in their neck ;-( So anyways so far it seems to be working out....next is a DME swap. Boy these kids keep me busy! Finally home from teh hospital and sooo much to do! Wedding & birthday parties to plan! DME companies, equipment, and supplies to swap, Dr's appts, Carter has to be molded for new AFO's and a TLSO. Speech therapy evals, training new nurses, and on and on and on!!! NEVER A DULL MOMENT!! Not sure I'd have it any other way! Might be boring, granted I'd rather be busy doing fun stuff than that stuff, but ya know, whatever! It is what it is! I did get to meet a new CCHS family today at vent clinic! Go figure the mom already knew of us! LOL Hoping this website will help her with some resources, but I was able to help her with something she's long been trying to accomplish and that was teh blood results confirming her sons diagnosis and what his expansion repeat # is. I was like "you dont have that info after all this time?" "Hold on let em get Dr Gelfand!" Ha within minutes the results were in her hand! Its so crazy how simple things are and yet when some people dont know how to go about doing something they just dont do it instead of figuring it out!! Oh well, she got what she needed after 2 years! ;-) Off to bed I go, my kids are all finally asleep, meds, treatments, baths, trach changes, etc are DONE! 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 was not doing good today and had to be intubated! Trach surgery now has been moved up to tonight at 8pm :-(  Landon & Cullen going to a July 4th parade with Grammie & Mrs Ericka!!!
 Follow these amazing kids in their search for a cure! Learn from them, and watch them support each other in ways they dont even yet understand!!!
Wanna pitch in? Let us know! Theres sure to be lots you can do to help us help others!! |
Follow Us!Follow the Brothers on their life journey battling CCHS & SMA. Archives
February 2013
Categories |
RSS Feed