Wednesday, February 16, 2011

As promised

Now for the GOOD of the surgery.

I've spent so much more time emphasizing what has gone wrong and the negatives since surgery, it's time to share the wonderful changes we've seen.

First his smiles...I cannot get enough. I keep taking photo after photo after photo! There are never enough smiley photos for me. Before surgery, I was lucky to get a real smile (not seizure associated) very seldom. VERY seldom. A vibrant smile where he's not only smiling with his mouth, but his eyes too.

And that LAUGH! Oh my goodness. I don't think many people even knew what an Austin laugh sounded like. They were extremely rare. I'd get giggles or chuckles from time to time and the very very occasional belly laugh. Always short-lived though. Now? I hear them ALL THE TIME! A silly face or sound is enough to get him in stitches. Absolutely amazing!

The walk. I didn't fully realize until just this weekend (exactly one month after surgery to be exact) just how much his walking/balance has improved. We were extra cautious with his free walking (putting the helmet over his incision and of course because of the seizures), so we were walking him by hand this whole time. Even then I knew there was improvement because it was so much easier. Instead of dragging his feet, hanging, and wobbling all over killing my back, he just walked. Like a feather. Also, before surgery, he'd run back and forth across his playroom with his head down making noises and balance was so bad. Tripping, stumbling, and just generally wobbly. It's like a night and day difference. He walks with his head up looking for things to explore. The video I shot doesn't do him justice. I think he's over stimulated in his playroom now (I need to get cleaning some of that stuff out), but it's the only place I felt comfortable letting him go without being right beside him (so I could hold the camera). Typically, he likes to stay out of there and likes to take his time walking and looking around. Like a different child, I swear. I think the improved balance has also made the difference in climbing on the couch too. He started doing that late Oct or early Nov. It was difficult for him though and he actually quit doing it altogether before surgery. He doesn't have an overwhelming desire to get on the couch most times, but I can put something he wants up there and he climbs with ease up to get it.

Then there's the attention span. Devon, you can vouch for this. Unless he was mouthing a hand held toy, he would give something 10-30 seconds..tops. He had very little interest in anything anymore. He may try to work it briefly, but then he was up ready to move. He has puzzles that we couldn't get him to finish. Now, he can sit there and take every piece out. And that Leap Frog barn toy. I cannot count the time he's spent playing with that thing. I'm not kidding when I say he can sit there completely content playing with it for 10-15 minutes. MINUTES!!! Probably longer if I could handle it. It has removable magnets and a push button chicken that plays music. He first started just trying to take out the magnets. Then he'd rub it over and over (typical pre-surgery Austin move). Then, just like he always knew, he started pushing the chicken instead of rubbing it. Now he pushes it with one finger. I think we've been working on that for over TWO YEARS! He's done it before, but I don't think it was intentional. There's absolutely no doubt now. Trust me, he does it over and over. And over! And just to test out the consistency, I've introduced other toys with push buttons. He's not quite as interested in that many other ones, but his new skill is consistent. And the barn toy has found a rival...the steering wheel (although not quite as pleasant to listen to -lol).

Let's not forget the increased vocalization. Seems like every week he takes on a new persona. One week he was affectionately called Goat Boy for his crazy goat sounds. He's been the emphysema patient (he'd cough to get our attention and to tell us "no"). He was the gasper last week -thank goodness that one's played out! It sounded like he was gasping for air and he'd do it over and over. I even took him to his pedi. You should have seen some of the looks I'd get when we went out. Imagine a kid laughing really hard and trying to catch his breath with a loud gasp (only subract the laughing). He wasn't used to laughing so much, it was like a new sound. A new sound that he wanted to experiment again and again and again. lol Laugh or no laugh, the sound just stuck. He was my hummingbird -humming all day it seemed at times. And here lately, he's the snob. His "emphysema" has been refined into an arrogant sounding "A-heeem" or "A-hmmm" or "A-huuuum" (with just the right amount of snobby undertone). It's not just the new experimentation of noises but the increased vocalization to express himself as well. He cries when he doesn't get his way (and he definitely knows what he wants and doesn't want by the way). If I'm walking him by hand and steer him in a direction other than what he wants, crying. If I put away his barn toy, crying. If I steer him away from his barn toy, crying. If I offer him a sippy and he doesn't want it, crying. If I give him peas on his tray without grilled cheese, crying. As terrible as it sounds to be applauding's not. I'm just happy to get his opinion and I can deal with the fits. :)

Overall, he is also much calmer. I have yet to see one of his crazy bursts of energy. I always suspected that behavior was associated with seizures. I can't even describe in detail what that involved. He was completely unaware of anything around him, he'd get worked up in this state and dance around in circles, stomping his feet and basically just going nuts. If he was sitting he'd kick like mad and you could just tell he wasn't in control. He does have his moments now, where he zones and exhibits seizure like behavior, but I have not seen one of those fits that I described since surgery. And this may seem small, but it's one of the first things I noticed after we got home and settled. He doesn't continuously kick his feet in the high chair anymore. He was always either kicking me or kicking his leg all the way up to the tray. Up and down from the footrest to the tray through the whole meal. It wasn't unusual for me to have bruises all over my thighs from this. Hasn't done that once. He just sits nicely with his feet properly positioned on the footrest. I wish he was still as calm as he was the first week when we got home. He would sit and watch TV, let me hold him as long as I wanted, cuddle up to me in bed and rest his head on my shoulder. He's much busier now, in part probably due to his energy level, but partly due to the seizure activity as well. Regardless, it is still not the level of restlessness he had before surgery.

Trust me, there is more, but this turned out much longer than I had planned. I've been meaning to do this for weeks now, and after the series of depressing posts, I thought it was time to let everyone know it's not all tears here. Sure, we're disappointed he's still having so many seizures, but I'm still oh so grateful to see so many improvements elsewhere.


Jenna said...

Hi Austin
My name is Jenna and I came across your site. u are a brave courageous fighter, and an inspiration. U are a hero. U are full of spunk and life. U have a great shinning smile that beams from ear to ear. U will be in my thoughts.
My site
I have a rare life threatening bone disease.

Sophie's Story by Elaine said...

And why I never regret the surgery. Because the cognitive improvement amazes me. This makes me so happy that there is an up side to Austin having the surgery. This brightens my day.

Anonymous said...

Holli, I am so happy for you and little Austin. Smiles and laughter can definitley help you get through even a bad day. I have hope and faith that Austin will overcome this. Keep thinking that and it will come true.

JSmith5780 said...

Where is the like button?? WOO HOO!! Go Austin! Sounds excited for all these great improvements.

happy's mommy said...

Such a beautiful heart-warming post! These moments of joy in between the moments of everything else...they just carry me and renew my strength. His smile is beautiful! The joy on his little face...make me just wanna squish he cheeky-weekys!

And I think it's so fascinating about his balance. Trevy was the same way. Before surgery it was like he almost didn't really know where his body was in time and space. It was by pure luck that he was able to stay upright most of the time. But immediately post surgery...he had SO much more body awareness. It has radically changed our lives! I'm not de-baby gating the house anytime soon. But I can at least hold his hand while HE walks up the stairs now! I think someone should do a study on this issue!


devon said...

Holli, that video of Austin made me tear up. Oh my goodness, he looks great and that laugh is so precious! I texted Brenda...she will definitely see the video! Praying for you guys!

devon said...

Holli, that video of Austin made me tear up. Oh my goodness, he looks great and that laugh is so precious! I texted Brenda...she will definitely see the video! Praying for you guys!

Anonymous said...

Holli - I think of you and Austin often. I am so happy to hear the postive changes. You are such a wonderful mother! We will keep praying for you guys. Katy