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

Thursday, December 30, 2010

Back in the saddle

Oh it's been what seems to be forever, and oh how I've missed this, and as sad as it is.... this is going to be a short post (with many  more to follow). 

To begin with, I hope that everyone had an amazing holiday, filled with magic and happiness!  Ours was pretty wonderful, and beautiful, and crazy and busy and worth every single minute of sleep that we missed out on!  post coming soon!

There are so many wonderful little delights going on in our world right now, that I just had to get on here and share them all with you!  For starters, baby boy is crawling!  It's more of an army crawl right now, but he gets up on all fours and rocks it out like no body's business.  He is really starting to make more passes while up on all fours and it's all starting to come together for scooter.  And while he's up on all fours he gives his sissy this little "you know what" eating grin, and I just think to myself, 'I am not entirely certain we are ready for what he is about to unleash on us'.  But bring it on bub!

In other E news..... we went to Shriners yesterday and had one of the most amazing Dr's apts to date.  I walked out of there with my head held high thinking "hell yea...that was our baby they were just talking about".  Easy E showed off as he always does, and schmoozed like the best of them.... and then he got down and dirty and showed them his new moves.  He was all over the exam table, army crawling, up on all fours, from all fours to sitting, and then Dr. Schrantz started to rough house him a little bit to see what he was really made of, and he sure showed him.  I wish Cody would've been there to see it all.  It was sweet, as Dr. Schrantz gave E a smile. A real, genuine, different kind of smile..... it was more than just a "he's so cute smile"... it was a "good job kid, kind of smile" and I'm not going to lie, it made me feel like the proudest mama in the world.  And then the play time got down to business, and he started talking about our next plan of action and I quote....

"Let's have Janet do an hour session with him in 3 months so we can discuss what bracing he will need for.....(wait for it)...... WALKING.....(did he really just say?! oh focus mary...focus!)  He's a strong little guy, and very bright and it won't be long before he starts to figure this all out"

So in my head I'm freaking...beaming.... ready to bust out in song, and maybe even throw in a few jazz hands.  I was just ready to scream.  I'm doing the math, wait 3 months... he will only be 13.5 months old!?! Really? could walking even be a possibility?   Now I do feel like I have to throw this disclaimer out, even though they are talking about walking, does not mean he will be ready to, but it makes me feel so good that they are getting him ready, and making the preparations for when he is ready so that he won't have to sit and wait for these things to happen.  Phew, I am one proud mama! (and one bummed mama that I have no pictures to document this Dr's apt, because ugh, it was an oh so sweet one) 

And not only is Easton doing big things but Caidence is doing some pretty fancy stuff too!  Today we went to her new school to tour the classroom and meet the director of the program.  Yup, baby girl is going to preschool (um, only one day a week, and I will be in the same building as her the whole steps, baby steps).  I asked her this morning if she wanted to go to her new school, and she was hesitant, but then I just had to throw in the "like Garrett, Nolan, and Kole" and I got the "YEA" that I was looking for.  Then I hear this "Nae Nae ride the bus", I was so bummed to tell her no, and then she asked "the baby bus", again "no, just in mom moms car"  what a bummer.  All this hype about school, and she doesn't even get to ride a bus, but she was excited none the less.  So off we went, and she made herself right at home.  After checking out the two-by-two room, we went into the 3,4,5 room where she walked right over to the aquariums.  Mrs. Byrne let her feed the fish and the frogs, and then she went to to last tank..... and there it was.  Heave.  A tarantula.  I am literally ready to run out of the room screaming, leaving both of my kiddos to fend for themselves against this caged animal, but I played it cool for the sake of the wee ones.  "look Nae, just like Charlotte" and now I am expecting her to grab onto my leg and start freaking her freak, just like I wanted to do hers, but no she gets closer and points and says "Charlotte!!" all happy and so not afraid, as I am left scratching my head because this is the girl that would shrill over daddy long legs and ants.  She used to make Grace pick them off of the slide for her, and she is looking at this HUGE, gross, hairy eight legged thing as if its a bunny rabbit. Heave again.  Needless to say, I am relieved that we won't be in that room until the fall so I can try to pull it together by then. Heave yet again.  But needless to say I have no pics to document this fun event either because, well..... when your flying solo with the kiddos sometimes 2 hands is just not enough.  i will do better. i must do better.)

Well, I guess this post is kinda lengthy after all.  I will spend much of January playing catch up on the last few months because I really dropped the ball on this one, but after the laptop took the big one, there just wasn't much of a chance for blogging....ah well.  But now we are back up and running, and I will go back through old pictures, and my day planner to get you all caught back up and E's firsts (and yes, that is what we have resorted to....Easton's baby book is my planner, so not only will he be able to look back at all of his milestones, but he will also know Dr's apts for everyone in the family, when bills were due, a great Iced Tea recipe and all of the other randomness that was jotted down in 2010.... what every baby book should consist of.  The poor kid!)

Well, I am sure I will not be back on until 2011, so Happy New Year my friends!

Wednesday, July 7, 2010

The latest with Easton.......

My oh My this sweet little boy of ours surely keeps us on our toes....and the doctors here at Childrens...

On the fourth, we were just hanging out and baby E was taking his usual 15 minute cat nap, and when he woke up I found the fluid running along the tract of his shunt tubing.... there was no leakage outside, I just knew that he was swollen along the tubing, so I called the neurosurg resident and he of course said bring him on up....which come on, I was already packing our bags.

So there we were in the ER....and I have to say, although I'm hesitant too - i don't want to jinx our luck, but we have been so lucky when it comes to getting right into the ER, it seems that we just beat the rush everytime..... and now I have no doubt that we will be sitting for hours then next time we come up!  Ah well.  They did the usual catscan, shunt series x-ray and tapped his shunt.... at first glance everything looked good, until the resident took a closer look at the x-ray.  The distal end of Easton's shunt that is normally in the peritoneum had migrated through one of E's hernias.  (yes Easton had bilateral hernias which we were just keeping an eye on, hoping they would heal on their own- his urologists usually holds off on surgery until the kiddos are older)  And so we were admited.....

Welcome to Variety 9!  again.  On Monday we sat around for much of the day just waiting to hear some news.... any news.  Then finally Urology got called in and he was booked for surgery.  Dr Williot said that Dr Li (the neurosurgeon) but an ASAP in the message lol.... and let me tell ya, I couldn't agree more with that ASAP- we have a working shunt here, lets not take any chances! We met Dr. Williot down in the OR maybe a 1/2 hour after he came in to check on Easton, and can I just say that I really do love him.  He has got a fabulous personality, which just makes this whole situation that much easier.  

It was Easton's longest surgery to date, lasting a little over 3 hours as he had to push the catheter back up where it belonged, and then tied off both hernias so that E wouldn't have the opportunity to try this again.... as Dr. Williot said, "he fooled us once, he won't be able to do it again"  As Easton was in surgery Cody and I played a little rummy to pass the time...and he whooped me, but as we were playing, Dr Williot came in and sat down (as we were the only parents in the waiting room due to the fact that it was considered a holiday) and grabbed the cards and did a few card tricks.  All I could think was, well obviously everything went perfect, and then wow, he really is Patch Adams!  And then after wowing us, he told us the the surgery was a success!  Woo Hoo! Thank you Dr. Williot!

We have just been hanging out since because E still has some swelling along his tract, Neuro just basically wanted to keep an eye on him for a couple extra days, just because Easton has somewhat earned that.  Plus they are very good with letting us have the comfort of staying the little bit of extra time, so that we can leave knowing that we won't have to make the 1 1/2 hour drive back up here.  

This makes OR trip #7 for our sweets, and part of me is saying enough is enough- actually all of me is saying that, but there is a part of me that doesn't want to have the throw your arms up in the air, thinking what the eff feeling.  I mean the last 4 days, Easton has been his smiley, flirty, happy self.... he's not throwing his arms up saying what the heck mom.... and yes he is too little to know what he's really going through, but I also know the baby down the hall that has cried his whole stay doesn't understand either.  I just love E's outlook (I say this like I know what he's thinking or something, but I do know that he is the happiest baby on the block, and that's good enough for me!)  So I choose to be like my son, I choose to be happy go lucky- because I have so much to be happy for.  It took me a couple days but I've found the silver lining....we have been stuck in the a/c for the past few days, while its been in the 90's outside....we've been able to have a few dance parties, and have played toys, and he has had the opportunity to win over a few more nurses ;) and drum roll please....we still have a shunt that works (everyone knock on wood)!! I will say that I miss the heck out of Caidence though, and can not wait to see that sweet little girl and snuggle her up!  Hopefully soon!

first snuggles after surgery

whoa mom that a finch?

fun in the sun for the 4th

We, as many Americans this year celebrated the 4th on the 3rd, which I have to admit I was not a huge fan of- fireworks on the 3rd just seemed goofy ....however I am so glad that we did because on the 4th, we were headed up to Buffalo with E, but that's for another post!  We started the day with a short viewing of the Warren parade..... we left half way through it because we were onto phase 2 of our day.  We met the Gilevski's at Midway (or as the coin I made in the arcade says Midwax 2010.....whoopsie lol)  The girls had such a great time.  They were adorable, and I just couldn't get enough, and neither could they!  

They rode the rides and played the games.... they were so cute to watch together.... Caidence could not get enough of the fast rides, she kept trying to get on the Dragon (thank goodness it was broken) That girl is more of a dare devil than I had originally thought!  We spent a couple of hours at Midway, and that was enough for the pip's and off we went to our house for a bbq before the fireworks.  All in all it was a sweet day, and those girls are just about the cutest best friends ever.  Holding hands, and just being them.  I really love them, love their sweet little friendship, and watching it grow.

Lots of pics here! Sorry I had a hard time editing!

fireworks were great, and the whole time Caidence shouted out her colors...and I have to admit I loved the purple ones just because I got to hear her say "puhpal" in that oh so sweet voice of hers.

It was such a great day...great times with great people! Thanks for spending the day with us gilevski fam!

And just wanted to say Congratulations to the Lampo family on their sweet new addition Madden James...enjoy every single sweet little moment! <3

Toy Story 3 -6/24/10

We took the kiddos to the drive in....this was actually Caidence's third movie at the drive in, but the first she may remember, and I'm sure actually enjoyed.  We went to Ashville General for some of those oh so yummy subs, for dinner, then we were well on our way with our candy bracelets and necco's for desert.  It was a great night, set up was exciting- Caidence could not get enough of the blankets and pillows in the back, but when it came down to it she was all about the camping chairs outside.  After all of the popcorn tossing, and m&m eatting it was time for the movie.  She made it about half way through and then tuckered out in my arms......but forget about it if I tried to get up to put her in the back of the car!  So I sat there and snuggled my lovie, while Code snuggled in the back of the car with Easton, and we enjoyed the movie and the wee ones slept.  What a cute movie, and at the end- well I'm not going to ruin it for you- but lets just say that there was a little girl, playing with her toys with a tutu on, and all I could picture was that little chocolate face covered bundle of sweetness in my arms.  Then I got emotional....and I'm not even pregnant, so I can't even use that as an excuse anymore...jeesh, I'm such a softy!

C, c, and e

a sweet treat

my boys <3

and then she was barefoot...

in it to win it

this is just stinkin'cute

the time is now...

mama's latest tune:
Oh there's a whisper in the wind
Something's going on among the leaves
Can't put my finger on it, but its calling out my name
There's no mistaking what this day has to say 

It whispers in my ear and says…

Why don't you come out?
I'm waiting on you, waiting on you
Come out!
I'm waiting on you, waiting on cause
The time is now, the time is now

I turn my face up
Look at the dancing clouds
I got no rush to anywhere
I'll stand right here and take this day in
Make my mark on this moment
Play all the games that this day has to offer
I whisper in your ear and say…

Why don't you come out?
I'm waiting on you, waiting on you
Come out!
I'm waiting on you, waiting on
Won't you come out?
I'm waiting on you, waiting on cause
The time is now, the time is now, the time is now, the time is now…
Asha Ali...The time is now
*indeed it is the saab commercial...but it is such a sweet song, Easton and I have been having dance parties to it everyday here at Children's :)

Tuesday, June 29, 2010

SB clinic- take 1

There we were on Wednesday the 21st for E's first Spina Bifida clinic.... we got there before 8 (our apt was at 8:30) and we were the first ones there, so we sat with our bub in the dark waiting room.  Anxious, maybe even a a smidge nervous for what was to come.  Next came in a girl, I would say about a feshman in HS...walking with no crutches, no braces talking about basketball camp...hmmm must be sacral I thought to myself.  Next a boy with nothing but a huge smile on his face and friendly hello to everyone in the room in a wheel chair, and his mama carried a full body brace- Then this sweet little boy came strolling in with with AFO's playing his DS as he walked......that is when I sat there and really realized just exactly how diverse Spina Bifida is so unique to each individual...just like DNA, everyone has their own little blue print- but I noticed one common denominator...they were all just happy kiddos, doing and talking about everyday kiddo things.


So we get into our room and we sat there.....First up, Urology...probably the visit I was most nervous about, but then came in Dr. Williot (insert mental pic of Patch Adams, thanks cherie lol).  Great Dr, great personality and it was a good visit.  He examined him and talked about the next step for E, which is another renal ultrasound and a Urodynamics study, to test the bladder to see just exactly what E has been given in this area.  This is scheduled for August 3rd, and I will write more on it as it approaches.  I don't really know what to think when it comes to his bladder....but this will tell us, and we will go from there.  One step at a time.

Next up we see Dr. Thomas and Sarah, part of the Neuro surg team....our BFF's!  No just kidding, but I think it's safe to say that we have a pretty good relationship with them, I mean after all, we don't go more than a couple of weeks without seeing them.  We heard Sara tell Justin that she had Easton lol....I'm telling you, watch out ladies, he'll get ya wrapped around his finger, and he has a thing for brunettes- she is just about the sweetest NP that you would ever meet though, and I am pleased to say that Dr. Thomas will be staying with the office for a few more months before he moves on with his residency! YAY!  So Sarah did her thing, and then Dr. Li came in, and it was short and sweet because we had just seen him the week before.  They are great though, and I am so so so happy that they are his Neuro team....we really love them.

Then we saw the rehab ped, and she was very nice.  We had met with her in the NICU, and she gave us some good info.  A little more insight on his BM issues, so we have to keep an eye on that, and we will.

Orthopedic came in next, and this one was kind of a whirlwind....they were talking about how on Easton's hip X'ray his hip was starting to slip out of socket and I was listening to what they were saying, kind of, but thinking in my mind....what in the world is that man talking about, he's got the wrong kid- he has never had a hip X-ray, so finally I interupted and asked, and they were like the x-ray from a month ago- I was about to say you have it all wrong, but then his NP said it was from his shunt all made sense then.  So finally I got  it into my head that yes, indeed they were talking about our Easton and went from there.  So sweet baby E is in his "super man belt"  aka a brace that goes over his diaper and keeps his legs spread eagle for 18 hours a day.  This is hopefully going to get his little hip to stay in, and hopefully we caught it early enough to sqwash it.....but, and here comes that beautiful silver lining that I try to find in everything, but we may not have caught this until it was out if it wasn't for the shunt series that was taken last month since we are still playing with the pressure of his thank you to the shunt revision....  gotta love that silver lining.  I will say that E doesn't mind the brace at all, even the receptionist was shocked that he was so okay with it, he's so easy going.....and just wait until I have a chance to pimp it out- he'll be begging me to put it on him lol.  (just kidding, sort of - I like to think he will think it's cooler lol)

Finally we saw the therapist, and by this time Easton was more smiles, no more batting those long eyelashes...just done.  Not grumpy, just pooped from all of the flirting that went on earlier with the other nurses lol.  So needless to say, she didn't get to see all of his tricks, but he did show her enough for her to say that he is doing good, and I had to say that he has 2 pretty kick butt therapists in Jamestown!  She was good though, very observant, asked a lot of questions, and noted how he scrunches up on his right side a little more... she was quiet, but explained everything she was looking at.  First impression was good- and her name is Mary, so come on- she has to be good.  (right?!)

So that was about it, it was short and sweet, and now we know what to expect so we can be better prepared for next time.  Just wanted to share our first clinic with you!

oh and that sweet teen-aged boy in the wheelchair that we saw first thing that morning, we saw again at the end of the day when we were picking up E's brace....and he walked out of there with his body brace and a walker.... and flashed us that same smile and that friendly hello as he strolled on passed.  <3 

oh my beautiful life....

Listen to the sound and lose it
Its sweet music and dance with me
There is beauty in the world
So much beauty in the world
Always beauty in the world
So much beauty in the world
Shake your booty boys and girls for the beauty in the world
Pick your diamond pick your pearl there is beauty in the world
All together now.....

I have to say that this life of mine is pretty fantastic (not to boast) but for the last two days I have had a permanent smile on my face because of my lovies (they have been extra full of it, and extra adorable). Caidence is so full of mischief and now has this little snicker, that I can't help not to laugh, but at the same time am afraid to turn the corner to see what exactly is making her eyes give that extra twinkle.....and E, we've been working on getting a giggle for a couple days, and today he finally gave the double chuckle.  It was hysterical! Caidence and Easton are just simply amazing, and I have to admit that hubby of mine is pretty sweet too!  Here are some cute pics that will date back from the middle of May til the beginning of  June....enjoy the cuteness!

baby boys first day of really smiling

real men wear leggin's....sorry bub but mama loves those baby legs

baby E and his main squeeze Grace (he will really be thanking Nae when he's older for having such cute friends lol)

uncle Sti and baby E.... his first time seeing Easton out of the hospital. such a sweet moment.

"Caidence, paint the cow"

consider it done....and the percision with a paint brush lol...not bad for a 2 year old

E is certainly happy to be in C's bed....Caidence wasn't so sure at first though

sundresses + rain boots = mama's favorite

the first time Caidence shared her blankie with Easton...up until this day, he wasn't allowed to be near it... 
<3 the little things <3

very GQ

if only that sand was from sandy beach on Bailey Island ME....what I wouldn't give to smell that beach right now

bubble fun

she was too cold to run through it- 
so she stood there in her wet towel....

and when she was too tired to stand...she squatted.
Just couldn't get enough

the first day Easton swatted at a toy!!!! Yea for anti gravity movements lol


she went through and decided which flower pot was who's....and to this day, she still calls the big one daddys flowers.

her very own.... she picked that flower and carried it through out Walmart one day.

doesn't get much cuter than that

lovin' up her baby brother "eas" 
(she dropped the D, so he is no longer "Deas")

this pic just cracks me up because i think they are both trying to look tough
...or something...

Caidence's smiley face...yes he has hair and teeth...
and I believe that is a mustachio to the right of his nose
I will say Uncle Jeremy has the best face ever drawn on a  placemat hanging up at the BV :)

And a couple of my fav pics to finish up

more pics to come!