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

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!

Saturday, June 26, 2010

Batters up for Easton

Holey Moley, what a day we had on the 13th.  It will be a day that we will never ever forget!  My friends did such an amazing job planning E's extravaganza....some may call it a benefit, but I feel as though extravaganza is much more fitting for what went on that day!  It was so beautiful that even almost two weeks later, I am finding it hard to write about it. The girls had it all set up, the chinese auction, the live auction, the fields....everything just looked so wonderful!

The day was started out with just a little service that our church put on, just a blessing of the day if you will, and of course I bawled the whole way through it.....then we did the walk, and of course Easton was happy as a clam the entire walk, smiling and cooing.  Julie and Wad Moore had balloons made that said, "Zion loves Easton", so everyone on the walk carried a blue balloon!  It was quite the site to see :)  We of course brought up the rear because we had a little girl who wanted to walk herself...or be carried the whole way, lol.  But it was a fun start to our day!

When we got back......oh mama when we got back...  There were loads of people up there at this point, as all of the wiffle ball teams were registering, and the walkers had just returned, and we were asked to stand in a certain spot..... our friend Kimmy started talking, and thanking everyone, and to be honest I was ready to bum rush her hug her, and then everyone else there!  So there we were, just taking it all in, everyones smiles, everyones love and Kimmy said that there was a certain someone there for us to meet.......and wouldn't you know it but none other than Adam Page walked around the corner!  Goosebumps....and then I completely lost it.  We have honestly been talking about Adam Page, since we saw his article in the Buffalo News when E was only days old, and there he was....walking up to us!  That was a moment I will never ever forget!

The wiffle ball started and we went and chatted with Adam and Sandy for a bit....and can I just say, what a wonderful family!  So amazingly nice, and I think I just rambled on like a nin, and I really hope that my words made sense!  We were so surprised, and honored that they would come down to meet our Easton and be a part of his day. 

It was such an amazing day!  The live auction was hysterical, the chinese auction baskets were incredible, the wiffle ball went untill 8 o'clock, and I'm fairly certain that there was some trash talking going on from the older guys to the younger undefeated 15 yr olds....must've felt a little pressure from the young bucks lol, all in good fun no doubt!  The volunteers were phenomenal, thank you guys were absolutely amazing!  Thank you to all of our sponsors, thank you to everyone who came, thank you to the girlies that put it on....the one word that I keep coming back to is beautiful...the day was beautiful.  The sense of community was incredible, and I am proud to say that Frewsburg ROCKS, and heck yea I grew up there lol! It was so beautiful, I wish I could just bottle up each and every part of the day.  Everyone's face had a smile on it all day, the weather, well the weather was a little iffy, but that did not stop one of those wiffle ball players- we had grown men out there in the bare feet, soaking wet- just having a good time.  I think everyone just had a good time... all the little kids running around with their face painted, hair sprayed crazy colors and their cotton candy!  All the men with their little wiffle ball bats all taped up with duct the pros that they all are. ugh there were just so many fun things going on, and I really hope that everyone had as fun of a time as we did.  With all of that said, I do have one regret, and that would be the fact that I didn't get to chat and see everyone there.....I felt as though I blew a few people off because I had to be here or there, and I just really wish I had a chance to sit down with every single person there to let them know just how much we appreciate if you are reading, and we didn't get the chance to tell you- we truly do appreciate all of your love and support for our family.  We love each and every one of you! 

Like I said, it was a day that we will never forget. Thank you for giving us the opportunity to show off our handsome little man (and his sassy but sweet sissy too!), and thank you so much for all of your support, we are beyond blessed.  With all of  you by E's side, there will be no stopping him, he will be able to achieve anything that his little heart desires.....he's got a whole community there to back him up, and to pick him up when he falls.  Lucky boy :)

Love to you all from the Rapp's

Daddy and Caidence on the walk

Meeting Adam Page for the first time.....I think we were all a wreck at this point!

That's just cute!

Adam and the Rapp family

Sweet baby E and his favorite OT ever <3

Did you kick some wiffle ball butt cousing Kole?!

Oh That sweet baby E

A little Live auction fun!

Even Johnny Cash was in it to win it, the rain didn't stop anyone from having fun!

Uncle Sti and Aunt Am talking strategy for next year ;)

The 2010 Batters Up For Easton champions

*I know there are so many great pictures out there, many on facebook, I just need to learn how to take them off of there and put them on here....I'm certain there is a way, I just know that I am not going to figure it out expect more pics soon!*

What a day!

Monday, June 7, 2010

My friends are just simply amazing

Well, here we's June 7th, which is so hard to believe.  Where is the time going?!  I'll tell you where all of my friends time has been going these past few months...towards an unbelievable benefit for our Easton.  They have been working so hard on "Batters up for Easton" and I just want to tell the world how much we truly appreciate what they have been able to put together in such a short period of time.  It really is amazing.  It's turned into way more than I ever had imagined. 

When they approached us about a wiffle ball tourney in honor of E, I had pictured just all of our friends up there hanging out playing some good old back yard wiffle ball just having fun......and they have turned it into a huge day of fun, food, festivities and love for bub.  I still can not come up with the right words to truly express how I feel, to show how much we appreciate it, to show how much we love each and everyone of them.  They have blown us away, and all of the sponsors have too- It is going to be a day that I don't know if I will ever have the right words for it- I've been trying to come up with them for months and just nothing compares...I always end up coming up short, and this is something that I just feel like I may never be able to put into words.  It's a tears in your eyes, lump in the back of the throat, knot in the pit of your stomach feeling of gratefulness is what it is. Thank you guys for everything.... <3

I don't know that anyone will ever really know how this makes Cody and I feel.  It gives us a chance to take advantage of opportunities that we maybe wouldn't have been able to take advantage of otherwise.  I don't want to say it takes away some of the burden, because nothing about Easton is a burden...nothing.  But it does take away some of the worry of  not being able to do everything that we possibly could for our son, or provide him with some aids that could really have helped him...but I think even more than that, I find great comfort in knowing that so many people out there are rooting for our little guy.  That so many people love him and don't even know him- that our community is coming together for a day to support support and encourage our little Easton.

Of course he has no idea what is about to be on Sunday, and even though I have no doubt that he will smile and coo at just about everyone, it will not be until much later that he fully understands and appreciates this day, and my one hope is that he takes that feeling, that feeling of love, and support, and encouragement, and community and hope and togetherness and embraces it, and then finds someone in this world who needs that exact same feeling and does whatever it takes to give that feeling to them.  I want him to pass along that feeling, just as we will.  I know that this will make a huge difference in his life- I know that all of you will make a difference in his life, and I know he will make a difference in all of ours.  He is an amazing little boy- with or without the SB.... and it brings me to tears that so many of you have reached out to him. 

If there is one thing that I have really learned is that we are blessed beyond belief.  I would not change one single aspect of our life.  Our life together as a family is beautiful, and in many ways just as we had imagined it, and in a few ways even better than we ever could have.  So I'm gonna leave you with that: and say thank you to all of you who have helped with this day, I am so excited to just be with everyone....pee your pants kind of excited.  (I know a grown woman has no business saying that to the world, but I really am so excited!)

love from the Rapp's and hope to see you on Sunday! <3

Wednesday, June 2, 2010

Chasing the shade....

Before I begin I am just going to go ahead and pics again.  I can't get the pics to upload on the computer.  Big bummer but I promise as soon as I get a few more minutes I will try to play with it some more because I've got some really cute ones to share, so one of these days you are going to look and there is going to be a boatload of pictures of my sweets, and their friends too!

Back at it...

Well, E and I have spent a majority of our days chasing the shade.  I have to say for western New York, we are doing pretty well in the sunshine department, and there are no complaints coming in from this girl.....I say bring it on summer...bring it on.  Caidence on the other hand has spent the last week or so chasing anything but the shade...she chased butterflies, chased the birds....the bugs (well, kinda- we've got a total girly girl on our hands who shrieks everytime she sees a bug, but she does love to hunt for them), the dogs, the sunshine...she has been a very busy girl and has loved every minute of it.  We have literally been outside every single day, Nae and E have even been napping outside which has been if only I could get them to nap at the same time I could start one of my new books :)

We have busy planting our flowers and I am very proud to say that we have morning glories coming up on one side of the trellis.  Our fingers are crossed that the right side will sprout a few, but if not no biggy....we will claim a victory non the less for our first attempt, lol!  We went and picked out flowers for our pots the other day and Caidence picked out a pink, fuzzy flower (I don't remember the name right of the top of my head), but she was very cute while picking it...."that one, mom mom"..."this one Nae?" ...."no that one"....very specific and particular that little girl is- I hope she stays that way, especially when picking out boys when she's older, ha!  She has been so wonderfully amazing lately, I just wanna kiss her face about every second cuz she's just so darn sweet.  Although I will say she all of a sudden has this growl/screaming thing going on when she wants my attention immediately which is not so sweet, but we are working on that!

As far as "Deas" goes....we started OT with Anna, and it went really well, we are just really working with him to start using his arms and start to reach for things and to stop "chicken winging it"- no that is not a pt or ot term, that's a mama term, and believe me there will be many more of them to follow.  I don't know that he is tracking as well as he was, but all we can do is continue to work with him.  I will say on Sunday the 30th he did hit his lion that has a chime in it for the first time....I was jumping up and down like a nin, so excited for him.  He focuses great on you when you talk and play with him, and it takes all of a smile from mom mom to get one back, but it's when you move around to try and get him to track, he kind of gets a little side tracked and loses focus...maybe he has a bit more of me in him than we think, poor kid LOL.  He is still as sweet as sweet can be though.  I will say, and I really probably shouldn't but I am a bit suspicious of his shunt.  He has been a little on the sleepy side lately, but it could be a number of things, but I automatically go straight to the shunt....somedays I don't know how he still has hair on his head because I rub his soft spot constantly.  But please don't worry, leave that up to us, and I'm sure it's nothing- it's been hot so if I were a lil babe I would sleep all day too!  E weighed in at 7lbs 14oz last week, but I will say that he had on a wet diaper and a onsie so he really weighs a smidge less than that, but hey, he's a 7 pounder now!

This week is kind of  a quiet week for us, all we have is PT on Friday and part of me is saying thank goodness for that.  Last week was a 'drag your knuckles' kind of a week....I got a phone call from Bev, our service coordinator and she let me in on the fact that Caidence will be getting comes a whirlwind of mixed emotions that I just can't shake, and I just don't understand it.  She told me that she was diagnosed with apraxia which was an automatic qualifyer.......I'm sorry but this kind of came out of left field, and I still can not accept it.  Yes, I had her evaluated, yes I know she is a little delayed and has articulation problems, and Yes I really wanted her to qualify....but a diagnosis?!  Apraxia?!  I did some research and yes she does show some symptoms, but I also think what she does show is almost just normal for someone her age.  I mean she can blow bubbles, she can move her tongue side to side, but yes she does call her juice "ap juice", and Easton is "Deas" so I just don't know.....I don't know why I am still even on this, but I guess my shoulders just feel heavy......I guess I'm not sold on it.  I mean with Easton, his diagnosis was in your face obvious....there was no denying the fact that he had SB, but with C I'm just not so sure.  And like I said I don't know why I'm dwelling on this- I was slightly annoyed when I didn't think she would qualify because she did so well on the receptive part of the eval, and please don't get me wrong- I am so happy that she qualified so our little babe can really start telling us what is going on in that pretty little head of hers, I just wish they didn't slap a diagnosis on her after an hour long eval.  I guess it's just the "label" that I am having a hard time with because it's not so apparent to me.  Enough of me complaining though, bottom line is Nae is getting speech.....Hooray for that, and like I said I can not wait for her to really start chatting it up with us!  We have our IFSP on Monday for her so we will know more detail then....woo hoo!

Kimmy took amazing pictures of Easton, and a few of C too!  They turned out so cute, and our session got cut short due to Cody not feeling too hot, but none the less got some cute pictures of the kiddos! Can't wait for Nae's pics!

Oh jeez, there's so much more but I have to get to a kitchen that I promised Tordella's I would have done for tomorrow, I'm not going to lie it kind of felt good to walk back into the store today.  I do love it there, I love the people, but I also do know that my kiddos need me more now than they ever will and I am so happy that I am able to stay home with them and love them up and play all day!  Life is good right now, and I wouldn't want it any other way.....I love being home with my sweets, but it also does feel good to help the store out a little bit when I can!

Well, that's it for now, and like I said, as soon as I get my camera figured out you will be able to enjoy the last few weeks at the Rapp's as much as I did!  Love to you all!