Wednesday, September 23, 2009

One year ago today...

Leigh and I started a blog. Here's how it all started.

I've been thinking about this quite a bit lately... It's been exactly one year. One year ago today my life was flipped completely upside down. Seriously, I can recall the day's event as if I were watching it on a 52" HD TV. It's still that vivid in my head and will be one of those events that stays with me forever.

I remember the hours before the ultrasound feeling so excited!! To the point I couldn't concentrate on anything, I couldn't sit still, I was just soooo anxious to find out if we were having a boy or a girl. Admittedly, my fingers were crossed for a boy :) Finally it was time and Leigh and I made our way to the doctor's office both very anxious yet giddy. This was going to be great...and it turned out it was, the ultra sound nurse confirmed what I had been hoping...A BOY!!!! At this point the smile on my face extended passed my ears, and Leigh was the the same, tears of happiness from us both.

We left the office practically walking on air, we were SOOO HAPPY. In fact, at the time, it was one of the most emotional highs I ever felt. Throughout all the excitement we found that we were pretty hungry, and what better place to celebrate than a local Wendy's!! haha. There I was paying for our Junior Bacon Cheeseburgers when Leigh's cellphone rang and she said "Huh, it's Dr Lagrands office...I hope nothings wrong" After the conversation on the phone the only thing we knew was that they wanted to go over the ultrasound images with us. That's all they would say. At that moment my heart fell onto the floor of that Wendy's. (I still can't and might not ever return to that Wendy's, even driving by it, I get a weird feeling).

I remember returning to the doctor's office and having to wait in a room, the very room that 20 minutes earlier I had feelings of complete blissfull happiness. That feeling was gone, and wouldn't return for a long, long time. I was praying so hard that it was a technical error, like something went haywire with the ultrasound machine and they lost the results and we'd have to do it again or something. I was praying for a "Hey guys, sorry to have you come back, but these stupid PC's crashed again and we lost some of your ultrasound images...we gotta get a MAC." type response from the Doctor.

He opened the door and with the ultrasound in hand, he almost immediately spoke the words no parent wants to hear,
"This is not what we want to see." That's what he said, those exact words, I'll never forget them... ever. He then started showing us the ultrasound and talking about how my sons head was shaped like a lemon and that this was a sign that he may have spina bif-a-something. I didn't know what he was talking about and felt the inside of my body and head erupting into the most horrible fear/panic/hurt/anger I have ever felt. I remember the print off he handed me explaining what spina bifida was, and on it was every possible horrible/awful thing you could imagine. I still couldn't make sense of it. He explained that he didn't see a hole in the spine, and therefore we'd have to go to another specialist to look closer in the morning. He assured us that whatever it might be, this would not be a "normal" baby. I remember holding Leigh tightly trying to comfort her, trying to be strong, wondering how we were gonna care for a baby like this.

Devasted. Afraid. Scared. Angry. Pretty much every emotion that didn't involve joy or happiness we felt that afternoon. My darkest day.

The next morning we went to the specialist where she gave it to us straight.
"Your son has spina bifida." It was confirmed. It was our new reality.

A year ago today we were told our baby may never walk.
A year ago today we were told our baby may have brain damage.
A year ago today we were told our baby would have bladder and bowel issues.

A year ago today...we were given the option to terminate the pregnancy.

I cant even begin to describe the emotions I feel when I start to wrap my head around the possibility of living my life without my son, and the fact that the option to give up on him came up so "casually" from the doctor. Ughhh, it gives me a stomach ache just thinking about it. Speaking of stomach aches, I had one continuously for months after finding out about Grey's spina bifida. It just lingered with me everywhere. I wanted to feel normal again. But as with most things, time heals. And this was no different. The feeling of despair and anger slowly turned to hope. Hope is a powerful force, more powerful than I realized.

If I were to measure the amount of growth I made in this past year as a person I'd say it crushed the Richter scale. I was knocked down to my lowest low and had to rebuild. I kept some of things in me, but dropped a lot of things that were getting in the way of making me a better version of myself.

And so I sit here today watching my son (a son whose head isn't shaped like a lemon, and a son who doesn't have brain damage) crawling, laughing at his winnie the pooh piano, playing with his mom, and it makes my heart burst with love!!! I thank God every single day for my family, and for His perfectly crafted gift to us, Greyson Neal Gibbs.

thank you all for your love,

Andy, Leigh, Grey

Friday, September 18, 2009

Our neurosurgeon drives a mini cooper...

Andy says that he just earned mad points in the "coolness" department. I should also mention that he IS NOT a small man. Anyway, back to the point of this post...Grey's MRI results...they were pretty much what we thought that they would be. The Dr. started by saying that Grey's ACM II (malformation of the cerebellum) was present, but that it had good flow, and since he is showing no signs of it being symptomatic, it most likely never will be...very good news! He also said that Grey's spinal cord is tethered (100% of people with SB have a tethered cord) but that doesn't necessarily mean that it will cause problems. He said that the most common times when tethered cord issues arise are during growth spurts, so around the ages of 3-4 and 10-11, but like I said, it may never cause a problem, it's just another wait and see. He also mentioned that Grey has a small syrinx very low near where the cord is tethered. This is another thing that could cause problems at some point, but again, may not. One last thing that the Dr. mention was that Grey has something called corpus collosum dysplasia. I am NOT going to google this as I'm a bit terrified of what I will discover. I am going to take the Dr. at this word and consider this "no biggie." This is something that could effect coordination. These are all "normal" in the world of spina bifida and the Dr. was in NO way concerned about anything at this time.

So, overall, we have a positive outlook and a good feeling after that appointment. We know what to look for should any of these "maybes" come up. In the meantime, we will keep lovin' our boy! I should also mention that the Dr. was VERY impressed with Grey's sitting, rolling over, and crawling. Sure, he REFUSED to crawl on cue, but we threatened to pull out the videos and the Dr. believed us. :) Have a great weekend!!

Leigh, Andy and the G-man

Monday, September 14, 2009

Long Day...

As with all things Greyson...What were we so worried about? Grey did amazing!! I fed him last night around 9:30pm and the MRI didn't start until 11am and we barely even heard a peep! He was his laughing, smiling self all morning long. He got a bit antsy around 10ish but fell asleep. The MRI lasted about 2.5 hours and we were able to see him before he even woke up. I went in and said something to him and got a smile right away. We stayed in recovery for about 20 minutes and then went into our holding room (or whatever it's called) fed him, and 20 minutes later we were on our way home! We were at the hospital for about 7 hours total, so it was a pretty long day and we are VERY happy to have this first MRI behind us. His shunt was checked as soon as the MRI was finished and he hasn't shown any signs of something being off with that. He is such a little trooper and of course, all of the nurses just loved him! We are yet again, reminded how lucky we are to have been chosen to be his parents!!

Now the waiting for Friday begins, to be perfectly honest, we really aren't too worried about it. Grey is just doing so well, that we know whatever we are told, we can handle. Thank you all so much for your thoughts and prayers today! We will update again this weekend and let you know what we find out on Friday!

Love to all,
Leigh, Andy, and Grey

Sunday, September 13, 2009

Big Day Tomorrow...

Tomorrow, Grey is having his first MRI. I know that he will breeze through the day like a champ, but Andy and I...not so much. :) Grey's neurosurgeon just wants to get a baseline MRI while Grey is happy, meaning when his shunt is working and he is showing no symptoms of something being wrong. This will be a full brain and spine MRI and will last approximately 2.5-3 hours. Because of the length of the test, Grey will need to go under general anesthesia. One of our major concerns is Grey's shunt. His shunt is programmable by a magnet, so as you can understand, the idea of Grey being surrounded by a HUGE magnet for 3 hours is not something we are looking forward to. His shunt will be programed back to to right setting as soon as the test is done, but we just worry what the change in pressure for 3 hours could do. So if you could just keep little Grey (and his mom and dad) in your prayers tomorrow we would be very grateful. We won't have the results of the MRI until Friday, but we will update once we get them. As far as the results go, Dr. Foody is looking specifically at the severity of tethered cord, Arnold Chiari malformation, and any possibly syrinxs. (I wouldn't recommend googling ANY of these things as Google has a unique way of scaring the pants off of anyone looking up info on any sort of ailment.) But really all these things are actually quite common in kids with SB.) :) Grey is doing GREAT so even if something pops up, we won't let ourselves get too concerned. Thank you to all who continue to go on this journey with us, we love you all!

Leigh, Andy, Grey.

Saturday, September 5, 2009

It's Official...

HE'S MOBILE!!!!!!! :) We are SO proud of our Grey and couldn't wait to share it with all of you! He started scooting on Thurs. and today (Saturday) he is just going all over the place! YAY Grey!! :)

Oh...AND he has his first two teeth!! Grey has been very busy this week! :)

Love to all,
Leigh, Andy and Grey

Thursday, September 3, 2009

Back to "School"

I'll always remember that feeling i would get around mid-to-late August every year. The Back-to-school ads would pop up more and more and I would become heartbroken...because summer was coming to an end, and school was around the corner. I remember the first time post-school, when i had graduated and somehow found a job soon after and that summer turned to fall... I had to convince myself that "hey wait, im done with school, no more of this, I can enjoy this time of year" And that's what I've been doing every since.

So wait where was I going with this...Oh yeah, School. Thankfully I'm done and there's been several occasions I've turned to Leigh and have mentioned how glad I am to be out of school. haha (sorry to rub it in for those still studying, keep up the hard work :) hehehe. Anyway, what i was getting at is that our little Grey starts his version of School next week. After having the summer "off" (not really, Leigh pushes him hard during the day) Grey will resume his Physical therapy. Tuesdays he'll be at the conductive Learning Center, Wednesdays he'll start a new class for babies, Fridays PT comes to the house. And Leigh just informed me that she will be signing Grey up for a swimming class!!! Wow, this kids gonna be busy! But this busy is a "good busy." We've already have seen results of working hard with him. It's truly amazing to see Grey hit these milestones as any other "typical" baby would. We're just really proud of him!!!

Remember how I said I've been enjoying the fall...we'll here's a few pictures of us doing just that!

Grey just being cute.

Love you Mommy!

Kisses for mommy.

Love you daddy

"Here Dad, let me fix your hair"

love you all,

Andy, Leigh, Grey