rememeber when i said that we were gonna have a month free of doctors visits, well i definitely lied.
last week the big boy had some kinda stomach thing and vomitted for 48 hours with a fever. then blood in the vom, so i had to take him in. not fun. then sunday night the little one refused to sleep... at all. the second we layed him down, he immediately started to scream so i kinda thought ear infection. yesterday he had a pretty high fever, so i took him in and, da da da daaaa mom of the year right here... ear infection. hes on antibiotics.
BUT. we got some really great news yesterday too! the genetics lab called and i am not a carrier! woohoo! that means that it would be really unlikely that ashey has md. and that we could possibly visit the idea of more children... although there is still a 15% chance we could have another son with md. well talk more about all that when we got to his appt with the mda clinic in may.
as much as im happy that im not a carrier and all that that means, its kinda sad too... my poor kid has a weird genetic mutation that came outta nowhere, unfair. not that its fair that anyone ever has to have this diagnosis, but for his genes to just go rogue and do what they want. not cool genes, not cool.
http://mda.org/newborn-screening
so any of you new moms, soon to be moms, or even parents that want to be in the know... check out the link above to learn a little bit more about trying to get neuromuscular diseases on the newborn screening checklist. your baby could have it even if no one in your family has ever had it before. not that its something you want to worry about, but in terms of treatments... you never know, it might be better to know earlier one day. progress is being made on a daily basis.
Showing posts with label carrier. Show all posts
Showing posts with label carrier. Show all posts
Tuesday, April 9, 2013
Wednesday, March 20, 2013
thinking.
ok, so after my last terribly depressing post, i got some feedback, good feedback, and it got me thinking about some things in a different light.
a friend wrote me after reading my last post, and said that she had a girlfriend that had a baby with a disability that required more attention. when she had more children after the first, my friend asked her how she came to the decision to have more children knowing that her first would need more help than the others. her friend answered that while her first was part of her family, she wasnt the center of it. i thought that was a great way to look at things. even now, while nothing is really happening yet, i feel like ashe feels neglected. so i feel like i need to try to remember that saying. and im taking my big boy on a mommy ashey date tonight. :) but, besides reminding me that i need to make a conscious effort to carve out alone time for both boys, it has made me re-visit my original thoughts that we were done having children.
my same friend wrote that she used to be one of two children, and that now she is the only one and wishes she had more siblings. i feel like this friend is definitely pushing me to have another baby. :) or at least making me think about it.
not that were definitely going to go for it, were still waiting on my lab results to see if im a carrier... and if i am, i guess we may look into adoption, weve thought about it before so its not a huge jump. its a lot to think about... i absolutely love my little family more than anything, but at the same time, i dont feel like were done.
PS: if you have any fantastic ideas about good mommy son date nights, please forward them along! currently our plan is dinner and something else that is fun... ha ha! specific, right?
a friend wrote me after reading my last post, and said that she had a girlfriend that had a baby with a disability that required more attention. when she had more children after the first, my friend asked her how she came to the decision to have more children knowing that her first would need more help than the others. her friend answered that while her first was part of her family, she wasnt the center of it. i thought that was a great way to look at things. even now, while nothing is really happening yet, i feel like ashe feels neglected. so i feel like i need to try to remember that saying. and im taking my big boy on a mommy ashey date tonight. :) but, besides reminding me that i need to make a conscious effort to carve out alone time for both boys, it has made me re-visit my original thoughts that we were done having children.
my same friend wrote that she used to be one of two children, and that now she is the only one and wishes she had more siblings. i feel like this friend is definitely pushing me to have another baby. :) or at least making me think about it.
not that were definitely going to go for it, were still waiting on my lab results to see if im a carrier... and if i am, i guess we may look into adoption, weve thought about it before so its not a huge jump. its a lot to think about... i absolutely love my little family more than anything, but at the same time, i dont feel like were done.
PS: if you have any fantastic ideas about good mommy son date nights, please forward them along! currently our plan is dinner and something else that is fun... ha ha! specific, right?
Tuesday, March 12, 2013
counting sheep.
there are so many terrible things that go along with an awful diagnosis that isnt even the diagnosis iteself. tiny little weird thoughts wiggle their way into your head when youre just laying down to go to sleep, and then of course push sleep off for a few more hours.
my current sadness thought is pretty bad. in more ways than one...
of course ive been watching finny like a hawk and trying notice every little thing... is he walking ok, how many times hes fallen down, does he seem tired? and then i start to wonder how long we have until he starts his decline, and then worse still, how long will he last once the decline begins. see, i told you, bad stuff... so i go through all those thoughts last night and i feel super sad, and then i start thinking about ashey and how sad he will be... hell be all alone. i mean, hell have us, but he wont have his 'baber.' my boys are so close in age, and without a doubt, love each other so much. and i cant imagine how awful it would feel to lose a sibling. i cant imagine losing one of mine. when i heard about the oil rig explosion off the coast of louisianna a few months ago, i thought i was going to vomit, and all i could do was pray that it didnt happen to be one my brother was on. and when ashey goes through that, hell be all alone, his baber wont be there to help him through the pain.
and then even the possibility of having another is not really there. of course my number one concern is finny right now, and when i think about how much help he will need in the future, i think it would be unfair to have another baby. but even if we decided that it was somehow manageable, then theres the difficulty of actually getting a healthy baby. we're still waiting on bloodwork to see if i am the carrier, but even if im not, there is still the chance that while im not the primary carrier of the genetic mutation, the mutation or deletion happened when my eggs were being formed so we could have another with DMD. the genetic counselors said there were all sorts of things they could do like in vitro, and only implanting eggs that have already been tested, or only implanting girls... i dont even want to think of the cost involved with all of that. especially wondering about finnys medical needs and expenses in the future.
i totally wish counting sheep actually worked.
PS: i dont plan on all my posts being super depressing... its just right now. they should perk up soon. im trying to be really honest about everything im feeling, maybe it will be exactly what someone else in my situation needs to see to validate their own crazy. and im hoping to look back at these posts one day and see just how far weve come... hopefully.
my current sadness thought is pretty bad. in more ways than one...
of course ive been watching finny like a hawk and trying notice every little thing... is he walking ok, how many times hes fallen down, does he seem tired? and then i start to wonder how long we have until he starts his decline, and then worse still, how long will he last once the decline begins. see, i told you, bad stuff... so i go through all those thoughts last night and i feel super sad, and then i start thinking about ashey and how sad he will be... hell be all alone. i mean, hell have us, but he wont have his 'baber.' my boys are so close in age, and without a doubt, love each other so much. and i cant imagine how awful it would feel to lose a sibling. i cant imagine losing one of mine. when i heard about the oil rig explosion off the coast of louisianna a few months ago, i thought i was going to vomit, and all i could do was pray that it didnt happen to be one my brother was on. and when ashey goes through that, hell be all alone, his baber wont be there to help him through the pain.
and then even the possibility of having another is not really there. of course my number one concern is finny right now, and when i think about how much help he will need in the future, i think it would be unfair to have another baby. but even if we decided that it was somehow manageable, then theres the difficulty of actually getting a healthy baby. we're still waiting on bloodwork to see if i am the carrier, but even if im not, there is still the chance that while im not the primary carrier of the genetic mutation, the mutation or deletion happened when my eggs were being formed so we could have another with DMD. the genetic counselors said there were all sorts of things they could do like in vitro, and only implanting eggs that have already been tested, or only implanting girls... i dont even want to think of the cost involved with all of that. especially wondering about finnys medical needs and expenses in the future.
i totally wish counting sheep actually worked.
PS: i dont plan on all my posts being super depressing... its just right now. they should perk up soon. im trying to be really honest about everything im feeling, maybe it will be exactly what someone else in my situation needs to see to validate their own crazy. and im hoping to look back at these posts one day and see just how far weve come... hopefully.
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