This is our story....The story of our journey as a family of four

Sunday, May 23, 2010

Well, I was hopeful for a post last week, but last week came and went so fast that I didn't even have time to think of a title let alone write about it!  Let's start with mama's day....I hope you all had a great mother's day :)  I woke up with a bed full of babies (oh please, like I don't every other morning) but on mama's day it is that much sweeter.  The kids have no idea yet what it's all about, but someday they will realize that they are the little miracles that have made me able to celebrate that day, and they will realize what that means to me.  Being a mom is what I have always wanted, and I feel so blessed to be one. 

Nae and dadio came up with 3 little boxes, one from each of them....they each got me charms for my pandora was pretty sweet to say the least.  We enjoyed our snuggles for a while and then From that moment on it was time to get busy.....we had a mess of house and family coming over in no time at all.  We celebrated...we celebrated Easton's home coming, Caidence's birthday, and of course Mother's was a busy day, but it was a good day.  And after everyone left, the four of us just hung out. We watched a couple movies and just enjoyed the lounge time together, it was great to be able to just hang with my kiddos, and Cody and not feel like I had to do anything else other than just be.  And I will say the kitchen stayed a mess for 2 days after the party so perhaps I got a little caught up in the "just be" moment. 

Back to the week after mama's day was a busy one.  On Monday the 10th, we went up to Buffalo for Lung Center, the NP was ready to yank the plug on E's monitor, but Cody and I had to pull back the reigns a little on that one.  So, I am happy to say that Easton only uses his monitor when I can't keep an eye on him.... so basically just when we all are sleeping.  It feels so good to just carry my baby, and not some monitor along with him...He's cordless, quite the modern feature LOL!  The oxygen was removed from the house on Thursday....wooo  hooo!  And he is doing beautifully, hasn't had a spell in quite a while.  lil turkey. 

We were back up to the B-lo on the 13th, and Easton saw one of  his favorite ladies in Buffalo....Sarah....Dr. Li's NP.  She is so wonderful, I can not even tell you.  She took out his stitches, and bumped up the pressure on Easton's shunt.  He went from a 12 to a 14, and this was due to the fact that his ventricles were a touch on the small side, and we know how Easton's have a tendacy to collapse, so they want his ventricles to plump up just a smidge.  I will say so far so good.  It's amazing what a difference the correct shunt's all about trial and error, and Easton proves to be a tricky one, but I feel like we have finally gotten it.  Phew.

Oh that sweet Easton.....I find it so hard to believe that he is 3 months....that's 1/4 of a year....already.  I don't know how I feel about that to be honest.  Part of me is happy, but part of me is sad that we are already at 3 months with our little peach.   PT is going great still, we've learned some great moves, and I think I'm finally sort of getting the hang of them,maybe.... just in time to learn new ones on Monday.  Miss Anna starts on Thursday, so we will learn some new OT moves to help E along his way.....  He is really starting to smile, and coo, and it is just the sweetest thing.  You really forget how sweet that is.  Caidence now tries to get him to track her, and she'll say to him, "where's nae nae....there she is, as she pops out from behind the pillow.  Watching her with him is one of my favorite things.  She's a good sissy....

The past few weeks have been so crazy....mostly good crazy...Easton is getting everything that he needs, and Caidence too!  We have had her evaluated for speech, and have not heard the official news that she did not qualify, but both ladies that evaluated her said that she wouldn't qualify....sigh.....I just need to remember that these little kiddos do everything on their own time.  She is starting to open up and chat a lot more around us....not so much around other people because she is so shy, but I know that it's only going to be a matter of time before we can't keep that pretty lil mouth of hers quiet :)  I remember when Cody and I sat there in April and said, oh May won't be so busy, and we've had stuff for the pee wees every day but Friday for all of May, and the last 2 weeks we've had at least 1 trip to Buffalo....but seriously now, things should be calming down a bit next month.  I kind of hope. I would just like to get into somewhat of a stuff everyday is fine, but it would surely help if we can get on track where it would be the same time every week, and I know with PT and OT we are there :).

I'd be lying if I didn't say that some days I feel like my knuckles are dragging behind me....but we've all been there.  You just have to keep on keeping on....(what the heck is that from?).  Seriously though, all day I just think to myself..just keep swimming, just keep swimming, swimming, swimming, just keep swimming... whatever gets me through the day somedays. lol...Ya just have to take it day by day.   By the way all of those flowers we were planting in the last post...well, they are all nearly dead...whooopsie... or OOPSH as Caidence says.  E for effort, E for effort....if nothing else, she had fun doing it.

Well, that's it for now.... I will upload some pics of the last 2 weeks later tonight! (ps- E got his pics taken today by my friend Kim, and from what I've seen they look amazing, so as soon as I get some, I will post them!)

love from the rapps <3

Friday, May 7, 2010

Oh for goodness sakes, I am so bad at this!  Maybe instead of every week, I should shoot for every two weeks...that way when I actually post weekly, I will feel like I am ahead of the game...that would be a bizarre feeling.  I feel like I just keep drifting further and further behind, and I'm not going to lie this week I was a loaf in our downtime....I'm hoping for a much more productive week next week!

So, we've been home for nearly a month now, and I'm sure that most of  you already know, but 2 weeks ago we were back up at Children's for yet another shunt revision.  This trip made it surgery #6 and shunt #4...wish us luck that this is least for a while.  It was an all too familiar situation, he was really sleepy all day long, barely nursed...his head was full but soft, but it wasn't until about 10pm that his fontanel was we packed it on up.  It was our first trip to the ER with E, but we went in like seasoned veterans.  Then the resident came in to tap his shunt and at this point Easton's head was softer than it was before...but he tapped it, and it was exactly like times before.  Oh fart I thought....but at the same time, relief....get that thing outta there if it's not working!  So we spent the next few hours in the ER snuggled up with our boy, and then we were off to the OR in the morning.  It was time to try something new and that is exactly what Dr. Li did, since he had tried the other two valve pressures, he felt that the programmable shunt would be the way to go.  And I have to say...Knock On Wood....that so far so good. It's like he's a whole new babe...he rarely bradys when nursing now :) Is this because of the new shunt, or did he just so happen to outgrow the bradys...ahhh we will never know!

Easton has also started PT...we've had 3 sessions now, and we are feeling very optimistic.  E's PT is great, she seems very proactive, very eager to do whatever it is she can for our babes.  He just had his core eval done this week, and after his IFSP, he will start OT also...with Anna! Feeling very blessed about the people caring for our little guy.  Anna and her boss Pat did the core, and they were both wonderful.....I was saying how we weren't sure what our expectations should be, and he looked at us and said "progress" that is what you should expect.  Hmmm..Very well put Pat Green.  He said progress for Easton could mean clearing his head a little more to the left during tummy time. It could be as little as that, but none the less that is progress my friend.   To start E will have OT and PT just one time a week until he gets a little bit older, then we will pick up PT to 2 times a week, and possibly even co-treat a session.  What a lucky little boy Easton is to have such wonderful people on his team...and how lucky are we to have Anna to fill us in on stuff that really we would have no clue about.  

Today Nae got the first big cheese grin from Easton...we were doing our usual snuggle time in the morning,watching a little Handy Manny and wham soon as he saw her came the cutest smile I think I may have ever seen.  So stinkin'cute, and she of course gave one back....and even covered him up with her blankie, which is just unheard of.  She was a good helper today with Deas... She would go over to him and help him with his binkie and I would hear "Dinkie Deas? ".  She also found a few rocks that she stashed away a while back, and brought them over to him to show him and give him one.  It's the little things that go on when she thinks no one is looking that really make me melt.  She loves her little brother, and I am certain the feeling is mutual.  What best buds they will be.

I will say that in the past month I have come to learn a few new things about motherhood....having 2 little ones is very busy to say the least, never mind all of the Dr's appt's, it's just busy!  I've learned that fretting over the house all of the time is pointless, we have learned to live in chaos I am laying on the living room floor looking around at the books, little people and play kitchen stuff strewn about the floor, along with various other things.  Not to mention the blanket I am laying on has todays lunch spilled on it....ahhh, such is life.  Caidence always has been the master of disaster, and has had no problem creating the mother of all messes :).  She's a sweet lil turkey though, so she makes up for it in the cuteness department. 

I've learned that, although gross, not getting to brush your teeth until after lunch is not the end of the world.  My hair is back in a messy pony everyday, make up is a distant memory, and even after I shower I am really only going to be clean for about 26 seconds before sticky fingers comes along or E decides that mom doesn't smell like mom anymore and spits up all over me.  My clothes, which consist of tee shirts and yoga pants will always have wet spots, be it juice, spit up or who knows what.... I wish I could say that I was one of those glam moms, who looks gorgeous and is done up everyday, but right now it's just not in the cards for me....maybe someday...but for now, I'll take the sweats and the spit up.

Also, I have learned that planning things is some what silly.  This is something that we actually learned with Nae when she came the night that Cody was painting her nursery, Easton just validated this.  Things will just happen...and they will happen beautifully regardless if they are the picture you had painted in your head.  I've learned that this matter the cards you are dealt..this is  is what you make of it. Simple as that, so make it the most beautiful life you could ever imagine.  Are there going to be days when you want to break down...when you may actually break down...yes, but see the beauty in that. 

I've learned to be gracious (not that I wasn't before, but what you have all been doing for us has been way more than I ever imagined and although it's greatly appreciated, at times I have a hard time with it.  I  just feel like everyone is doing too much....but at the same time, I am counting my blessings a million times over for all of you and what you've done!)  I've said it before and I'll say it again, really just your love and support is all that we's more than enough! It really is amazing what these little ones teach us...what they bring into their parents lives- I thought that we were supposed to be providing them with all of the knowledge and here they are, teaching us all about life, and what its really all about. 

I really don't think that we are that much different than any other family with a toddler and a newborn, other than we feel E's soft spot about 47 times a day and we have a few more appts, but this is what people do, we are certainly not the only ones.  Like Cody says, if it wasn't Dr's appts, it would be after school activities, or really, this is just gearing us up for what's to come...We will be pros in no time. Hopefully, LOL.  I know that this is new, and although at times we may feel like seasoned veterans, we are just beginning this journey...I also know that we have 2 of the most beautiful little kiddos, and I don't think that we could have planned it any better than what we've been blessed with.  We are blessed beyond belief.

That's it for now, lets see if I can do this again next week...or maybe even before! 
Love from the Rapps <3

                                                helping mom mom make a little dinner

                                                                               daddy's  boys...

                                  loving the swing, and mommy is loving having 2 hands for a minute

                                                              let the yard work begin
                                                               such a helper she is

                                                   and yes Easton, you are a helper too!

                                                             and let the crafting begin..... 

         oh the determination...she sticks her tongue out just like her mom mom when she's hard at work 

                                                           where are you at sissy?  

                                                                I'm working on it mom!      

                                                                         so big