My loves

My  loves
Our family

Thursday, September 27, 2012

EEG is finally over!

that was the longest 48 hours Chuck and I have ever had...he was nice enough to sleep during the day and let me sleep at night!  Our 5 day vacation earlier in the month seemed like 2 days and this 2 days felt like at least 5!
  I think she showed off a lot.  She had a few of what we know are seizures.  We clicked a button everytime she had a seizure, or we thought she did.  There appeared to be a lot of activity.  The EEG tech only told me that she got a lot of info for the dr to go over.  She wouldn't tell me more although I think she knows.  Hannah wasn't even hooked up an hour and already slipped the gauze off her head!  So they had to come and re wrap it.
Hannah all hooked up, had to add the bow to keep up her reputation! LOL

The bow ended up holding back the piece of gauze by her face.  This morning she got really hyper and started pulling off the gauze, I think she was ready for it to be done!  She was so hyper she pulled on the vent and her trach came out.  Not sure why she was so hyper but will be interesting to see if that is a seizure.
  We had to wait for neuro to come see us after they took it all off.  He didn't come for 2 hours, walked in introduced himself, asked what we had done, wanted to know if we kept a log, no, we were told we didn't need to.  He said you should hear in about a month. didn't even look at Hannah and walked out.  Needless to say, we were all upset!  The attending  dr couldn't believe it.  We finally got out of there about 1:30!
  As usual, we saw a lot of friends and met some new ones among the staff but didn't get to meet any one else since we were stuck in the room.  WE did get to walk the halls for about 1/2 hour while she changed out the machine.
all done, waiting to get her hair washed!
We had to buy the  button down shirts since that isn't her normal style.  They couldn't take anything over her head once she was hooked up.

Saturday, September 22, 2012

Hannah 48 hour EEG...grandbabies and more

Isn't that an exciting title?  We are really looking forward to it....NOT!  :)  The EEG starts on tuesday morning through thursday morning.  thankfully chuck is going with me so I can sleep.  He will do most of the night shift since she appears to have less seizures during that time.  We are at the point where we don't know what is a sz and what is not.  I would like to think that it's more likely not sz we are seeing but sometimes I think she almost has continuous ones...hopefully it's not!  the paperwork says when we think we see a sz we have to take her blankets and socks off and say what she is doing.   I think we are going to be worn out by the time it is over...chuck got invited to go to a Raven's game thursday night after it's over, I am glad he gets to do something fun, it's been years since he has gone to a Raven's game.
  In November Hannah is starting the ketogenic diet.  She will be in the hospital for 5 days while they start it and fine tune it.  Hopefully it will stop some of her seizures and/or allow us to take her off some of her seizure meds.  She is still on 5 sz meds right now and that is too many!
  We had a pretty quiet summer, didn't go out much and didn't go to dupont all summer but now we are making up for it.
Hannah's shirt says Attitude is everything!

 We celebrated Taylor's 4th birthday on labor day weekend...she was actually born on labor day, we had joked about being in labor on labor day and she really was (5 days early).  got to see all 3 of my grandbabies that weekend...they are getting so big.

not sure of taylor's expression

Logan, Tyalor and Jonas