Sunday, August 8, 2010

Favorite Things...

It's time to lighten the mood around here, and what better way to do that then pictures!! :) I thought that I would go over a few of Grey's favorite things...in no particular order...

Being thrown in the air. It doesn't matter what is going on, if he is crying about something he instantly forgets all about it with just a slight toss in the air. He loves it!

Folding his hands together. I'm not sure why, but lately this kid has been folding his hands every chance he gets. Maybe he is trying to show off his sitting skills (look ma, no hands!) I'm not sure, but it's pretty darn cute!
Riding the bike with daddy...hahahaha! Yeah right! Take a look at the expression on his face! He is NOT a fan of the bike. I think that the helmet has a lot to do with his dislike of the bike...sorry kid, the helmet is a must! :) We made it to the park tonight without too much crying, although I pretty much had to ride RIGHT next to them talking about the park and the swings the whole time!
His car! He loves it! Even walking thru the garage to get to my car, he wants to stop and take a ride! He goes crazy with the steering wheel. I have a feeling that this guy is going to be a great driver one day!

Swimming! He is getting very brave and loves putting his face in. He is actually way to confident on those stairs and thinks that he can just do whatever he wants on them. He forgets that he doesn't actually know how to swim. :)

Carson! Whenever we will be somewhere with Carson I always say "You want to go see Carson?" and Grey laughs and laughs! He loves him. Loves petting his hair, loves taking off his glasses, loves to rest his head on Carson...I think that Carson is even starting to like Grey too. :)


Ok, here is a video of Grey showing off his skills on the steps and also showing off some new words! Andy and I had no idea that he even said this until we were home watching the video. "Ready?...GO!"
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Here is another video of Grey "jumping" in. We are so lucky that my parents have a pool, our summer would be so boring without it!
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I also wanted to say thank you so much for all of the thoughts and support after that last post. You will all be happy to hear that we are all pros at cathing and it really is no big deal. It meant so much to us to have all of those supportive comments after such a tough week. This weekend has been great and we are so over last week! :)

Love to all,
Leigh, Andy and Grey

Thursday, August 5, 2010

Reality...

Reality set in big time for us this week. We had quite a few appointments and learned some things that we were so hoping Grey wouldn't have to deal with yet. A few weeks ago Greyson had some urological testing done. He had had three UTIs in about a month and a half and we knew that things weren't right. We have always known that Grey has what is called a neurogenic bladder, that wasn't being completely emptied. Up until this point he hasn't been bothered by this and has been doing great in the urological department. He has had a renal ultrasound (ultrasound of his kidneys and bladder) at least every 4 months since he was born, and things have always looked good. Well, since these recent UTIs his urologist wanted to do some further testing. We went in one day for a renal ultrasound, VCUG, and urodynamics, (my SB peeps will know what I'm talking about, to everyone else...these are just extensive tests on the bladder and kidneys) praying that we wouldn't find out anything too severe and that we could get to the bottom of these UTIs. During the test, our urologist's resident came in and was watching as the technician took her pictures, and right away he had a look on his face that told me that something wasn't right. He explained that Grey has grade 4-5 reflux in his left kidney and a high pressure bladder. This means that instead of the bladder emptying out the urine it spasms and pushes the urine back into his kidney. This is not good. If left untreated this could lead to severe kidney damage. This is very common with kids who have spina bifida, yet we still felt shocked that it could happen to Grey (I know, we shouldn't have been shocked.) Grey has just been doing so well that I often times don't even think about SB. OK, that's a lie, I think about SB everyday...but I don't always think of it in a bad way. I think..."this is manageable, this is doable" Well, on this day it hit me hard. He does have spina bifida and it will effect him in so many ways for the rest of his life. Not to mention the fact that while we were waiting for this appointment Grey was playing with a little car and a little boy (probably younger than him) came up to him and grabbed his car and ran off. Grey screamed (not cried, but screamed) and then sat there watching the little boy play with his car. He couldn't do anything to get his car back, luckily the other mom brought it back over, but the damage was done my heart was broken and I wanted so badly to know what Grey was thinking. Was he sad, mad, wondering why that little boy could walk and he couldn't? Maybe he didn't care, I don't know. He started playing again and was as happy as ever, so most likely he is too young to even notice...but when will he? Ok, I got waaaay off track...back to the kidney...Well, a week after the tests we had a follow up appointment with the urologists to go over the results and come up with a plan. Here is the part that gets tricky. Do I tell the world (like the whole world is reading this or something) the plan, or do I keep this private for Grey? At some point he isn't going to want me talking to everyone about this, but for now, I don't think he cares. :) For those of you who are in our situation, or will be soon...I'm sure that you are curious and wondering. The plan is to start cathing 4 times a day and to take a low-dose antibiotic daily to prevent any more UTIs. We knew that this day was coming, and to be honest we were prepared and ok with it. We want to do whatever is best for Grey...we just wish that it wasn't needed. We wish that his bladder and kidneys weren't effect by the big bad spina bifida. But they are so we will deal with it. The first day of cathing was hard. Andy was a pro at it from the begining, me...not so much. The first day was spent being totally frustrated and crying to the nurse. Grey and I went back in and I was taught again...and now I am a pro. :) Grey is the best and just plays with whatever toy we give him and is as happy as ever. So as we enter this new phase, we are just taking it one day at a time...just as we always do. :)

Sorry this post is a little down, here is a picture to lighten the mood...

Here is Grey floating all by himself...we couldn't be prouder...

Sunday, August 1, 2010

stayin cool

Well its August now and the weathers really getting hot lately...But don't worry, Grey's found a way to stay cool. :)


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Wednesday, July 28, 2010

rollin downhill

Just the other day the three of us were hangin out and Leigh decided to start rolling down the hill in our backyard... Grey thought this was pretty funny and proceeded to try it himself. take a look for yourself!


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goof!

Tuesday, July 13, 2010

Grey's Mobile Stander and oh yeah, the 4th of July

Wow the fourth of July has come and gone already... We're a little slow to get some new photos of the Holiday Weekend up, but here's a few!

The weekend was great, we started by going to the parade. Grey didn't care too much about it, but he was into giving everyone hugs (we weren't complaining)
Here he is giving his cousin Olivia a great big one :)


We made our way to the park for lunch...and took pictures (big surprise) :)





Not too long ago Grey's therapist brought over a mobile stander. What's a mobile stander? Well it helps Grey work on standing, but also allows him to move around freely, because it has wheels. I'll be honest, when i saw it I was like "oh man, that thing's a big giant contraption, how is grey gonna work this thing?" WE'll it took Grey about 2 seconds to figure this one out and he was off! He loves it! So while we were at the park we took over the tennis courts and he showed us his moves. He's really good at it! :)

this is what it looks like.



I'm not gonna lie, it was kinda hard for both Leigh and I to see the stander, i mean it basically resembles a wheelchair and it was just one of those weak moments we had as parents. But when Grey was in it, laughing and smiling it kinda didn't matter anymore. He's amazing and I love him!

Here's a short video of him showin off.

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Ohh yeah and we celebrated with fireworks!


Love to all,

Andy, Leigh, Grey


Saturday, July 3, 2010

SB Conference...

Andy and I had the opportunity to go to this years National spina bifida conference. We went with our friends Nate and Emily and although we had to leave our boys behind, we managed to have a great time! While there I was able to meet the first mom that I spoke to after finding out about Grey's SB. What a pleasure it was to meet her face to face. Seeing her son Nate run around was even more amazing than I thought it would be. I was also able to meet another mom who has answered many of my questions over the past year and a half, and a sweet baby girl and her parents who makes me smile every time I see her sweet face. Putting real life faces to these names that I know so well, was such a great feeling. Having a child with SB is an automatic entry into this club that I'm not always thrilled to be in. However, this club is full of amazing families and kids who I cheer for everyday. Seeing Jet stand up, Annabelle moving right along, Katie do a jog-a-thon, Nellie take steps with her walker, Alex scoot forward, Brenden with his new walker, Roman working out on the lite gait, seriously the list could go on and on...these kids are such an inspiration, and their families lift me up when I need it. Their moms (sorry dads, but the moms stick together) can answer my questions and calm my fears, but above all...THEY GET IT!! They cheer right along with me when Grey reaches a milsestone that at one point felt unreachable. But...back to the conference...

This conference was full of families like ours! I have never seen so many wheelchairs, walkers, crutches, AFOs in my life! It was GREAT!! The conference lasted Monday-Wednesday and was FULL of valuable information. I won't lie, there were times where we were on SB overload but for the most part, we learned so much and had a great time! I'm really looking forward to next year...ANAHEIM, CA...we're hoping that we can make it...WITH Grey this time!

I hope that you are all enjoying this wonderful holiday weekend!!

Love to all,
Leigh, Andy, and the G-man himself

Couldn't leave you without a picture!
Here is Grey working on standing! He is now able to stand leaning onto something for about 10 seconds!! WOO HOO!!