my sweet baby boy was diagnosed with microcephaly, hypotonia, and now duchenne muscular dystrophy. after searching for some support, i realized there werent many happy stories out there, so here i am to tell you the story of my happy happy baby.

Monday, July 29, 2013

just some nothings.

I don't have much to write about but I felt like blogging a bit... which is odd, who feels the need to write when they literally have nothing important to say.  weird.

no news on any front for us.  I got a message from social services yesterday to schedule the appt for finnys evaluation which is awesome, I really thought id be waiting and bugging the crap outta somebody for that.  thankfully I was wrong. 

im picking up lab orders for the boys this week, were having asheys ck levels checked just to give ourselves some peace of mind...  I would be shocked if he had elevated levels which would tell us we need to do some further investigating into the possibility that he also has MD, but after hearing a lot of stories lately of other non-carrier moms having multiple children with MD, I would just feel better knowing he definitely does not have it.  that should be fun...  taking a three year old to get his blood drawn.  ugh. 

oh!  we had an evaluation with physical therapy last week, and they determined that hes pretty good right now and we don't need to do anything but come back in 6 months for another check up.  woohoo!  we did go over some stretches that we have started doing daily with the finkelstien, and were waiting on an order for him to get new braces, but other than that...  pretty good appt.

still nothing from the MDA clinic at Childrens...  ill be calling them this week.  its pretty frustrating.  I was under the impression that wed have an appt by the end of july and here it is, the end of july and we haven't even made an appt for the future.  not gonna lie, I kinda wanna punch somebody about it.  and this is my 'angry week' if you know what I mean...  so they betta watch out!  ha!



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