Thursday, September 23, 2010

2 years...

How can it possibly be two years already? Two years ago tomorrow, my life changed in a way that I never expected. Changed in a way that now almost defines who I am. September 24, 2008 was the day we found out about Greyson's spina bifida. I won't go into detail about that day...you all know it by now. Most of you reading this have had your own day. As I sit here tonight, I can't help but wonder if there will ever be a time where I feel like that person again. The person I was before September 24, 2008. That person didn't know anything about spina bifida, tethered cord, hydrocephalus, AFOs, the difference between a programmable vs. non-programmable shunt, the signs of a shunt malfunction, what a VCUG was, what a urodynamics was, that person most certainly COULD NOT cath someone. That person didn't lie awake at night feeling like I didn't do enough PT that day, or lie awake going over the pros and cons of getting KAFOs over AFOs, she didn't worry about appointments, or make a list of the different medical supply companies to call trying to find the right catheters, or know the fear of the surgical family waiting room... BUT, that person didn't know how much she could love another person. Didn't know what it was like to cry tears of joy over her baby sitting up by himself for the first time, or rolling over. She didn't know what it would sound like the first time her son would say "mama" the or what it would feel like the first time he would give her a hug. She had no idea how she could just look at his face and know exactly what he needed. I never knew this kind of love before and I am SO GLAD that I will never be that person again. The person who took things for granted...took life for granted. As hard and as sad as that day was...my life has changed in the best way, I have become the person that I was meant to be...this little guy's mama...

Friday, September 17, 2010

MRI results

GOOD NEWS!!! Today, we had our appointment with Grey's neurosurgeon and his MRI hasn't changed from last year! His doctor explained that the changes in his bladder are most likely due to the bladder maturing and changing. His tethered cord, syrinx, and arnold chiari malformation haven't changed at all!! He was pleased with the progress that Grey is making and we don't need to go back until our next scheduled clinic appointment which is in May!!! God is SO Good!!

Our Little Rockstar

Tuesday, September 14, 2010

MRI Day...

Waiting...Waiting...Waiting. Grey has been back for about an hour now and we are thinking that it will take another 1-2 before the MRI is complete (depending on if they want to use contrast or not, they won't know until they start) To say that Grey was amazing this morning would be a GIANT understatement. He. Did. Awesome. He wasn't able to have anything to eat or drink and you would never even know it. I did hear "I want chiPPPP" "I want cheeeeese" "I want deenk" and "nack" (snack) quite a few times, but there weren't any tears or tantrums. He just read books and played while we waited. Grey makes being his mom so easy. :) I just love that boy!




We have our appointment with Dr. Foody, Grey's neurosurgeon on Friday and will let you know what we find out. We are praying hard that his tethered cord and syrnix are both stable and that a surgery won't be in Grey's near future. Keep those prayers coming! :)

This video isn't from today, but it gives you an idea of what we heard this morning. (Don't pay any attention to the fact that he is sitting in a laundry basket watching the spin cycle. :) His favorite stuffed animal "orie" was in there and he likes to watch him take a "bass" (bath)).
video

Wednesday, September 8, 2010

BIG update!

Where have we been? I feel like it has been ages since we've done an actual update on how things are going over here...so here goes!!

Here is Grey on his first day of school
(I know he looks like he's going to College...but no, he's still just a baby. :)

This past week Grey started back up at The Conductive Learning Center and I couldn't have been more excited! We had the summer off from most therapies and I was itching to get back into it. There is only so much that we can do on our own here, and it is always nice to get a fresh perspective on things. Already in this first week, Grey stood at the bar for the first time all by himself! It only lasted a few seconds, but those few seconds were pretty amazing. :) I couldn't wait to call Andy when class was over to tell him what a great day Grey had. We go everyday from 8:30-11:30 so it took a few days for Grey to adjust to the new schedule but he is now back in the swing of things and doing so so well! We are so proud!

This is Grey's new "smile for the camera" face

Grey is also starting to talk up a storm! He now can say "ready...GO!" "one two three" "All done" "I deenk" (I drink) "tee-eee" (TV...not super excited that he is saying that one, but he loves to play with the remote) "own" (phone)...swing, slide, chip, mommy, daddy, grandma, papa, yes, no, shirt, sock, nice, down, up, in, out...all of those have their own variations and he pretty much repeats EVERYTHING that we say. It is just so much fun to hear all of these new words. We will for sure get some video of this soon! He is also pointing to most of his body parts (eye, nose, mouth, ear, toes, hair) We pretty much think that he is the smartest person ever...seriously. :) He also fake yawns which is hilarious...my favorite!
Overall, things here have been going pretty great! Grey does have an MRI coming up next week that we could use some prayers about. His urologist and neurosurgeon want to get a better look at things to make sure that his new bladder issues aren't due to his tethered spinal cord or his syrinx. We are praying that his bladder has just changed on it's own and that we can continue with what we are doing without having to think about another surgery. Please keep us in your prayers next week! The MRI is on Tuesday and our follow-up appointment with the neurosurgeon is on Friday. Thankfully we won't have to wait too long to hear the results.

Here are some of our recent pics...we just can't get enough of this kid!!

Ugh! What can I say? I just love him!!

Playing with play doh...such an artist! :)


Grey working on that standing...he's gettin' good!


OK, as I was typing this, I decided to see if I could get some "proof"...here it is!! ENJOY! :)
video

Sunday, August 22, 2010

just a few family pictures

Hello all,

Last weekend grey was zooming around in his stander (he's getting better everytime) and when he finally came to a stop we decided to snap a few family pictures. He's the best!

love,

The Gibbs'




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!"
video

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!
video

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...