Wednesday, November 5, 2008

An eye sore...

The culprit

And with all my "safety rigging", man, what an eye sore -literally.

We had yet another accident today. After last Friday's cut on the eye, I was confident that all of Austin's gear (besides his crib) was now seizure-proof. The lovely walker in this pic (yeah, look harder, it is a walker -kind of hard to tell with all my add-ons) has been quite a challenge. With the attached toys on the tray, it took me weeks to figure out an appropriate "fix". The hard plastic toys (under the attractive purple hand towels -lol) have been a problem since the head drops started. Short of sawing them off (which would leave jagged edges), they aren't going anywhere, so I sought out a way to wrap them for protective padding...something that Austin couldn't pull off and that wouldn't pose another risk. The hand towels and hair scrunchies worked like a charm...until today. Somehow he managed to hit it in just the right place, causing another cut on his other eye. I wanted to cry and scream right along with him, but I miraculously kept my cool. I'm just so tired of worrying about injuries! I found some protective helmets online last night. Chad and I are considering getting one. They are definitely not cheap, so we are going to wait and see if the vigabatrin helps any before buying one. I'm not sure if our insurance would help in paying, but I'm hoping we won't need one at all soon.
To follow up from yesterday's post...I finally got a call back from the nurse this morning. Well, she called at 4 pm yesterday but just to get the info to talk to the doctor. I didn't get the call back with the doctor's opinion (or lack of opinion) until this morning. What a joke. I seriously don't think my questions and comments were relayed accurately. All I got from them was the appearance changes over time. Another bit of garbage she told me was that it sounds like tonic-clonic seizures to her. To her? Who cares what she thinks! I'm not paying for her opinion! Anyway, I said I caught some seizures on my cell phone and wondered if I could email them...Nope. I have to send them by mail. She said not to email or fax any more than we have to to limit personal info "floating" around. UGH! No, I think it's to make just as difficult as they can on the parents. I'm going to buy a fax machine today so I can fax my questions and have the doctor read them himself. They're just going to have to deal with it. I'm also going to "mail" Mr. Epilepsy Guy a letter just as soon as I have time to type one! How am I supposed to address my concerns when we only have appointments every 3-4 months? They certainly don't give me adequate info between visits or keep communication a priority. I hate hospitals!!


jamie said...

Sometimes they would get us in sooner than every 4mo but I hear ya...Its always a "via telephone" thing..
Tonight we increase her Depakote and still hope for the best. *whew*

OH that toy! eeek! Well maybe its just time to retire that Poor kid!
Thinkin about ya.
Off to work I go now. gah!
To answer your Question "Bay City TX" is where hubby is till Sunday.

Anonymous said...

Would you ever consider putting up a link to a paypal account so people could donate to Austin's medical piggy bank? I think there would be people willing to donate whatever amounts they could to help provide for his needs, like the helmet.

From a supporter of your family

Reagan Leigh said...

Keep in mind...this nurse just recently started working in neurology in the last year or so and when she started I knew far more than she did (as an informed parent). She also LOVES to give HER opinion about everything. When talking to her make sure she distinguishes between her opinion and his opinion. I would always request to speak to the doctor himself (especially about important issues). They use these nurses as a screen so that they have to do less work...but they are the doctors and they need to just do their bleeping jobs!!! OK, enough ranting.