Monday, September 22, 2008

Enough Already!!!

When I posted yesterday, it was a normal, typical day for Austin. Of course, he was having his usual number of spasms, but I've learned to deal with them as part of everyday, that doesn't mean it doesn't bother me, but I've somewhat accepted the fact that it happens. Every single one makes me cringe, but then we move on. The fact that Austin usually smiles afterwards, helps reassure me that they aren't "hurting" him...I mean "hurt" in a short-term, physical sense. I know they don't cause him physical pain when they are occurring. He sometimes has the mild ones where if you didn't spend much time with him, you would probably never notice. Sometimes it only involves a slight quiver of his bottom lip...but Mommy knows!! Then there's the full-fledged slams where he thrusts his entire upper body down with a lot of force. Those are the ones that will do some damage.

So, last night I was buzzing around the kitchen chopping, cooking, and so proud of the bubbling dinner I had on the stove. Austin was scooting around in his walker and I was singing along to the radio. It was an ideal Sunday evening in the making.

Then came the SLAM...Now, I have the toughest little boy I've ever known. He's been known to make a "slam" onto the toys attached to his walker and look up and smile at me. This time was different. It was so quick I couldn't even tell where he hit his head. There was instant screaming, followed by a moment where he couldn't even catch his breath. I felt like crying right there with him. I realized he hadn't just bumped his head. It was his eye. I kept looking and looking last night just waiting for a black eye to appear. Nothing so far, thank goodness.

That was the final straw, so to speak. I am furious. I will become his neuro's stalker if I have to! If she will not prescribe the Vigabatrin, I will find someone that will.

UGH!! Enough already!! I'm tired of these spasms ruining what should be normal activities...he can't stand near a coffee table, he bonks his head on restaurant high chairs, he can't crawl or sit on anything but soft carpet or a bed, he can't have anything but soft, plush toys in front of him unless someone is holding him...and it makes me a nervous wreck thinking of him standing in his crib -which I cannot prevent. There's no warning, no predicting when these things will hit him. It's dangerous and it is taking away from him doing the normal things a baby his age should be doing.

What am I going to do when he starts walking?? Confine him to a padded room??? I can't bear the thought of him walking around and BAM! fall onto the hard floor. It's not the usual anxiety of a new walker...I can't just watch him and say, "Austin, don't do that, you'll hurt yourself!" You just don't see these things coming.

Look at me...I'm trying to predict the future again! I tend to do that...assume that this or that is going to happen and what I'll do when it does. I've been wrong about a lot since this started. One valuable lesson I've learned is that you have to take everything as it comes, because it's impossible to prepare for the unknown. That's the tricky thing about IS. EVERY BABY IS DIFFERENT and NOTHING IS CERTAIN. There's no right med or even a right dose. There's no certain prognosis. It's all trial and error...

A parent's worse nightmare.

As a parent, it's only natural and instinctual to want to help your baby. It's agonizing to see your baby sick and be completely helpless.

Guys, I really and truly try to stay positive as much as possible. There are times, though, that I question my abilities and strength to get Austin seizure-free. A night like last night can leave me with such a sinking feeling that I go back to square one emotionally....

BUT, how does that help Austin?

So, I will wrap up my little pity party and quit trying to read my crystal ball! Stressing about the future may be stressing for nothing, right?

Enough already, Holli!!!

btw -Sorry for being a Debbie Downer...just needed to get some of those thoughts out was like my own therapy!! :) From now on, I will try to stick with exciting news and updates on Austin only!! ;)


JSmith5780 said...

IS isn't all happy smiley stuff, so why should you feel sorry about venting on your blog. That is the place to do it, so other IS parents can commiserate with you. Because we completely get it.

You said you're in CT. Do you get seen at Yale or at Hartford? Have you considered going to Boston Children's?? They will prescribe Vig. My son was on Vig for about 4.5 years. It stopped his IS in 4 days. Then controlled his myoclonics also. We never had any vision issues because of it. For us it was a GREAT med.

Any questions, just email me. My contatc info is on my blog.


Molli Salzman said...

Hi Holli,

I got Austins page from the IS board. He sure is cute and progressing quite well in spite of the spasms. I would get a different neuro if she is not willing to try Vig.
He is your son--do what you think is right.
My son Charlie is 13 months old today and was diagnosed with IS at 6 months. You can go to hs page at and search for CharlieSalzman(all one word)

Take care,
Molli Salzman