because mama knows

we are a little behind the times here at the rapp household.  what can i say- sometimes when it comes to updating the blog....well, i fail.  but here is the latest.  Mr. Rapp, as in lil mr easton kent rapp, was practicing his standing last Monday and instead of doing his usual kerplop onto his lil hiney, he decided to get fancy and twist down.  I was actually kind of excited to see him do this, until I saw his little leg still in the same position that it was in when standing, and the rest of his body on the floor.  My heart sank, and he smiled...... my heart sank even more.  I knew that something wasn't right so immediately I go into complete panic and spaz mode screaming for Cody because I, of course, went off the deep end thinking his hip was out. 

I put a call into his pt to ask for advice on what to do, where to take him etc, and we both agreed that since we had an apt already with his ped to follow up with him the next day since #1 it wasn't his hip #2 she had me do things that assured us that it wasn't his knee, and there no swelling, and he clearly was not in pain (more on that later)  So Tuesday rolls around and he's not crawling normal, but he's still all over the place so we go to the peds and at first he says lets watch it, but then I pressed it just a little more and he was quick to write a script for some xrays.  (he's good like that, I think he knows that mama knows best.... most of the time) So off we went.  As Tuesday night went on I knew even more that something wasn't right, and it started to swell so by Wednesday morning I was kind of a lunatic waiting for the Dr's to call.... mean while, I kind of just said screw it and called Shriner's to see if they could take a peek at the xrays since they follow E's ortho care.  Sure enough just as I'm about to leave for Shriner's, the peds office calls and says that the xrays came back normal.  'well, good news' I thought for a hot second, then I was like who am I kidding, they must've missed something....... sure enough.

And I got the headnod.  But I was ready for it.  I knew.  I knew that he broke his leg. And then the tears started to fall, and everyone there was so sweet- but it wasn't enough.  It wasn't so much that he broke his leg- that happens, especially to rough and tumble boys (or so I'm told) but the fact that he looked at me as though nothing was wrong after it happened is what killed me.  it broke my heart.  We always had a feeling that he had very little feeling in his legs, if any at all.  I mean we beg for a heel poke when he needs a cbc, but a broken leg.  I guess that I had hoped that maybe when he was older, he would say "yea mama, I felt those shots, but I am so amazingly tough that they didn't bug me one bit".  And then came another knife in the side..... they wanted bloodwork to check his vitamin D levels...... "well, he has many strikes against him- he's not really weight bearing yet, he's breastfed, and no one metabolizes enough vitD, we live in what feels to be the arctic, so no vitD from sunshine, preterm babies are usually deficient..." and in my head I'm panicking..... no vitamin D from BM...... you see I pulled the plug on his multi vitamin because we were having a hard time with some other issues that at the time I felt were more important because they could have impacted his shunt.  I thought- I'm breast feeding, I'm taking my natals- he's getting everything he needs. 

I'm trying so hard not to beat myself up about it because I know that even if he had been on his vitamins all along, it still wouldn't have been enough for him, but I can't help it.  It sucks.  You think you have all of your bases covered and then something slips passed you.  I never even thought about Vitamin D- never, not once..... but all day, every day I think about things that could mess with his shunt, tethered cord, chiari...... I literally think of all of these things at least once a day- how could I not think of Vitamin D?

Needless to say after going to 2 labs to get his blood drawn because the first couldn't find a vein I was whooped...... Spina Bifida had whooped my ass for what felt like the first time.  Not gonna lie- I cried on the way home like I havn't cried in a long time- I was ready to give SB the one finger salute, and I know you know what I mean.  But then I looked back at this sweet little boy, who had just had as long of a day as I had ..... Who had this weird splint on his leg, had been poked and prodded and man handled and he just smiled.  And that's when I knew that SB hadn't kicked my ass.... it may have kicked me- but in the shin or something.

I know that it would be easy to say- he doesn't know any different, and that may be true- but he still doesn't have to like it.  It doesn't matter if he thinks this is the norm or not- he could still be miserable at all of his Dr's apts, he could still scream when strangers are man handling his leg.... he doesn't have to be the way that he is..... he doesn't have to know that this is not what all little boys do and still be such an amazing little person, he just doesn't.  he could be a grump just to be a grump- but he's anything but that, and this is why SB will never kick his ass.

mama knows what mama knows.... and this mama knows that nothing will stop this little boy.

one year.one week.four days

Baby boy is one.  ONE year old.  Even though he is a year, a week and some change I still find my self saying to him.... you are one?!  I can't believe it's been 12 months with this lil bubber already.  There are days when we feel like this past year has taken it's sweet time, but then moments where it seems like it has gone so darn quick that I find myself grasping for every memory so I don't forget anything.  It's funny as I sit here and write this, because to be honest- I started this post on his actual birth day....February 17th.... and here we are on the 28th, but yet- I think there was a reason that I held off- and that reason being that he wanted to give me one more reason to look at him and be in absolute awe at just how strong he is (even for a one year old).  Because he did...... but more on that in the next post.  This post is dedicated strictly to the celebrating the last 365 days and all that they have brought us.  They have been beautiful.  That is all that I can say about the past year is that it has been wonderful to have this little man be in our world.

To be frank- this little man named Easton is my hero.  He has been called an old soul many times, and people have said that he looks like a little man, and I feel it in me- that at the ripe old age of one this little boy knows more about the world than I do at 28.  He amazes me, and I love every single thing about him.  I love the way that when he meets someone new- he looks deep in their eyes and studies them before he cracks a smile (he's a little easier on the ladies, well, because he's a ladies man) - I love his sweet little personality, and his new found fiestiness.  I love the fact that when Code and I are talking about his future, we know he'll be just fine.  I love how he can make us feel that way.   He is already reassuring us of his endless possibilities and he can not even speak..... but we can feel it.  I loooooovee the way he loves music, and leans his little forehead in to my cheek when I sing.  I love the pointing, I love the picture perfect temper tantrums that usually end with him peaking up to make sure I'm looking with a smirk.....well, I may not love them at the moment- but a few minutes later, I am sure to smile.  What can I say, this little boy has got me- and I am so glad.

On his actual birth day I think my favorite thing he did was he stayed up super late for some reason....... He was so tired but would not give in and it was a little after 9 and all of a sudden he got so silly- snuggling, giggling and rubbing my face- I mean he was being ridiculously cute and sweet- and although he didn't make it until the minute he was born- he came so close- and it was the sweetest count down to his to-the-minute-birthday I could have ever asked for.  So there we were rocking in the playroom when he was born a year ago- and all I could remember was that sweet little puppy like squeak he let out when they lifted him out.  That sweet boy.

cheeser

first taste of cupcake on the 17th

kiss this face? absolutely.

miss caidence helping miss nora

nizz's creation

our creations

Happy 1st Birthday Easton

Sissy and Thurman waiting for the kiddos to arrive

there's a whole lotta pregnant mamas in this picture- yay for more babies!

e's boys

because he's cute- "Happy Birthday take 2"

with no afo's..... not really sure if it's legal, but he was doing it!

gigi and nae

 nora with her lil squeeze

and i mean really- how cute is this?

rosalie :)

craftastic

a lil daddy love

and sweet Avery

the cuz's

whooped, but loving life

kiss this face?..... maybe not.  This right here is caidence's creation- not really my vision, but I let her do her

 thing.... sometimes it's better to just let them take over :)

 presents with the family <3

 peek a boo with the fam

and finally "Happy Birthday" take 3 with the family

and that right there was our 4 day Birthday extravaganza..... it was so nice to see everyone, and be with everyone on our sweet baby's first birthday.  Thank you all so much for celebrating with us- it means so much to us, we are so blessed and we love you all :)

to stand.....

we've had the stander for less than a week, and needless to say he loves it.  He loves to be at eye level with his sissy.  He thinks he is a big shot, because well, he is a big shot.  Right now he can stand comfortably for about 30 minutes at a time in there with no complaints at all.... and thanks to a very handy daddy, he has a custom table that he will be able to wheel right up to and play with all of his favorites!  Now mama just has to paint it fun and crazy to match the slimer green stander!  Thank you so much for all of your hard work Dana!  Now it's time to hit the mall with all the mall walkers and get him to propel it on his own so we can get this baby approved! yay for small victories!

back to party planning!  I have so many cute pictures to post :) happy day to you all

One day....

This right here will forever be my February song. Meant to be uploaded to the blog on the 1st, yet here we are on the 10th..... details, details. This was a huge part of the Olympics last winter so it was always on the radio- it was always the song that I hoped for on the short car ride from the RMH to Childrens and I must admit that E and I jam out to it at least once a day. And everyday I cry with a smile on my face because, well it's that kind of song to me. Clearly, I'm letting you all in on the small little fact that I am a HUGE cry baby. What can I say- it's what I do.... not because I'm sad, but it's like laughing.... I do it once a day.

The passed weekend was grand- we went to the snowflake festival with some of our favorite people...some feel good people, and although it was maybe a bit busy, I think the kiddos had a great time building their bird houses (or in Caidence's case a dino house).   Thanks for hanging with us Haglund family :)

By the end of it, Easton could barely keep those little peepers open, but man these pics are stinking adorable!

ahh February.....

This is it...this is the month, just one year ago, that our very own little rockstar entered our world.  I have been on an emotional roller coaster for the passed few weeks, thinking.... thinking of all of the wonderfulness that this passed year has blessed us with.  I'm not going to lie that I have also been haunted by what he has been through.  Now this post is not a "poor him" post, it's not a "poor us" post, because if you know anything about me at all, it is that nothing. NOTHING. in our lives is worthy of a "poor anybody".  We have it good.  But I think everything that has gone on in the last 12 months is all of a sudden rushing in to the fore front of my mind, and it's all a bit overwhelming.  Good and bad..... I can't even say bad, trying is maybe the better word for it- because we have had trying times.  Trying times that it would be so easy to slip into all of the negativity, all of his hardships- and just let that overtake every ounce of our being- but here at the Rapp household- that's just not how we roll. 

It started a few weeks back when I was emailing another mama, who has been with her sweet little one in the NICU since August.  That's right. August of 2010.  I was trying so desperately to explain how different life was once you were out of that place.... and in your own home, with your baby.  With no rounds... no Dr's referring to your baby as "baby Rapp", no tubes, no beeping monitors, no other babies that even though you don't really know their story, they are in the same room as your baby, and a part of your heart is at their bedside as well as your own kiddo's.  No nurses poking and prodding your baby for a vein that just has nothing left to give.  There is no tape covering your sweets face, no head wraps, no IV boards taking up every little inch of their arms or little feet.  None of that is at home.  It is you and your baby... your rocking chair, your walls surrounding you, your comfort, your safe haven.  Your baby is home.  As I was  typing this email the tears started to fall.  Tears that I guess I didn't know I had in there to fall.  I hadn't thought about the nicu in what seems to be ages..... not like that.

Now I don't want to paint it this dim shade of gray on his nicu stay, because we had many, many bright spots.  We had amazing nurses, and Dr's surrounding us.  Amazing family and friends at home supporting us in every way imaginable...... but just looking back at just Easton, just picturing Easton Kent in his bed- it gets a little overwhelming.  But then I think.... He is a warrior.  That little boy, our little boy is extraordinary.  and boy oh boy let me tell you how good it feels to be home.  I know that we have been home for months now, but looking back makes these walls surrounding us seem that much sweeter- because after all it's not so much what the walls look like, it's the feeling that you feel when they are surrounding you.  I will be first to admit that I sometimes lose sight of this..... but really what else could matter- our kiddos are home, they are happy, they are loved, they are healthy, and everyday they do something that makes my heart skip a beat because it was that amazing.  every single day this happens to me.  So no matter how "haunting" (and I say this loosely) those days may have been, they are gone, but we are here now and that is all that matters.  This is all that matters.  Our little boy is about to be one. And he is crawling. 4 point crawling. And trying to pull up. And working on standing.  And doing things that babies do.  And has the biggest brown googly eyes for his mama..... What else could matter? nothing.  Happy Birthday month my love.

Many more posts to follow- we have many, many great days ahead of us in the next few weeks- and this mama has many, many crazy mama emotions a-flowing right now. 

because we could all use a little.....

.sunshine.

and Caidence supplied it for us.... in our laundry room on our chalkboard painted door.  it has been a long, cold, don't want to leave my house kind of month...heck winter!  I'm not one who typically complains about the weather because well, it is what it is, but I am ready to get the kiddos out there in the snow to play, and it's just been too cold!  .....enough about the weather for goodness sakes.

This week, it would appear as though things are on the up and up around here.  Maybe it's my eternal optimism, or maybe it's the fact that it's only Monday- but things are looking and feeling good again :)  Last week we got "the letter" denying E his stander so I was pretty much a hot mess for Thursday and Friday, and I feel bad because I blasted E's OT with a bunch of nastiness first thing Friday morning.  *Please note I was not yelling at her, she is one of my best friends from when we were little, and by little I mean we were in diapers little* but I spent much of his session mouthing cuss words about the system and how the whole thing is, ahem excuse me, but ef'd up, and how this little boy, our little boy, who is ready to stand has to wait for paperwork.  I do just need to quote one line from our letter.... just because I guess I am still feeling a little hot under the collar about it.  Out of the eight reasons why this one really made me scream the most:

6. Most children Easton's age require close supervision and intermittent physical assistance for various activities.  Why does he need to be able to "stand, play and move about his environment independently without another person's assistance"?

um....seriously.  Easton will be one....1...12 months old in just 30 days.  Now I am well aware that not all kids are walking at this point, but what I am aware of is that my son is trying his hardest to pull up on things to stand, but his little knees and ankles are not yet strong enough.  He wants to do it, he is ready to do it, he just needs that little extra help, the help that a stander would give him.  Don't get me wrong, I sit there and help him until my arms feel like they may fall off, that is how much he loves it.  But so we sit and wait for the paperwork... for his PT to write another letter answering ridiculous questions like #6 listed on our denial...and by we sit, I mean he sits and waits, literally.

mmkay well on that note, I'm done with that topic because clearly I'm still very pissed off about it.  Yes, pissed.  And when I said I mouthed the cuss words that may not have been all that accurate either, I am giving myself way too much credit because I'm pretty sure some were out loud.  my apologies, this isn't really how I roll, however I feel like I am failing our son, and well that will make a mama lose her cool.

Anyways onto our last couple of days:

 

Easton has been going bananas for big people food, so we tried our hand at some noodles mixed with some yummy baby food, and well he thought it was pretty neat-o, with a side of peek a boo.  I just keep thinking if only those noodles on his chin spelled something!

Fancy pants aka punky brewster has entered a world all her own..... with pipe cleaner crowns that daddy made her, and rollerblades that are much too big for her but she works them out.  She looks a little like a mess, but if you'd ask her she was being Olivia, the Ice princess, because that is what she is in a trance watching on the tube. 

and we ended  our Monday with a delicious session of  cupcake baking and this is what we came up with:

and because each sprinkle was hand selected made these cupcakes that much sweeter.