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 it...at 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 firm...so 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 bam....as 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 ....as 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 life...no matter the cards you are dealt..this is life....it 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 need...it'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 sports...so 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
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!