alright ive been terrible at the updates...
we saw his neurologist last week and it was definitely confirmed that his head has not grown at all in six months... not good. but during the appt we focused more on the importance of finny getting in with the MD clinic, so i think he was a little reluctant to do anything without fink having been seen yet... so after some calls were made by dr. watkin, dr. rosenbaum, and our np, we got in with the nurse practitioner at the clinic.
our appt at childrens was yesterday. i had about two pages of questions written down to go over. and today im a little down... i guess i shouldve known that i wasnt going to hear anything that was gonna make it all better, but blegh, i dont know.
we went over the make up of his dystrophin gene and his deletion (3-11) and of course i had to ask the terrible question of the correlation of the placement of the deletion and the severity of his disease. and i guess typically the earlier in the sequence the deletion occurs, the more severe the case is... but she also said that sometimes there are rare occasions of someone that should have a pretty severe case but only presenting as someone with beckers muscular dystrophy which is the less severe form between the two. and cases of the opposite happening as well. so i guess not all hope is lost, and im sure ill get back to feeling the way i did before, it just feels like a blow everytime i find out something i wish i didnt know... thats a lie, im a knower, i need to know the information, and i hate that about me.
we also asked about the odds of having another child with md even though im not a carrier, previously i had read all sorts of different, conflicting things. yesterday they said 15-20% chance. and normally that doesnt sound like a terribly high chance when its in terms of things like weather. but i also know that i have been guilty of planning some spectacular outdoor events knowing that there was a 15% chance of rain, assuming that all would be well, but in the end we were all wet. which makes me a little scared to try again... but then i think about it, and during those events where everyone ended up wet, didnt we still have a great time getting to that point? its a really hard decision to make. not that we wouldnt love another child no matter what kind of issues they had, its just really hard thinking that we have a chance of having and falling in love with another child that we know is going to have a really tough life, and that tough little life isnt very long. the hubs and i need to think long and hard about this one...
we also touched on his microcephaly... i think the clinic thinks it would be in his best interest to repeat the MRI to compare to his last results. and they want this one to be performed at childrens. so well see about that. then she asked if anyone has warned us about watching out for signs of intracranial pressure... um no... what is that. she explained that since finnys head isnt growing, but his brain is growing normally, he could develop all this pressure because his brain is getting bigger and has nowhere to go. i dont know why, but i had never even thought about that. so now im slightly freaked out. and i feel a little dumb. i was thinking that if everything is fine with him mentally and his MRI was fine, then the microcephaly isnt a huge deal, but apparently its a little more dangerous than i thought.
so yeah, not a great day. i kinda want to cry. and im letting myself be sad right now while i write this because its really hard not to be, but once i get up from this computer im gonna slap a smile on this face and play with my kids, because thats what you have to do. i had no idea how hard being a parent would be, of course i never thought it would be easy, but the smallest act of putting on a happy face for your children while your head is going crazy with one million little thoughts and stresses is really tiring.
alright... time for happiness.
and go hug your parents.
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