Tuesday, October 5, 2010

Need a new shirt?

A fellow SB mom, Kari, had the great idea that we should come up with some sort of shirt for our online SB family! I totally agreed and thought that this was a great idea!! Since Andy is a graphic designer I enlisted his help! :) (he loves it when I do that!) So, the other night the two of us put our heads together and came up with what I think is a pretty sweet shirt that represents SB and what it means to us!! Here are a few pics of Andy and Grey working on the shirt...

And here is the final shirt...

The front...

And the back...
To us...the line on the back of the shirt is the spine, and the words make up spina bifida.

So...if you are interested in ordering one, you can go HERE and find all of the info!! I'm so glad that we could do this and I hope that you all enjoy your new shirts!!! :) You will only be able to order the shirts for ONE WEEK...so get your orders in NOW!!!

Love to all!

Sunday, October 3, 2010

A Bike for Grey...

A few months ago, Kelly, an OT that we know, emailed about an organization that was donating some Amtrykes to local kids who could use them. She thought of Grey and I am so glad that she did!! Yesterday, Grey received his bike and after a rough few minutes...decided that he loved it!

Here he is checking out his bike before it "officially" became his.

Mommy, Grey, and the new bike!
Quite a few people gathered around Grey once he was on it to check the sizing and he wasn't really a fan of all of the people.

Why are you all watching me?

I had a feeling that a cookie might help. :)

Once we were home, he became a real pro at it!

This morning, he loved it even more!

I have to add a pic of his new trick...I think that my fellow SB moms will enjoy this one. :)

Here he is loving his new bike!! Ambucs, Amtryke, and KELLY...thank you, thank you, THANK YOU!!!

PS...the OT, Kelly, that I mentioned...is now the mama to a beautiful new baby Grayden...who just happens to have spina bifida. He is almost ready to come home and we can't wait to meet him! Lots of love and prayers to Austin, Kelly, big brother Zander, and of course...baby Grayden! You can read their story here.

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)).

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! :)