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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