fantastical news.
just got the call from our pediatrician... well our nurse practitioner who I cant speak of highly enough. anyway... got the results!
asheys ck was 124!!! yay! that means he absolutely does not have MD!!! to give you a frame of reference, finnys level was something like 24,500...
wooo!!!! I actually got teary, im so happy ashey is ok...
we did have some celiac testing done, and it came back negative, but some of his other levels for something else were off and might have given a false negative for the celiac, but were gonna look into a little more testing to make everything is ok, and that is fine by me... we can totally handle some allergies if that's all we have to deal with.
apparently labcorp got word of my blog from yesterday... :)
Wednesday, August 14, 2013
Tuesday, August 13, 2013
waiting is the worst.
I am the worst when it comes to waiting for things.
like... I like online shopping because, really, who doesn't? but I absolutely hate waiting for the things to get to me, and I will not even pay double for whatever the heck it is that I want just to get it to me faster... so, I guess im impatient and cheap. and I fell like any and all medical testing should be done and reviewed within like two days, waiting for results is THE WORST.
anyway, both the boys had some bloodwork done last week... they were just doing a CBC on finny, and the drs office called me the next day to let me know that everything was fine. but ashey was having a celiac test done, a CBC, and a CK... and we still haven't heard anything about his labs. im starting to freak out, I know he was having a couple more tests done, but with our history, im really hating that we haven't heard anything yet. the CK test will tell us if ashey has MD as well, so I really would've appreciated hearing about that one like the same day we had his blood drawn.
we don't think that ashey has it, I would be absolutely shocked if he did, but just knowing that I finally bit the bullet and finally requested it... I don't like this whole waiting thing. the confirmation that my ashey boy is good would be fantastical.
come on labcorp... do a sista right.
like... I like online shopping because, really, who doesn't? but I absolutely hate waiting for the things to get to me, and I will not even pay double for whatever the heck it is that I want just to get it to me faster... so, I guess im impatient and cheap. and I fell like any and all medical testing should be done and reviewed within like two days, waiting for results is THE WORST.
anyway, both the boys had some bloodwork done last week... they were just doing a CBC on finny, and the drs office called me the next day to let me know that everything was fine. but ashey was having a celiac test done, a CBC, and a CK... and we still haven't heard anything about his labs. im starting to freak out, I know he was having a couple more tests done, but with our history, im really hating that we haven't heard anything yet. the CK test will tell us if ashey has MD as well, so I really would've appreciated hearing about that one like the same day we had his blood drawn.
we don't think that ashey has it, I would be absolutely shocked if he did, but just knowing that I finally bit the bullet and finally requested it... I don't like this whole waiting thing. the confirmation that my ashey boy is good would be fantastical.
come on labcorp... do a sista right.
Monday, August 5, 2013
a recap: the big day.
so we had our first big appointment last Thursday at the MD clinic at childrens! woo! it was a long day, we got there a little after 8 am and didn't get out til about 1 pm... that is like torture to a 2 year old.
we saw all sorts of specialists: neurology, pulmonology, physiatry, physical therapy, a nutritionist, and a rep for the MDA. crazy pants.
long story short, everything is pretty good. I guess hes pretty normal as far as two year olds with DMD go... one of his hands is a little tight, so we have to try to somehow work on stretching and loosening it. we have some other stretches we need to do daily to keep his hips, heel cords, and legs loose, but we already started doing that after his appt with physical therapy a couple weeks ago.
we did learn that sometimes kids with duchenne, have some similarities with autistic children, not that they necessarily have autism, but they are on the autism spectrum... and we have noticed that lately fink hates any and all shoes that are not his crocs. as soon as you put tennis shoes on him he immediately says that they hurt and tries to take them off. we don't normally fight him because it just isn't worth it, but it makes sense that it could possibly be a sensory issue. we did buy him a new pair of new balance tennis shoes yesterday... we put a couple different shoes in front of him and he picked these out so were hoping that will help. we put them on him and of course he fought, but after awhile he chilled out and didn't mention them again for probably 30 minutes or so, but then we let him run around for a bit and he seemed to forget about them again. so im thinkin it might work out if he starts out wearing them in short increments.
finks new kicks.
we did get some good news though; we were in the process of getting an appt for finny to get new orthotics for his feet/ankles, but after he was checked out last week, they decided that he didn't really need them. initially I was thinking, yay, we get to try to fight this baby to wear ankle braces and shoes everyday.. a baby that hates things on his feet. so im very happy that I don't have to torture that little sweet face on the daily.
oh and I learned another interesting little tidbit... when we got his DMD diagnosis I thought 'oh ok, then I guess the hypotonia makes sense.' but one of the specialists told me that the hypotonia has nothing to do with his MD. she said that it more likely has something to do with microcephaly. weird.
so we go back to the MD clinic November for his next check up, we have another MRI scheduled to check on his microcephaly and make sure everything is going ok with that... and well see a new neurologist (to follow his microcephaly) within the Childrens Network to keep all of his specialists together. and we go back to genetics in December to maybe get a bit more testing done to see if we can find any answers about his small sweet head.
funny little something:
after we had seen two of the specialists and had been there for about two hours, fin was getting super grumpy and restless... we knew we had some time before the next doc came by so the hubs took him on a little adventure to the coffee/gift shop area. they came back with a massive lollipop. but fin is quiet and happy, so im happy. theres a knock at the door. a man comes in, introduces himself to us, we say hello as he checks out our sticky mess of a toddler sitting quietly on the floor and tells us that he is the nutritionist. wade and I look at each other and I say 'of course you are.'
we saw all sorts of specialists: neurology, pulmonology, physiatry, physical therapy, a nutritionist, and a rep for the MDA. crazy pants.
long story short, everything is pretty good. I guess hes pretty normal as far as two year olds with DMD go... one of his hands is a little tight, so we have to try to somehow work on stretching and loosening it. we have some other stretches we need to do daily to keep his hips, heel cords, and legs loose, but we already started doing that after his appt with physical therapy a couple weeks ago.
we did learn that sometimes kids with duchenne, have some similarities with autistic children, not that they necessarily have autism, but they are on the autism spectrum... and we have noticed that lately fink hates any and all shoes that are not his crocs. as soon as you put tennis shoes on him he immediately says that they hurt and tries to take them off. we don't normally fight him because it just isn't worth it, but it makes sense that it could possibly be a sensory issue. we did buy him a new pair of new balance tennis shoes yesterday... we put a couple different shoes in front of him and he picked these out so were hoping that will help. we put them on him and of course he fought, but after awhile he chilled out and didn't mention them again for probably 30 minutes or so, but then we let him run around for a bit and he seemed to forget about them again. so im thinkin it might work out if he starts out wearing them in short increments.
we did get some good news though; we were in the process of getting an appt for finny to get new orthotics for his feet/ankles, but after he was checked out last week, they decided that he didn't really need them. initially I was thinking, yay, we get to try to fight this baby to wear ankle braces and shoes everyday.. a baby that hates things on his feet. so im very happy that I don't have to torture that little sweet face on the daily.
oh and I learned another interesting little tidbit... when we got his DMD diagnosis I thought 'oh ok, then I guess the hypotonia makes sense.' but one of the specialists told me that the hypotonia has nothing to do with his MD. she said that it more likely has something to do with microcephaly. weird.
so we go back to the MD clinic November for his next check up, we have another MRI scheduled to check on his microcephaly and make sure everything is going ok with that... and well see a new neurologist (to follow his microcephaly) within the Childrens Network to keep all of his specialists together. and we go back to genetics in December to maybe get a bit more testing done to see if we can find any answers about his small sweet head.
funny little something:
after we had seen two of the specialists and had been there for about two hours, fin was getting super grumpy and restless... we knew we had some time before the next doc came by so the hubs took him on a little adventure to the coffee/gift shop area. they came back with a massive lollipop. but fin is quiet and happy, so im happy. theres a knock at the door. a man comes in, introduces himself to us, we say hello as he checks out our sticky mess of a toddler sitting quietly on the floor and tells us that he is the nutritionist. wade and I look at each other and I say 'of course you are.'
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