{save a baby isaac: donate your cord blood}

calling all: pregnant mommies, future mommies, friends of mommies & daddies: this is something AMAZING you can do to save a life. it is super simple. it requires little time, no extra doctor visits, procedures - nothing.

i'm talking about CORD BLOOD. 

did you know you could donate it? because i didn't, & i wish i had.
i have talked about becoming a bone marrow donor before, but cord blood is an alternative to bone marrow depending on the patient. its an either/or. so it is JUST as important.

even if this post doesn't apply to you particularly, please please SHARE IT! post it. pin it {thats why i have all the type across my photo today}. tweet it. the more i talk with people the more i realize that this isn't a widely known option. cord blood banking is becoming more talked about, but to know that if you don't choose to save your cord blood there is an incredible, life saving alternative to throwing it away!

i am going to walk you thru all of the steps to getting you informed as best as i can. you ready?

step one:

you can start first by watching this two minute video from Be The Match.

<iframe width="640" height="360" src="http://www.youtube.com/embed/bh_xoXf16AE?rel=0" frameborder="0" allowfullscreen></iframe>

step two:

know what options you have with your cord blood. i will say, briefly: you can donate it, save in a private bank, save for a sibling with medical needs or do nothing.

more info on those HERE.

step four:

if you decide you would like to donate {horray horray! you rockstar you}, the steps to follow are all listed out pretty clearly HERE.

i will lay them out for you on here, too, if you aren't a clicker.

1. talk to your doctor. as soon as possible is great. the window you want to hit for setting it up with the cord bank is between 28-34 weeks, so you have 7 weeks to get this done. i would still tell your doctor if you are considering it even if it is earlier though. & mark it on your calendar, so you don't forget. remember that pregnancy brain people told you about? its not a lie. you will thank me.

2. once you have reached your 28 week mark, go to Be The Match & fill out a 12 question survey to learn if you are eligible to be a cord blood donor.

3. if you are eligible, the survey will take you to a page where you select your state. from there, a list of the hospitals in your state that currently collects cord blood for public banks will appear. if your hospital IS listed, you will need to make a quick phone call to contact the cord blood bank. it is listed right next to the hosptials name. they will give you any further instructions & information.

4. if your hospital is NOT listed, select the 'not listed' button. from there you can fill out a referral form online. this will give a cord blood bank in your area your info so they can possibly send you a collection kit. there isn't a guarantee that you will be able to donate, but it is DEFINITELY worth pursuing! at that point you wait.

That is IT! Really not complicated. a few clicks. a phone call. a few minutes talking with your doctor & look what you just did?

you saved a baby isaac just like that!

the website, i really think is quite clear, but if you have any further questions dont give up! email someone at Be The Match. I have talked with many of them & they are there to help you out! you can feel free to contact me as well. i won't be able to answer questions quite so well, but i will do my darndest.



{p.s. FA Fundraiser coming in the next week so keep checking back! we have some pretty great things to give away for you guys!}

{isaacs new groove}

isaacs cast came off a week ago tuesday! i've been bad at keeping people updated. we've had some friends that have been surprised to see it off because i just haven't really let anyone know!
i 'deleted' my facebook...two weeks ago now? thats probably for another post. daniel did too. we both feel like our minds are so much quieter, but that was also another way of keeping people updated & that is gone now, so i will definitely need to start blogging a bit more so people can know whats going on.

so the CAST! the whole process of getting it off, once again, wasn't fun. daniel came for moral support. isaac screamed like crazy the whole time, which is a shame because the man that takes the casts off in their office is so kind & that is the only time isaac sees him. not to mention the fact that we just hate to see him crying like that. he has just become really sensitive to anyone other than family touching him. i can't say i blame him.

it has been a week and a half now. he has no restrictions with his arm at all - his dr said he could start crawling (ha) if he wanted to, but he is still really sensitive to any kind of touch on it. i've been trying to rub it really gently with coconut oil a little every day on the scars to kind of counter-act some of the touchiness. we're making very slow progress. he still cries most every time it is touched, but he is starting to move it again on its own & bend it at the elbow again. he's not moving his fingers much, but we're getting there.

ONE LAST THING:
may is FA awareness month & we are doing another blog party a lot like last year, only this year we are  working on a pretty kickin fundraiser that we are saving for the end of the month. you guys...its going to be aweeeeesome! so be looking out for quite a few more posts from me this month!

{baby botanist & i say thank you}

so, if i am being honest, i couldn't look at any of your kind, encouraging comments for several days after my last post. i just needed some time to process what i finally wrote down. & plus i was nervous about sharing all of that!!!! once i finally DID start reading all of them though...i don't think i've taken quite so long to read thru each one ever before. everyone has their own battles, don't they? & i could feel that in so many of your comments. the rest of this week was still not, as events go, a wonderful week, but my spirit was still lifted & more encouraged. thank you! i responded to quite a few of your comments - i could have to each of them. i wish i could just sit & have coffee with each of you :)

well remember how i said in the midst of everything else in that last post that isaac loves plants? well i wasn't kidding. he helped me pick out a few for our herb garden a couple weekends back & we planted them all. some classics, & a few oddballs, just for fun: rosemary, mint, basil, stevia, chamomile - & strawberries made their way into the extra space, too. 

our indoors are finally at a stopping point, so we will hopefully be spending a lot more time on the outside, now. i think isaac will be okay with that...

{there are good days & there are bad days}

ready for a crazy, rant-like look inside my head? we're talking an all over the place, how-did-her-train-of-thought-totally-jump-there-i-am-not-following-at-all kind of look into what i've been thinking lately? & by lately, i mean on & off for the past two years...

in all the time i have been posting about isaac, i feel like we have been pretty...optimistic. i suppose you could say that. he has been our greatest surprise. he fills our live with smiles & laughter & fullness. he makes life seem precious. we have been able to live out the last few years as well as we have because we love him & we believe isaac is god's special gift to us -  to make daniel & i better people by teaching us love other people more, to share our story & to give isaac a family that will love & take care of him. that is just some of the good.

at times though, i feel some of the more negative things.
i wish i could just brush it all aside. that i was stronger. that my skin was thicker. but its not.

i don't handle all of the craziness well sometimes. okay. a lot of the time. i can get majorly stressed over treatments, diagnosis, xrays, surgeries, doctors not understanding isaac, reworking old treatment plans, isaac not eating, not growing, battling insurance companies...its the kind of stress that literally feels like you can't breath normally - that makes your brain feel fuzzy & lightheaded. the kind that you need a brown paper bag for. you know what i'm talking about? i know that is something i need to get under control. i pray so often for god to take away my anxieties, but they are quick to creep back in...worrying is something i've always struggled with. something i'm working on.

i go thru periods of big time exhaustion - having an 18 month old that still acts, in a lot of ways, like a newborn & wakes up in the middle of the night, every night, takes a toll. we adapt in a lot of ways. i joke about being used to sleeping 3 hours at a time - but really, a year & a half of the stuff is enough to make a lady a little crazy. & i have become a little of a crazy lady.

i cant cry anymore. daniel & i have talked about this a lot, but something happened in these past few years: my eyes just...dried up. most of the time i cant cry even if i want to. it probably sounds like im making this up, its such an odd thing to say. every so often, something will catch off guard & makes me tear up - & usually its something really small & silly, but on the whole, i have become a master at shoving all emotion somewhere out of thought - except for the stress. funny, isn't it?

it seemed like a necessity early on. i am absolutely incapable of thinking & communicating when i cry, & we had so many doctors to deal with, i just made myself stop & haven't really been able to since. it probably makes me come across as indifferent a lot of the time, or not fully understanding the weight of the things i am talking about with people. but i really don't even know how to change it right now, either...

we have had ups & downs all along, but right now seems to be one of the longer seasons i've been feeling more discouraged. its often just day to day, but the past few weeks - or month, have been especially trying for multiple reasons: extra feeding stresses, possible g tubes, shunt studies & overall added fussiness to name a few.

since isaac has been born, we have really tried to live our lives as much as possible like we did before we had a baby. we include isaac into a lot of the things we have always done. i feel like that is healthy in a lot of ways. i want him to grow up feeling like a normal kid. but the older isaac gets, i realize that he is different - wonderfully made, but different. our lives are just going to look a little different. we have tried - maybe too much to keep things the way they were - to strive for what we think normal should be, but i need to realize all over again that for us, its okay, & that some things we just need to do for our family may be...different {as i say different btw, i am totally thinking of the fantastic mr. fox wiggly hands kind of different each time}

we have started to fall into this pattern of wanting more: striving & grasping for things that maybe will never be. isaac has done so well. he is our miracle baby. when i was pregnant & we still didn't know what he had, we told each other that if he only was ever able to know that we loved him, we would be happy. we meant it when we said it, but as he has grown & progressed & also watching other babies grow, we have become dissatisfied with just that. as soon as isaac hits any kind of milestone - which is a BIG deal, we immediately want to push for the next thing. for more. more is good, but an attitude of 'more' that says 'we need to try to keep up! is that too much to ask, because i don't want to feel like a failure of a mom...' - that isn't the kind of 'more' i want to be apart of me.

when did i let the evil seed of comparison rob me of the joy of just enjoying isaac for where & who he is? why do i let comments on my parenting or looks we get at the park have such an effect on how i think?

here are the facts: isaac is almost 19 months & he is 12 pounds. not because we don't feed him. because FA kids are small & have poor appetites. & of them, isaac is still one of the smallest.

isaac doesn't eat food. no really, he hardly eats. he is a milk only kind of a guy. its not because i haven't tried countless times to let him suck on melt-in-your-mouth baby puffs. its not because i am trying to be too healthy with him & only feed him pureed veggies that i steamed myself {although i have definitely tried that}. i have tried every kind of puree. every mashed food. every juice. i have stuck trays of food in front of him & tried to get him to just PLAY with his food. i have tried getting him to just look at a spoon without crying. he has gotten progressively worse with his past few surgeries. i am in full gear every day stuffing his bottle with extra calories, because we ARE grateful he {most of the time} takes his bottle well. we see speech therapists & nutritionists all resulting in little or no progress. isaac doesn't crawl. he can't sit up on his own. he can't feed himself. he doesn't like his highchair - actually, he screams when he sees his highchair. other kids like THEIR highchairs? why...cant...i...just...FIX...THIS?!

i think like that more than i would like to admit. but sometimes, more & more, i try to catch myself & think of this: isaac is our precious miracle. isaac knows he is loved - isn't that all we ever wanted? isaac has a heart of gold. he is HAPPY. mostly. isaac is a survivor. isaac is the bravest boy i know. he recovers from huge surgeries in a matter of days. isaac can turn the page in his books. isaac LOVES plants. he loves them. isaac is an ever-baby & it means i have more years to snuggle him close to me when other babies just want to crawl away. isaac loves being outside. he loves birds & airplanes. he loves the blue swing in our backyard. isaac makes people happy. i don't understand it, but an isaac smile can make someones day brighter. isaac loves yo gabba gabba. he loves dance music. he can scoot across the room on his head to make up for his unwillingness/inability to crawl. isaac is alive. there are so many things that are right about isaac. he has such a personality already, so why do i let my heart become discouraged? it happens when i start to try to fix things on my own or wish for something that isn't where we are.

i haven't written anything like this in awhile. im hesitant to post it because i'm not looking to be really negative, or to be pitied or get on my soapbox & vent on a bad day to let you know that things can feel pretty cruddy around here sometimes...

all of this is to say that some days i feel none of the negative things, but other days.....
some days are really hard, too. & i don't say that a lot. maybe even knowing that will be encouraging to someone that feels like their days are long & stressful & crazy whether you have special babies or not. i mostly post just the good things. the smiling faces. my living room after it has been cleaned & scrubbed. i want this blog to be full of hope in the midst of our crazy, not-planned-for lives, but we are real people, too. & i want people to know that anything good they see in me is jesus in me - because the 'just mindy' part isn't so pretty a lot of the time.

i don't know how to end a post like this, i don't have a nice tidy way of wrapping up my thoughts, this is just...it. the good, the bad & in between.

{a peek at isaacs new hand}

 

just a quick update: we got a little sneak peek at isaacs arm yesterday before they put a new cast back on. this time i requested a camo print to wrap him up in :)

isaac was absolutely horrified of the machine that saws off the casts. & of mr. mack. it was the saddest thing. BUT LOOK AT HIS HAND!!!! its so long! & STRAIGHT!!! we couldn't get over it. it was so strange, seeing it...it's still pretty black & blue around where the stitches were, but its healing up really well. 

three more weeks of the cast & we're done!

{happy 18 months! we celebrate with arcade games & cardboard pizza!}

isaac turned 18 months old this wednesday. i meant to post then, but between all of the photos uploading i forgot to actually press the 'publish' button.
that seems to be happening a lot, lately.

this month i am really truly going to post more. i am. & i have a slightly tweaked blog to hopefully get me motivated. something simple & clean looking. it kind of reflects a bit of the spring purging we have been doing around our home here, too.

but back to isaacs birthday! we took him to the best of the best places - chuck e cheese!
he LOVED it. it isn't like i remembered from when i was little. not quite so glorious & also a lot brighter? i remember it being almost pitch black in there. maybe we just hit it at a funny time? but he adored everything about it, & we actually had a lot of fun, too. he also had his first taste of processed & not even that tasty pizza & he actually ate little itsy bitsy bites of it! what the heck!?! i have been trying to get this boy to eat ANYTHING for the past year & this is what it is going to take, i guess...

so after all of the festivities & games we went back home & opened a few little gifts & tried to give him a taste of birthday cake. nope. not interested, as you can tell. we try...

i made this yummy cake. the icing was divine. i'm not sure what everyone thought of the cake. i actually followed the recipe & it called for white whole wheat. it did taste a tiny bit...wheaty. but still good. next time i will try a gf all purpose & see how it turns out, i think...

{surgeries 7 & 8}

 

well, the end of some of these surgeries is finally in sight, now.
isaac was a champ, as always. he was obviously really achy & sleepy friday thru sunday, but then something happened yesterday - i think he decided he needed to make up for all of the missed play time. i couldn't get the boy to sleep almost all day. i was exhausted by the end of it, & he was still going strong, somehow...

the cast actually doesn't seem to bother him like i thought, so far, & actually, it helps prop him up quite a bit better when he's sitting, so theres a plus. its also making him use his right arm more in the next few weeks, which he's never really done unless his left needed a little extra grabbing support, so both of those things are actually really good. the cast will be on for 3 or so weeks. im excited to see what that little arm is actually going to look like. AND to be able to change his shirts again. i think i'm going to have to take scissors to a few of them. this one is really the only one he has that i can weasel his cast through.

we were only at the hospital for 36 hours this time around. our shortest visit yet.

both surgeries went REALLY well. without a hitch. something we don't take for granted.
he was in the operating room for just over 5 hours & had three surgeons working on him. one for urology things & two working together on his hand. we loved these surgeons before, but after having encountered them outside of their offices & at the hospital we like them so much more, even. they were all very thorough & kind. we felt like isaac was in the best of hands.

the rest of this week for us will just be laying low at home. a few therapies are already starting back up today & tomorrow for isaac {speech. nothing crazy}. & we will try to stay well for the rest of flu season & keep the little man happy & comfy before we venture out to too far :)

i will most definitely be ready for spring after this.