smarty pants.

it finally happened!

we actually had an appointment with a specialist and came back with a totally normal diagnosis!  woohoo!  ha ha!

we had our visit with the pediatric developmentalist yesterday at childrens...  i made the appt awhile ago, before the big diagnosis was made.  i thought i was gonna be able to cancel it because i was thinking that now we know that he has muscular dystrophy, it kinda explains his few delays, but the mda clinic wanted us to keep the appt and just see how it went.

it went fantastically.  it was a team if three drs, one with me and two hanging out observing finny being totally cray.  long story short, they said that hes really smart for his age which is absolutely amazing when two of his 'issues' can sometimes cause intellectual disabilities...  and they said he had a great temprament and seemed like a completely normal toddler.  if they didnt know all of his history, they wouldnt have ever thought that he had any problems.

so finny got to play and chat with some fun drs, made a great impression and we were told that we dont have to see them again!  woohoo!  we have an entire month free of doctors visits!  as im typing this im realizing that i am likely jinxing myself, and my children will most definitely get a flu of some sort next month, forcing us to go to the doctor during our 'free month.' 

 

sweet happy baby playing at childrens.

big ideas.

so i dont know how many of you have a handicapped child, or know one that is, but either way, have any of you ever been to some of the 'everyone can play' playgrounds in the area?  ive taken my children to the two that are somewhat close, we have clemyjontri park in mclean, and claude moore 'fun for all' in warrenton.  both playgrounds are AWESOME.

there are ramps to all sorts of play structures that are wide enough for a wheelchair to fit through, as well as all sorts of activities that would be at the perfect height for those children, puzzles, musical instruments, race cars... they also have swings that look like kiddie swings, but are much larger so that all children can swing safely without fear of falling off.  there are also climbing structures and slides and such for the kids that arent handicapped.  and clemyjontri even has swings that are large enough that an entire wheelchair can roll right on, so if your child cant physically move from the wheelchair to the swing, they still arent left out. 

its so weird, i read about these playgrounds before we found out about finleys muscular dystrophy and absolutely loved that there were playgrounds where 'everyone can play.'  i even took the kids to the one in mclean, ashey had a blast!  finny still wasnt walking yet so...  :)  who knew that one day we would need a playground like this...

anyway...  we dont have anything like this in prince william county.  and im not really cool with that.  i decided i was gonna fight the county to build one, and of course i know things like this take a lot of time but i figured by the time i get it done might be when finny actually needs it.  so i started looking up county park planning meetings, and the pwc disability services board and when their open meetings take place and i figured i would just go and find out how to get started.  i have no idea how these things work.  i mentioned my big ideas to my mom, who mentioned it to someone, who mentioned it to someone...  you know how that goes.  long story short, theres a man that owns a large plot of land that wants to donate it to a good cause instead of selling it.  so my new idea is to create our own non-profit organization and build the playground ourselves. 

itll be a lot of work; of that, i am sure, but in the end it will be totally worth it.  i havent started anything yet, but my parents have a friend that is really familiar with this sorta thing thats gonna help me out...  then ill contact the other non-profit organiztion that actually builds the structures and then start fundraising.  so, if you know anybody that knows anybody that wants to possibly donate to a good cause, send them my way.  :) 

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. 

i need my happy back...

so im sitting here watching my kids actin tha fool...  and im wondering how long it will take for us to get back to normal.

everything is still so fresh in our minds; im still making appointments, and all of his specialists are just receiving the news so we're getting all the calls from them, so its almost impossible to not think about it.  and it makes me question everything...  did finny just fall for the 10th time this morning because hes only been walking for a few months, or did he fall because hes already in decline?  is he super cranky just because hes tired, or are his muscles aching because ive let him be too active all day?  is he crying in the middle of the night for me to help him adjust himself because he cant, or because hes just so used to me being there to do it for him?

besides all of the obvious reasons this disease is awful, the constant questioning is the worst.  youre given this diagnosis that is sad and scary and seems almost like your child was given an expiration date and all you can do is sit and wait.  theres no treatment options until they start to decline.  it seems so opposite from everything else in life, normally you would treat a sick person so they dont get worse, and then that treatment would be to prevent death.  muscular dystrophy has no cure. 

i know that there are things being done everyday to help find better treatments and even a cure, so in that way its better that we already know about finny, but since theres absolutely nothing we can do about it right now but think and think and wait, i almost wish we didnt know yet.  that wish is totally selfish and if it came down to it, i would definitely still want to know, its just hard to act like everything is normal, which is exactly what you have to do. 

i guess the things we do know are that we have to watch finny a little more closely so that when he gets tired, we make him rest.  hes not allowed to do any heavy lifting, which shouldnt be a problem for a 1 year old.  and the best exercises for him are aerobic, and swimming, swimming is supposed to be awesome for md patients.  and for myself, i had better get into better shape...  one day finny is going to really need our help, and this chubby mom is not at all confident that she will be able to help in the condition that her body is in. 

ok, now im sad.  so im going to do a little exercise suggested by star bobatoon in her book that im reading, i hate muscular dystrophy.  im going to list 5 things that make me happy.

1:  my great family.
2:  finny hugs & ashey cuddles.
3:  harry potter.
4:  wine & chocolate.
5:  art day with the babies.

feelin a little better now.  so im gonna go start on art day and make some rice krispie treats.  who can be sad when they have a delicious combo of crispy rice and mallows?  no one, thats who.

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. 

true king of hugdom.

my happy baby gives THE BEST hugs.  like seriously, if you hugged, or rather, let him hug you, you would have no choice but to agree that he is the true king of hugdom.  not that my big boy isnt also a fantastic hugger, he is just a three year that has a lot more important things to do these days that do not include hugging mommy.  legos are far more enticing than mom...

let me see if i can put into words the awesomeness that is a finny hug.

when you pick up this sweet little cuddly man, hes all warm and still definitely has that fantastic baby smell which of course is intoxicating.  if youve never smelled the baby smell, you are definitely missing out and you should go and seek out a baby today.  maybe you could go to babies r us or something and deeply inhale as you walk awkwardly close to a baby in a stroller...  it would be worth the mama bear glares that you will no doubt receive. 

BUT, back to the hugging talents of my sweet love.

hes warm, he smells delicious and once he gets up close to you, he curls his whole body around you.  he hugs with his entire being.  his arms wrap around your neck and shoulder and it is snug, not so tight as some overzealous toddlers that for some reason think that a hug should resemble a strangle in some way, but snug like you know he truly wants to be hugging you.  even his little hands are in on the action, extending the hug to the tips of his body.  and those slightly chubby little legs are wrapped around you as well.  and then finally, his head is nuzzled in so sweetly, you cant help but fall in love with him all over again and hope that this hug never ends. 

and finally, while youre standing there in love with this baby and his hug, and thinking that it couldnt possibly get any better, you realize that you were so wrong...  he makes the sweetest most adorable cooing sigh of content.  and if youre lucky, you might even get the sweet 'i yah you,' out of him.  i cant think of anything better.

i hope that i can always remember how these baby hugs feel. 

                                          finny cuddled in with aunt heather at the beach  :)

my kid is gonna rock the eff outta some md.

we finally got an aswer to all the craziness that has been going on in my poor happy babys life for the past year...  i cant believe this has all been going on for a year, sometimes it feels like so much longer (even though hes not even 2) and sometimes it feels like its been just a couple months.

wednesday night our geneticist called and said he had finally gotten in all the results of finnys bloodwork.  two different tests confirmed that he has muscular dystrophy.  we're not really sure what type he has yet, so theres a lot of anxiousness in the krade house until tuesday when we have an appointment with the neuromuscular center at childrens in dc.  im really hoping we get an idea of what were dealing with then, because the internet can be a scary place.  and not being absolutely positive that i knew exactly what md was, i definitely did some researching that led to a lot of crying and headaches.  terrible idea.

but due to some awesome words of encouragement from a fantastic group of ladies in a mom group im part of, i changed my attitude some and decided that we are gonna tackle this thing head on.  my kid is awesome, and hes going to continue to be awesome. 

my family is going to participate in a walk to raise funds and awareness of muscular dystrophy.  if youd like to join our team, or donate any amount, please check out fins to the left, our team for finny!

im sure ill have a lot more to say on all of this later, but right now im trying to keep my positive mood going on, so im not gonna get all deep into my thoughts...  but dont be surprised if theres a random midnight post of depression..