Tuesday, December 13, 2011

So, the good stuff first. Hannah and I went into clinic today and delivered the gift cards from our gift card drive. We delivered 15 $50 gift cards, a total of $750 for families in need. THANK YOU everyone for your donations, these special kids fighting this terrible disease will be a little happier this Christmas season. The families will feel just a little lighter from their tremendous load, and that is what this is all about now isn't it? Thank you!!

Gift cards!!

Now for the medical stuff. Hannah was hooked up last weekend with the portable EEG. She had it hooked up last Friday afternoon around noon and we were to keep it on until Sunday, but could take it off earlier if she experienced several of the eye episodes. I say "we" like I was wearing it, but she was the unhappy recipient. Here are a few pictures, they had her head wrapped up like she had brain surgery! The leads, 23 in all, were attached all over her head, and two to her chest. These wires came off the back of her head and hooked up to the EEg machine, which she carried around. I told her she looked like the bionic woman, but she never quite understood that! 

The button

It was pretty uncomfortable, the wrap on her head was tight so that it didn't come off. Each time she had one of the eye episodes she had to push the red button and I had to record it. It didn't seem like a big deal, she had been having 2-4 episodes a day. She didn't have her first episode for 30 HOURS!! I thought I was going nutso, and maybe we had just imagined it all. So on Saturday night around 7pm she had her first one, and the second one followed 20 minutes later.  She wanted to take it off right then and there, but we left it on to try and record some more episodes, since they told us the more the better. She didn't have another episode until Sunday night around 6pm when she promptly announced she was taking it off immediately. It was pretty tough removing the leads, which were stuck in her hair. She said she wouldn't have any hair left by the time we got them all out!!

Didn't stop her from baking!

But she wasn't that happy about it!

 So today we returned to clinic to hand in the portable EEG and meet with all the doctors to go over the results. As soon as we got there, Hannah had one of the eye episodes, but of course there were no doctors there yet. First, our oncologist confirmed that Hannah's latest MRI/MRA results were good, no tumor or any other structural issues which may be causing these eye episodes. A big breath out on that one! The neurologist then came in to say that the EEG produced no measurable seizure type activity, even when Hannah pushed the button and recorded the eye episodes. I wasn't sure if this was good or bad.

Everything off and not happy, it hurt to remove everything!

With the head wrap off

The doctor explained that sometimes this happens, and they thought that most likely these were not seizures. Ok, so what the heck are they? The doctor immediately said she wanted Hannah to be admitted for a video EEG. She explained that the video EEg in hospital would be more detailed, and also allow them to see her episodes through the video. The doctor picked up the phone, and I thought we were headed right upstairs!! They had an open spot for this Saturday (but Sunday is Dave's birthday) or next Tuesday (but that is Hannah's first junior high school concert.) I asked if it was an immediate need, or could it wait until after Christmas. We are leaving to go to Indiana on the 23rd, returning on the 29th. The doctor asked if the episodes had changed, were they becoming more frequent or longer? The answer (at that time) was no. So, no rush, and we scheduled our hospital stay for December 30th. With any luck we would be out of there sometime the day of the 31st and wouldn't have to pop the champagne in the hospital. But, if so, that was ok too.

The neurologist also wanted an optic MRI, which would focus on the optic nerve. The previous MRI had already confirmed that there were no tumors in  her head, so that is good (great) but perhaps something else is going on in the eye that a regular ophthalmology exam could not pick up. Ok, that sounds reasonable. That also means another trip to the orthodontist to have her braces removed...again. She has ceramic braces for this purpose, so only the back 4 brackets and all the wires have to come off, but it's still an issue for her and she cries when they come off and cries when they go back on. We had waited to do braces until we were pretty set with only 6-12 month MRIs, but that didn't quite work out for us!!

So all is set, we head back home. We walk out of the office and Hannah has another eye episode, her 3rd of the day. All is still good. Dave and I discuss the need to get her records together again to send out to our radiation oncologist at Boston where she had her radiation, and her neurosurgeon to get their opinions. It's always good to widen your circle of doctors examining the records, especially when the current doctors don't have any answers yet. Not that they aren't good doctors, but it's possible another doctor has seen something like this before and could help.

Hannah and I get home, we're at the school picking up Colby from her basketball game, and she has another episode. She tells me, I check her out and I think it's over. She walks away, comes back 2-3 minutes later and says it's still going on. So now, we have what looks like higher frequency of episodes, along with longer episodes...both things the doctor questioned me about. So now I'm having a mini freak out moment! That's it, I go outside and call our doctor right away and tell her we want to move up the EEG and MRI to this weekend. Of course now it's after 5pm and everyone is gone for the day. So, we will wait until tomorrow and hope they can still get us in for this weekend. I told Hannah we'll make it like a party, watch dvd's the whole time and play games and cards. I believe she can't get out of bed at all, so I'll be like the Energizer bunny hopping around her bed to keep her entertained!! So looking forward to that!

We'll keep you informed, I hope we have this all worked out and scheduled tomorrow!

♥Kim