tipsy? maybe...

ok, so im pretty sure ive never written a blog post when I was slightly just a teeny bit tipsy...  but theres a first for everything, right?  ok...  im on my second glass of wine, but its been an emotional day and I feel like alcohol just affects you more when youre already emotional.  its like your regular barriers of whats appropriate to talk about just kinda fade away and you can talk about whatever uncomfortable or awkward thing you feel like talking about and you don't care who feels bad about it...    apparently, im a jerk drunk.  (im not really drunk...  maybe a tiny teeny bit) 

so if any of you are my facebook friends, then you may have noticed that the candle profile picture is back, and when its back it means theres been another death in our duchenne family.  and although I may have never physically met this family, there is still such a connection...  you already have such  a deep connection.  I don't think I know any other person in my 'real life' that has a child with a terminal illness...  and knowing something like that definitely connects you to someone else that knows something as terrible as this.  it is an awful thing to know.  I truly do not wish it on anyone...  back to the point, a 10 year old boy died today due to respiratory failure because he had the flu.  the flu.

 his poor little lungs weren't strong enough to handle the flu.  that is so scary.  it makes me question everything.  I want my son to enjoy everything he can in the time that he has here, but at the same time, I am now questioning my decision to let him go to the Christmas parade last weekend in the cold, and letting him play outside in the snow today...  just 20 minutes outside and he was exhausted.  all that gear to keep him warm made his muscles work twice as hard just to move, if he fell down he couldn't even get up on his own...

so whats more important?  letting him have as much fun as possible while he can, even though it might be shortening his time in some way, or protecting him to the max to keep him here as long as possible?  its such a tight rope walk...  you need to stay balanced...  you protect a little too much, you feel bad and need to correct by leaning toward the other side, let him do something that you maybe regret later, correct again by keeping him from something else.  I hate this.  I hate having to over analyze everything I do, everything I let him do... 

I realize Im rambling...  it happens when im upset.  I try really hard to stay upbeat, but sad news like the news we heard today just makes it so hard.  10 years is far too short a life to live...  im sure his mother and father are grateful for every moment of it, but im sure they also feel cheated...  shortchanged.  its not fair.  not that I wish I could trade situations with anyone, I would never trade one single moment ive had with finny, but I would do absolutely anything else to change our situation.  I would do anything to make him healthy. 

hug your kids.  and even if they've been absolutely crazy on this second snow day and youre ready to pull your hair out and send them back to school, give them a little extra love that 10 year old Nicholas Williams' parents cant give their son tonight... 

Nicholas...

sorry for the tipsy, depresso rant...  just needs to happen sometimes.  what else is the internet for?  ;)

one request.

I have a friend in the UK, her son also has duchenne.  he's older than finny, so they have a lot more to worry about right now than we do.  she recently wrote that they got some alarming news about his heart, and for those of you that don't know, heart conditions with DMD boys tend to be the reason they don't live as long as they could...  so any mention of a heart condition or problem definitely freaks a DMD parent out.

anyway, im trying to write something encouraging to her, I tell her that shes doing the best that she can for her son and that's all you can do...  and literally, that's ALL you can do.  theres nothing else.  I wanted to write 'itll get better soon,' 'keep up the faith and things will start to look up,' but you cant say any of that to a DMD parent, because things will not get better soon, and they wont start to look up.  in fact, things will only get worse.  as a parent of a child with duchenne, you will watch your child deteriorate right before your eyes and there is NOTHING you can do about it.

this isn't a 'pity me' post.  this is a request.  if youre reading this, you know us or you know someone else with duchenne and you stumbled upon my blog with its hundreds of duchenne related tags.  Either way, im pretty sure you are connected to DMD in some way. 

my request is this:  tell someone today about duchenne.  you can show them this video parent project muscular dystrophy vid or you can send them to my blog, or just tell them that there is a rare fatal disease out there taking the lives of young boys and theres still no cure.  we need more awareness.  we need a cure.

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.' 

truths.

so the hubs work switched insurance companies and I feel like ive been on the phone with them almost everyday.  feels like I just got used to the old one and now I have to learn a whole new system.  its kinda funny, im 31 years old, im married with two kids and the thing that has made me really feel like an adult is fighting my insurance company.  ha!  i mean, its not that bad...  i just know that for things that will be extra expensive, i have to call and find out what hoops exactly i need to jump through and when.  we don't want to be stuck with some outrageous bill because i did the steps out of order...  tricksy little insurances...

and keeping my insurance theme going, ive still been trying to get finny on Medicaid.  theres a bunch of different waivers and things you can apply for, some take years to get on, and some are much faster, and by much faster i mean like within a year...  its still the government.  but ive found out which one he needs now.  woohoo!

so anyway, i find the waiver application online and im going through it, filling it out, and i get to that part that is specifically about the person in the household that needs the supplemental medical insurance.  so basically it shows the names of everyone in the house and theres options below each name, 'disabled', and 'not disabled.' 

my first instinct was to click 'not disabled' for everyone in my family...  but then i had to really think about it.  and i know, it should seem totally obvious, my son has a disability, therefore he is disabled.  but it wasn't.  somehow it seemed like lying to say he was disabled.  yeah, he doesn't walk as well as other kids, he falls down a lot, and gets a little more tired than others, but that doesn't make him disabled.  but he is. 

i guess ive never had to actually think or say 'my child is disabled.'  it seems not so bad to say that he has a disability, like its just a part of him, not who he is... 

i did not like clicking that option.

f.u.dmd.

i know.  im lame.

and today, for some reason (couldn't possibly be related to my period being a week late) im really sad.  its duchenne awareness month and that is awesome.  but because the whole dmd family is doing such a great job at posting little blurbs and facts and reminders and super emotional thoughts about dmd, i feel like its been totally in my face lately.  and its not that i try to ignore it, and im definitely not in denial, i just have to operate in a way to keep my feelings in check.  and its been kinda hard to do that these past couple weeks. 

finnys falling a ton and i know ive shared my skepticism in knowing whether hes falling because its normal for a two year old to fall a lot, or if its something more and his decline is already on us...  i can just tell that he doesn't act like a normal toddler.  i didn't really notice it too often before, but we were at the playground the other day and finny willingly took quite a few breaks from playing.  what toddler stops playing, hangs out with mommy for awhile just watching the other kids play?  none that i know of.  i always had to drag ashey away from playtime, and heres his little brother giving himself time outs.  then we were at the store and he insisted on walking himself but he could only take about two steps before he fell, hed get back up and take a couple more and fall again.  i felt like crying right there in the store, but instead i picked him up and told him we were gonna go get the car while daddy and ashey paid for the groceries.  its awful to see your child struggle doing something as normal as walking.  the hubs tries to make me feel better and suggests that maybe his shoes were tripping him up, but just being with him 24/7, i see all the little things that make him just a little different than the other toddlers his age.  and it makes me really sad.

and you want to yell and scream about how unfair it is, but what good would that do?  id just be a crazy woman yelling about something that very few people can understand.  because as awesome and understanding as friends and family are, they have no idea what it feels like to know your child is going to die.  and i know, of course everyone dies, but my kid is gonna die way too young, and hes gonna have a tough time even getting to that point. 

and i knew that this diagnosis was going to change us, i mean, how could it not, but i find myself thinking really jerky thoughts sometimes.  at least i can recognize what im thinking is jerky and crappy so i guess that's good, but i don't like that i have to think twice about something before speaking.  i used to not really question myself too much because ive always been a pretty positive, happy person, but lately i really have to make sure im not about to say something mean.  like when people complain about something super trivial like its the end of the world...  i kinda wanna punch them in their face.  or when people post these inspirational sayings about giving up your cares and worries and they'll be taken care of, sometimes i wanna respond with something like 'obviously your child does not have a rare fatal disease that has no cure'  see what i mean?  i have total bitch thoughts going on through my head sometimes.  and its not all the time, its just been a rough day so blogtown gets to be the receiver of my ranty-ness. 

i hope that eventually ill come to better terms with everything and i wont have these little angry flare ups in my head, but i don't think thatll happen too soon.  i mean, weve only known for four months...  four tiny little months that feel like a lifetime.  its just so... consuming...  you can turn it off and ignore it for a few hours here and there with the help of distractions, but something always comes up that reminds you that its still there, lingering in the back of your mind, just waiting to step out of the shadows right before you fall asleep...

f.u.dmd.

not a carrier.

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.

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? 

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. 

dmd.

after a full year of questions, doctors visits, physical therapy and whatever else we've gone through with our happy baby, we finally have an answer.  id like to tell you that its something that with a little time and effort, our sweet boy will be fine.  but, unfortunately we were given a diagnosis that is incurable.

my son has duchenne muscular dystrophy.

duchennes is one of the most common and most severe of the different types of muscular dystrophy, but being a common form means that there is always new research and clinical trials being done to not necessarily cure the disease, but at least improve the quality of, and prolong life. 

i think we're still kind of shocked by the news..  its just so much to take in.  hes fine right now and i guess the current plan of action is to go back to the clinic in may where he'll meet with a team of doctors including a physiotherapist that will track where he is in terms of physical development so that we will be able to see where he's progressing and also when he starts to decline.  he'll also see a cardiologist that day to check his heart because your heart is a muscle so it also needs to be monitered.

i also had bloodwork done yesterday to see if im a carrier and the reason finny has dmd, if it turns out that i am, then we will have to get ashey tested just to make sure he doesnt also have it.  i dont think that he does, but we would much rather be sure.

its so weird to even think about...  you get married and have this plan in your head of what your life will be like, and when something comes along to completely change it, it feels like theres a million things to be sad about.  the fact that finnys life wont be normal and we are going to watch him get progressively worse as time goes by is almost unbearable.  no parent should ever have to go through that.  but also knowing that we wont have any more children is something that we have to deal with, and i feel selfish for even being sad about it.  finley will probably never have children.  and i have two awesome boys so i should feel so blessed, but when i pictured our lives before, i always pictured three kids, and of course i was so hoping that our third would be a girl.  theres just so many changes that we need to deal with right now.

sorry this is so rambly and awkardly written...  maybe later i will be able to more eloquently express my feelings, but currently, this i what you get.