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.

Tuesday, May 7, 2013

finky cinky de mayo.

my sweet happy boy is the big t.w.o!  yay!!! 

i think he had a pretty spectacular birthday week...  thats right, we're celebrating 'weeks.'  i figure since he doesnt get the same number of birthdays that everyone else expects/hopes to have, then the only fair thing to do is to extend the celebrations that he does have, hence birthday week.  so we had mini fun days leading up until sunday when we had an actual party for him, yo gabba gabs theme and a moon bounce.  he had a great time.  as did we...  in honor of the littles bday party coinciding with cinco de mayo, we had a little corona and lime action for the adult party goers.  good times had by all. 

 
 
 
we also had his 2 year well check yesterday which was not nearly as fun as the shenanigans on sunday...  of course hes still the cutest thing that anyone had ever seen...  ha!  his height and weight are about on track with where hes always kinda been, about average height, a little under on the weight.  but his poor tiny head has not grown AT ALL in the past six months.  that is crazy, 6 months is a quarter of his little life.  so in about 8 minutes, when they open, ill be calling his neurologist to try to get him back in there asap.  i kinda feel like a jerk because i cancelled his last check up with them, operating under the assumption that we would have seen or would be seeing very soon his new neuro with the muscular dystrophy team.  but since we keep getting appts and then having them cancelled, i have no idea when we'll actually get in with them, so....  we're going back to the o.g.  (original gangsta = dr terry watkin)  i also have to make an appt for him to see a pediatric cardiologist.  another specialist we should be seeing with his new team of drs but since we're playing the waiting game, the nurse practioner at our peds office that we see (jessica hamman, who is absolutely awesome btw) suggested that we just go ahead and make an appt to get his heart checked out, to at the very least give ourselves some peace of mind.  he has a murmur which i think normally they wouldnt worry too much about but with his muscular dystrophy we just wanna get it checked out to make sure everythings ok.  so we will see...  

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