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?  ;)

wishful thinking.

update time:

since my procrastination and forgetful self has not updated and we have visited both the MDA clinic and the genetics dept again at Childrens, I will now enlighten you all with results of the previously mentioned appointments.

MDA clinic went well..  basically they check him out and as long as hes not declining, that's good.  I know that sounds awful, but that's all we got for now, no cure = keep on keepin on until something bad happens.  I am in the process of making a ton of follow up appts with cardiology (we see next week), bevhavioral development (we see in January), and neurology (still no appt, but our fantastic geneticist was going to put in a call last night, so I expect to hear from them today...  that man has got pull with just about everyone).  still no orthotics which is awesome since my baby man is not a fan of anything on his feet, and no physical therapy for now.  I am supposed to take him back in for an evaluation soon, so well see...

Genetics also went really well.  our dr is the best, and feels that finley is doing really well and reinforced that if he didn't know anything was wrong with him that he would think fink is a normal little boy.  we basically went over all the history of everything that's ever happened ever...  ugh, that's what it feels like anyway, if you could see my childs medical records, you would think he is an 87 year old man...  it is far thicker than any 2 year olds medical file should be.  we talked about possibly doing some more genetic testing to find out more about his microcephaly but since hes cognitively doing really well, our dr doesn't think that we need to necessarily to do more testing at the moment, if something changes, or one of our other one million specialists pushes it, then we can always come back, but for now were gonna let my little finny be normal for a minute.  no more MRI's or blood work...  as long as our upcoming three appts don't request it.

yesterday we also plotted all of finnys growth out on his chart so we could see how hes doing compared to previous visits, and the growth curve for his head measurements is actually going up!  most kids I guess start to even out right about now and stay on the same track, finnys is movin on up, which is awesome.  and in an effort to convince myself that finny is more normal than he seems medically, im thinking what if some higher power gave finny his giant birthmark and his tiny little head to force me to take him to all of these specialists...  I mean, that's the only reason we got referred to genetics at all, if we hadn't been, we still wouldnt know that he has duchenne.  I guess maybe we would've because im a crazy person, but I think it would've been a lot harder for me to convince anyone that something was wrong.  so now that we have the DMD diagnosis, his little head is gonna grow, get out of that microcephaly range and it can be one thing to cross of the list.  wishful thinking.

ok, so that's it for now.  I gotta get my littles up and ready for school...

but a little cuteness for your morning...  dr. finny

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.

thought purge.

now that we're not going to the dr constantly to check on this or that with finny and its not absolutely in our face all the time, I feel like things have kinda gotten back to normal.  its not on my every thought, and sometimes I even forget that theres anything wrong with him.  hes just such a sweet fun kid, he seems totally normal.

but then there are days like yesterday.  for some reason that nasty little part in my brain that makes me have sad, awful thoughts was working overtime...  I don't know why, things have been going well, he hasn't had any major falls, he hasn't seemed overly tired.  but maybe that IS why.  I let myself forget and some jerk part of me wanted me to remember, and it was definitely out to get me with a vengeance.

it felt like any random thought having nothing to do with his disease, or even finny himself brought my thinking back to him and how he wouldn't ever get to experience that, or that he wont be around for this...  its awful.  im pretty sure I was on the verge of tears no less than 13 times yesterday.  and no matter how down you feel, you gotta plaster that smile on your face...  it doesn't help anyone if youre sad all day.  not you, not your kids, no one.  you gotta be happy happy happy.

 

 

I don't even know what my point was in this post, I guess I just needed to ramble...  and sometimes the rambling helps get those thoughts outta there, and since ive already cried once today, before 6 am, apparently a thought purge was needed. 

 

I hate that my son is sick.

I hate that I feel like its my fault.

I hate that hes gonna miss out on so much.

I hate that we have to watch him get worse.

I hate duchenne.

 

BUT...

I love that little finny more than anything.

I love that we were blessed with him, I truly believe that no matter what, he was meant for us.

I love his sweet nature.

I love that he is on the go ALL THE TIME, he doesn't let anything slow him down.

I love his hugs so so much.

I love the relationship between ashey and finny.

I love that we have such a great support system.

 

ok I feel better now, so if you read this, don't go hugging me or giving me that look...  you know the one...  I just needed to vent.  now im gonna go get my boys dressed because I promised to take them to get donuts before school.  and those sweet little faces covered in frosting will definitely make me smile. 

 



happy unicorns.

so this weekend the sis and I took the boys out to eat...  we got there around 4ish, so lunch rush was well over and we still had a bit of time before the Saturday date night craziness started.

when we got there, the restaurant was almost empty, which is definitely a good thing when youre taking toddlers out.  anyway, my kids were actually being good, which is not necessarily always the case.  im not saying there were angels, because lets be honest, theyre still toddlers and toddlers are not known for their maturity and patience.

so the finkelstein is super happy and definitely expressing his happiness, in such ways as greeting everyone that walked into the section where we were sitting, laughing (probably a little too loudly), singing with his brother (again maybe too loudly) etc.  and while I know he was probably being too loud, it was also happy noises...  he wasn't screaming and crying, he wasn't having a temper tantrum, he wasn't throwing food everywhere, he was just really happy.

when were almost done with our dinner, a couple at a table near us is almost done as well, our waiter asks them if theyd like to see the desert menu and the woman says (maybe too loudly) that she cant stand that kid one more minute, clearly indicating my happy child. 

at first I was kinda embarrassed, I guess just my gut reaction, but then the more I thought about it, I kinda wanted to punch her in the face.  and I wish that I had said something to her...  who doesn't like to hear happy baby giggles?  I would totally understand her irritation if he had been having a fit or something, because I cant stand that either, and Im a mom of two toddlers.  but complaining about a happy kid?  and once I got angry I totally wanted to pull the special needs card just to make her feel like a jerk...  not that fins special needs really do anything to make him be a little extra loud, BUT my kid does deserve to be happy and to be able to express his happiness, and he shouldn't have to feel bad about it. 

so of course I started thinking and over thinking, and I just think its crazy that people expect things to be perfect and just the way they want them to be at all times.  life is not perfect.  things happen beyond your control and the way you react to them is what shapes how your day, your week, or even your life go.  she could've easily turned her head and just said hello to finny, his smile is infectious, she would've smiled back and then maybe she would've been a little more tolerant of his happy overzealousness.  you know, I could totally cop an attitude about the hand we were dealt with life and finnys disease, but what good would that do?  id be a grump, id be a bad mom and wife, and it would be my own fault that im not happy.  but sometimes, if you just force yourself to smile, things don't seem quite as bad.  im not saying im happy unicorns and optimistic rick all the time, but I do try.  and I will say that if life is some sort of competition, on Saturday I totally won. 

                                                                         totally won.

werk it.

clearly its been a slow couple months in the krade house since I haven't updated anything since august... 

in reality, weve been super busy and im just a slackery slacker pants that has not taken the time to write anything about my sweet boysicles.

medically everything has been good!  finny had his MRI last month and everything looks good, so unless something drastic happens I think well be MRI free for at least a couple years.  woohoo!  we go back to the MD clinic next month for a check up, but im not expecting any new news... 

all other parts of life have been crazy!  I got a job!  im teaching preschool where I enrolled ashey, finnys there too of course.  it was pretty rough in the beginning, as I had been preparing myself to be apart from ashe for 3 half days a week and thinking id have all this one on one time with the finkster...  so it was a big jump to being away from them both 5 half days a week!  but its really been awesome, finnys teachers are so great with him, everyone knows about his issues, and if they are ever worried about anything they just bring him straight to my classroom to check him out, I really cant think of a better situation...  aside from winning the lottery, getting to stay home with my boys again and hiring private tudors and then somehow also getting them to make friends while im around without seeming like the weirdest creep hover mom of life...  ha!

but the kids have adjusted really well, ashey is still super shy if any new adult comes around, but he loves his teachers, finny definitely is a fan of everyone in his class too, and I absolutely love that they quietly sing their little songs under their breath while theyre coloring or checking out a book or something... it. is. so. cute.

ok so theres my quick update before I have to start the morning rush of getting two toddlers dressed and ready and praying that they stay somewhat clean while im getting myself ready, and then hoping that we make it to school without either one wiping toothpaste, food, or boogs on my shirt. 

fantastical news.

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...  :)

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.

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.' 

vicious cycling.

ok the last post should've posted some time last week... 

update:  we have an appt at the MD clinic on Thursday!  da da da daaaaa!!!!  so check back Friday-ish to find out how that went...  I really have no idea what to expect.  but they did keep trying to make his appt like it was a follow up, I had to say quite a few times that it wasn't really a follow up because we have never seen any of the drs other than the nurse practitioner.  I think the dude was confused because we have been there twice but haven't seen any of the specialists...  so well see how it goes!

we have some other sad stuff going on at the moment...  but ill write about that later.  nothing to do with the kids though, so dont worry!  but dont you hate when youre in a down mood and all you want to do is listen to melancholy music which only further deepens your sadness?  ugh...  vicious cycles and their vicious cycling ways...

the word melancholy reminds of the movie 'melancholia'  super weird...  just fyi...

just some nothings.

I don't have much to write about but I felt like blogging a bit... which is odd, who feels the need to write when they literally have nothing important to say.  weird.

no news on any front for us.  I got a message from social services yesterday to schedule the appt for finnys evaluation which is awesome, I really thought id be waiting and bugging the crap outta somebody for that.  thankfully I was wrong. 

im picking up lab orders for the boys this week, were having asheys ck levels checked just to give ourselves some peace of mind...  I would be shocked if he had elevated levels which would tell us we need to do some further investigating into the possibility that he also has MD, but after hearing a lot of stories lately of other non-carrier moms having multiple children with MD, I would just feel better knowing he definitely does not have it.  that should be fun...  taking a three year old to get his blood drawn.  ugh. 

oh!  we had an evaluation with physical therapy last week, and they determined that hes pretty good right now and we don't need to do anything but come back in 6 months for another check up.  woohoo!  we did go over some stretches that we have started doing daily with the finkelstien, and were waiting on an order for him to get new braces, but other than that...  pretty good appt.

still nothing from the MDA clinic at Childrens...  ill be calling them this week.  its pretty frustrating.  I was under the impression that wed have an appt by the end of july and here it is, the end of july and we haven't even made an appt for the future.  not gonna lie, I kinda wanna punch somebody about it.  and this is my 'angry week' if you know what I mean...  so they betta watch out!  ha!

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.

hug your rents.

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.

finky cinky de mayo.

my sweet happy boy is the big t.w.o!  yay!!! 

i think he had a pretty spectacular birthday week...  thats right, we're celebrating 'weeks.'  i figure since he doesnt get the same number of birthdays that everyone else expects/hopes to have, then the only fair thing to do is to extend the celebrations that he does have, hence birthday week.  so we had mini fun days leading up until sunday when we had an actual party for him, yo gabba gabs theme and a moon bounce.  he had a great time.  as did we...  in honor of the littles bday party coinciding with cinco de mayo, we had a little corona and lime action for the adult party goers.  good times had by all. 

 

 

 

we also had his 2 year well check yesterday which was not nearly as fun as the shenanigans on sunday...  of course hes still the cutest thing that anyone had ever seen...  ha!  his height and weight are about on track with where hes always kinda been, about average height, a little under on the weight.  but his poor tiny head has not grown AT ALL in the past six months.  that is crazy, 6 months is a quarter of his little life.  so in about 8 minutes, when they open, ill be calling his neurologist to try to get him back in there asap.  i kinda feel like a jerk because i cancelled his last check up with them, operating under the assumption that we would have seen or would be seeing very soon his new neuro with the muscular dystrophy team.  but since we keep getting appts and then having them cancelled, i have no idea when we'll actually get in with them, so....  we're going back to the o.g.  (original gangsta = dr terry watkin)  i also have to make an appt for him to see a pediatric cardiologist.  another specialist we should be seeing with his new team of drs but since we're playing the waiting game, the nurse practioner at our peds office that we see (jessica hamman, who is absolutely awesome btw) suggested that we just go ahead and make an appt to get his heart checked out, to at the very least give ourselves some peace of mind.  he has a murmur which i think normally they wouldnt worry too much about but with his muscular dystrophy we just wanna get it checked out to make sure everythings ok.  so we will see...  

pink is for girls.

yesterday i took my littles to the earth day thing they had going on in old town yesterday, there were some fun vendors with upcycled crafts, music, a bounce house, and of course the farmers market was going on..  so a fun little day.  i got this sweet tiny vase from a fantastic crafter that you can find at http://www.etsy.com/shop/ebm126 you should definitely check out her stuff, we also picked up a few of her domino magnets.

we also came across a tupperware vendor that was selling some sale items.  i was actually looking for a tupperware cup for the big boy so i decided to look through some of their stuff.  i found what i was looking for in pink, which was fine because asheys favorite color is pink.  but i kept looking through just to see what else they had; while i was looking, the daughter of the vendor says 'oh, i think thats the only color we have in that.'  i tell her thats fine because pink is his fav anyway.  so then the girl (who is probably between 19-22) says to her mom, 'mom, this lady wants to buy this pink cup for her son here.'  im not sure why she needed to specify who i was buying the cup for, but then the mother looks at me with this face, and her daughter immediately says 'mom, keep your mouth shut.'  absolutely awkward.  i say, 'its fine, he loves pink.'  then the mother says, still with the judgy mcjudgerson look on her face, 'well, what does his father think about that?'  im sure i had a pretty snotty expression on my face when i told her that his daddy is fine with it, and that our son is allowed to like whatever he likes and love whatever he loves.  i almost didnt want to buy the cup after all of this just because i didnt want her to have my money, but i did buy it because my son did want it, and i didnt want her to think that she had changed my mind about letting my son use a pink cup.  i was just shocked that we were being judged over the color of a cup, and so openly... 

the offending cup.

it was sad, not for me because i dont care what she thought.  but sad for her that she felt she could make this assumption about the person i am based on what i allowed my son to have, and the very thing she looked down on is probably one of the things im most proud of.  she probably thought that im not doing my job right in not teaching my son that pink is for girls.  but i think im doing a great job of letting him know that he can like whatever he wants, and im totally cool with it.  i absolutely love that im raising this awesome and unique kid that is and will continue to be an amazing brother to his sweet baber. 

two awesome bros.



three things.

i have tons to write about today, so get ready...  ha ha!

1.)  we had an absolutely fantastical weekend!  a whole gang of us (19 strong) headed down to virginia beach for the MDA walk.  we had friends and family...  all the way from Mississippi join in the fun to walk for my sweet sweet fennel seed.  we got an award for raising over $1000 (we raised over $5000), and we got an award for the first runner up for the most money raised, and we did it all in just 10 weeks!  Way to go 'fins to the left'!

it was almost overwhelming to have so many people travel to be with us for the weekend, im sure i did not do an adequate job of letting everyone know just how much it meant to me.  but, truly, i dont know if ive ever felt so much love.  having so many people come together to support my family, my baby, one of the best feelings...  with all of this love and support, i have no doubt that we will rock the eff outta some md.  and md better watch out...  it messed with the wrong family.

 

2.)  and some less awesome news.  we were supposed to have our first appt with the md clinic in may, and i got a call the other day that it was cancelled...  theyre currently trying to fill some vacant positions, so we are on the waiting list for june with no guarantees that well get in.  so im currently trying to get us in with Hopkins in Baltimore, ive been back and forth with them a few times, hopefully this will work.  im just really worried that we havent even been seen yet and were already getting shuffled around, and i hate that its starting out like this...  i dont want finny to be overlooked because no one really knows where were coming from or whats been done, or what weve been told.  ill just have to push buttons... 

 

3.)  and the last thing i want to talk about is the importance of being your childs best advocate.  after having a conversation with someone i love that is also going through some health issues with her son, i realized, not for the first time, that women are often brushed off as 'just being moms' when it comes to our concerns for our children.  now, im not saying i wasnt sometimes a crazy person when i first brought home my sweet little 5 pound 10 ounce baby ashey...  i was.  but, once you get in the swing of things, you know whats normal and whats not, and you also have this weird mothers instinct and you know when somethings wrong with your child.  so if you truly believe that something is just not right, then you have to do whatever you need to do to make sure you get the answers youre looking for.  people might think youre crazy, or being over protective, or even seeking attention, but who cares about them?  and if youre wrong about the issue, thank god!  but at least you cared enough to fight for your child.  end rant.

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.

eb.

the happy baby had a pretty good weekend. 

we had a glow in the dark easter egg hunt the night before easter at meme and pop pops so, of course that was awesome.  then when we got home, the big boy thought he spotted the easter bunny in some bushes so obviously we had to do some investigating and exploring around the neighborhood, we heard him a couple times and thought we had him cornered, but he got away... 

but before the glow in the dark hunt, we dyed eggs with the meme and pop pop and finny had a first!  we finally heard an unsolicited 'i love you,' from him.  so cute!  but, he said it to his cars which took a little of the sweetness out of it... ha ha! 

oh, and remember when i said we had an entire month free of drs visits?  i totally lied.  we were supposed to have had an appt with finnys neurologist yesterday.  but in my defense, i thought we cancelled that thing when finny had to go in for his eeg.  apparently we did not.  so after some back and forth between myself, the receptionist and the the dr, we decided that we dont need to go back in for a follow up because everyone is in agreement that the neurologist at the mda clinic will be able to follow finnys progress...  so well see how that goes. 

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..

baby mummy.

we had a test! 

about a day or two after our appt with neuro, we got a call to set up the ambulatory eeg, which is not a fun thing to go through...  especially with a 1 year old, and probably the worst tech to ever work with children ever...  ever.  tomorrow will be one week since we went and he still has adhesive that is just refusing to come off and weird bruises were the tech drew on his head with what looked like an overhead projector pencil...  dont act like you dont remember those...

anyway, she attached something like 25 wires to his head, these were connected to a little box and then she plopped that box on the top of his head and gauzed him up like a baby mummy.  then there was a thick cord that came from that box to a bigger box that he had to wear in a backpack.  and once we got home, we had an even bigger box, like a shoe box for boots but with like ten pair of boots somehow squeezed inside.  the big box had to be plugged into the wall and connected to the medium sized backpack box, it also had a camera on top of it that i had to try to keep on the baby...  super easy.  blah.  it was terrible, he kept pulling at his head, pulling at the cords, he hardly slept, and everything on the top of his head was on the side of his head when he got up the next morning.

heres a pic of my baby man with his gear on, and i even caught his little 'episode'

 

BUT.  we got the results and its not seizures!  yay!  but that just means its some sort of other behavioral tic that needs to be addressed, im really hoping its just some weird thing that hes decided to do for no apparent reason and nothing neurological related to his microcephaly. we have an appt in march with a pediatric developmentalist so i guess we will see then.  we're still waiting on the results from the bloodwork ordered by the geneticist...  theres a lot of waiting.

silly baby?

alright so we have a new symptom...

last week my little one started doing a silly little thing.  he learned to roll his eyes.  well, thats what i thought at first anyway. 

we were just playing and being silly and my little bug rolled his eyes at me, almost as if to say 'oh mooom...'  then the longer i thought about it, i wondered if one year olds understand rolling their eyes in a sarcastic or silly way.  i had no idea.  but then it kept happening over and over again, even when he was playing all by himself and had no idea i was even watching him.  he would just pause and slightly tilt his head and roll his eyes up and to the direction that he was tilted.  after 4-5 seconds, he would go right back to playing, or walking, or eating... 

a few days after it started, he had about 20+ episodes in one day.

so i happen to be writing his genetics dr about something else and decided to just mention it and see if it was something i should be concerned with or if maybe im just being super observant to anything that could be neurological.  he calls my house at 8:45 from his home.  apparently it is something i should be concerned about.  he tells me to call his pediatrician and neurologist first thing the next morning and that if i dont get any response to call him back and he will light a fire to get things rolling, which didnt need to happen because the neuro said he wanted to see us in the next couple days. 

the day after i made all the calls, my sweet baby continued with his eye rolling, but took it a step further when he rolled his eyes all the way back in his head, i could only see the whites, while his eyelids fluttered rapidly.  this happened about 5-6 times right in a row, and thankfully hasnt happened again since.  it was not something id like to see again anytime soon.

so yesterday we got in to see the neurologist and were basically just told that we have to do more tests, which isnt a big surprise.  once everything gets approved by insurance, my little man will go in for an extended eeg.  we dont have to stay in the hospital, but im wondering how well this is going to go... he doesnt even like to wear hats.  but i guess its the only way to determine if these episodes are mini seizures, or if they are more like a tic... 

ugh.  more tests.  more waiting. 

bloody tests!

im the worst blogger in the history of blogdom.

here i start a blog for all those moms and dads whose children have been diagnosed with similar things to mine so that maybe one of them can come across it and actually see good news.  ive found that most blogs started due to a childs health issue seem to just fade off once the child has gotten better, been given a good diagnosis, or any other multitude of reasons.

so much has happened since i last wrote.

we went on an awesome vacation!  two weeks in florida before the dreaded MRI for the baby.  honestly, i wasnt even worried about the MRI itself, i was more concerned with the whole anesthesia thing...  but all went well.  he cried a bit when they put the face mask on him, but out he went, and he was awake before they even got him into the recovery room.  and by that afternoon, he was walking around and playing like nothing out of the norm had even happened. 

next we went back to the neurologist to go over everything, fantastic results!  his brain looks totally normal, so my happy happy baby is one of the few with microcephaly that has no brain damage.  woohoo!  but his head is still small so the doc wants to continue monitoring him, and wanted us to go ahead and keep the appt we made with the pediatric geneticists. 

finally the day comes for appt with genetics!  i truly had no idea what to expect, but  i think it went really well.  apparently we saw the expert dr in NF-1, Dr. Rosenbaum at Children's, which was awesome because just from a physical examination he ruled it out completely.  the babys giant birthmark is just a giant birthmark.  so much good news!  we were given an order to get some more blood work done, more specifically an array which i guess is an easier and cheaper way to see if there are any genetic abnormalities.  and also a test to see how his muscles are performing.  im assuming that goes along with his hypotonia issue.  hopefully well be finding out the results from the bloodwork any day now... 

so currently its just a waiting game.  i promise to update as soon as anything new comes up!