ok, so im pretty sure ive never written a blog post when I was slightly just a teeny bit tipsy... but theres a first for everything, right? ok... im on my second glass of wine, but its been an emotional day and I feel like alcohol just affects you more when youre already emotional. its like your regular barriers of whats appropriate to talk about just kinda fade away and you can talk about whatever uncomfortable or awkward thing you feel like talking about and you don't care who feels bad about it... apparently, im a jerk drunk. (im not really drunk... maybe a tiny teeny bit)
so if any of you are my facebook friends, then you may have noticed that the candle profile picture is back, and when its back it means theres been another death in our duchenne family. and although I may have never physically met this family, there is still such a connection... you already have such a deep connection. I don't think I know any other person in my 'real life' that has a child with a terminal illness... and knowing something like that definitely connects you to someone else that knows something as terrible as this. it is an awful thing to know. I truly do not wish it on anyone... back to the point, a 10 year old boy died today due to respiratory failure because he had the flu. the flu.
his poor little lungs weren't strong enough to handle the flu. that is so scary. it makes me question everything. I want my son to enjoy everything he can in the time that he has here, but at the same time, I am now questioning my decision to let him go to the Christmas parade last weekend in the cold, and letting him play outside in the snow today... just 20 minutes outside and he was exhausted. all that gear to keep him warm made his muscles work twice as hard just to move, if he fell down he couldn't even get up on his own...
so whats more important? letting him have as much fun as possible while he can, even though it might be shortening his time in some way, or protecting him to the max to keep him here as long as possible? its such a tight rope walk... you need to stay balanced... you protect a little too much, you feel bad and need to correct by leaning toward the other side, let him do something that you maybe regret later, correct again by keeping him from something else. I hate this. I hate having to over analyze everything I do, everything I let him do...
I realize Im rambling... it happens when im upset. I try really hard to stay upbeat, but sad news like the news we heard today just makes it so hard. 10 years is far too short a life to live... im sure his mother and father are grateful for every moment of it, but im sure they also feel cheated... shortchanged. its not fair. not that I wish I could trade situations with anyone, I would never trade one single moment ive had with finny, but I would do absolutely anything else to change our situation. I would do anything to make him healthy.
hug your kids. and even if they've been absolutely crazy on this second snow day and youre ready to pull your hair out and send them back to school, give them a little extra love that 10 year old Nicholas Williams' parents cant give their son tonight...
Nicholas...
sorry for the tipsy, depresso rant... just needs to happen sometimes. what else is the internet for? ;)
Tuesday, December 10, 2013
Wednesday, December 4, 2013
wishful thinking.
update time:
since my procrastination and forgetful self has not updated and we have visited both the MDA clinic and the genetics dept again at Childrens, I will now enlighten you all with results of the previously mentioned appointments.
MDA clinic went well.. basically they check him out and as long as hes not declining, that's good. I know that sounds awful, but that's all we got for now, no cure = keep on keepin on until something bad happens. I am in the process of making a ton of follow up appts with cardiology (we see next week), bevhavioral development (we see in January), and neurology (still no appt, but our fantastic geneticist was going to put in a call last night, so I expect to hear from them today... that man has got pull with just about everyone). still no orthotics which is awesome since my baby man is not a fan of anything on his feet, and no physical therapy for now. I am supposed to take him back in for an evaluation soon, so well see...
Genetics also went really well. our dr is the best, and feels that finley is doing really well and reinforced that if he didn't know anything was wrong with him that he would think fink is a normal little boy. we basically went over all the history of everything that's ever happened ever... ugh, that's what it feels like anyway, if you could see my childs medical records, you would think he is an 87 year old man... it is far thicker than any 2 year olds medical file should be. we talked about possibly doing some more genetic testing to find out more about his microcephaly but since hes cognitively doing really well, our dr doesn't think that we need to necessarily to do more testing at the moment, if something changes, or one of our other one million specialists pushes it, then we can always come back, but for now were gonna let my little finny be normal for a minute. no more MRI's or blood work... as long as our upcoming three appts don't request it.
yesterday we also plotted all of finnys growth out on his chart so we could see how hes doing compared to previous visits, and the growth curve for his head measurements is actually going up! most kids I guess start to even out right about now and stay on the same track, finnys is movin on up, which is awesome. and in an effort to convince myself that finny is more normal than he seems medically, im thinking what if some higher power gave finny his giant birthmark and his tiny little head to force me to take him to all of these specialists... I mean, that's the only reason we got referred to genetics at all, if we hadn't been, we still wouldnt know that he has duchenne. I guess maybe we would've because im a crazy person, but I think it would've been a lot harder for me to convince anyone that something was wrong. so now that we have the DMD diagnosis, his little head is gonna grow, get out of that microcephaly range and it can be one thing to cross of the list. wishful thinking.
ok, so that's it for now. I gotta get my littles up and ready for school...
but a little cuteness for your morning... dr. finny
since my procrastination and forgetful self has not updated and we have visited both the MDA clinic and the genetics dept again at Childrens, I will now enlighten you all with results of the previously mentioned appointments.
MDA clinic went well.. basically they check him out and as long as hes not declining, that's good. I know that sounds awful, but that's all we got for now, no cure = keep on keepin on until something bad happens. I am in the process of making a ton of follow up appts with cardiology (we see next week), bevhavioral development (we see in January), and neurology (still no appt, but our fantastic geneticist was going to put in a call last night, so I expect to hear from them today... that man has got pull with just about everyone). still no orthotics which is awesome since my baby man is not a fan of anything on his feet, and no physical therapy for now. I am supposed to take him back in for an evaluation soon, so well see...
Genetics also went really well. our dr is the best, and feels that finley is doing really well and reinforced that if he didn't know anything was wrong with him that he would think fink is a normal little boy. we basically went over all the history of everything that's ever happened ever... ugh, that's what it feels like anyway, if you could see my childs medical records, you would think he is an 87 year old man... it is far thicker than any 2 year olds medical file should be. we talked about possibly doing some more genetic testing to find out more about his microcephaly but since hes cognitively doing really well, our dr doesn't think that we need to necessarily to do more testing at the moment, if something changes, or one of our other one million specialists pushes it, then we can always come back, but for now were gonna let my little finny be normal for a minute. no more MRI's or blood work... as long as our upcoming three appts don't request it.
yesterday we also plotted all of finnys growth out on his chart so we could see how hes doing compared to previous visits, and the growth curve for his head measurements is actually going up! most kids I guess start to even out right about now and stay on the same track, finnys is movin on up, which is awesome. and in an effort to convince myself that finny is more normal than he seems medically, im thinking what if some higher power gave finny his giant birthmark and his tiny little head to force me to take him to all of these specialists... I mean, that's the only reason we got referred to genetics at all, if we hadn't been, we still wouldnt know that he has duchenne. I guess maybe we would've because im a crazy person, but I think it would've been a lot harder for me to convince anyone that something was wrong. so now that we have the DMD diagnosis, his little head is gonna grow, get out of that microcephaly range and it can be one thing to cross of the list. wishful thinking.
ok, so that's it for now. I gotta get my littles up and ready for school...
but a little cuteness for your morning... dr. finny
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