I took the kids to a VERY busy photo studio last night. We purposely scheduled the last appointmnet of the night so Hannah wouldn't be overstimulated and because we have a dog. That equals a kid magnet!!! But, it was pure chaos and they were behind (everyone is getting their kids Christmas pic taken). A small meltdown, a Blitzen alert, a small complex partial, lots of little hands in Blitzen's face and an hour and half later....it was our turn!!!! BUT, the pics turned out GREAT. Thanks to Danielle once again. The kids know her now and she LOVES Blitzen. She always spends extra time and is patient with everyone.

Update on second opinion......We have decided to give Riley Children's Hospital a whirl. I called her pediatrician yesterday (who is just as frustrated) and she is making the referral. They are scheduling into the end of February though. So, we will have to hang on until then....Her pediatrician also wonders if we need to go somewhere bigger...pull out the big guns....Mayo, John's Hopkins, UCLA?.... Maybe someone has seen someone like Hannah before????

montage of thoughts....

Hannah started having some rough days again. I am not really sure why. I was really hoping that, with starting this new medication and being covered by diazepam, things would continue to go well. BUT, once again...Hannah does not, and probably never will, read THE manual. Poor Blitzen has really been working overtime. Thursday, he alerted a record 5 times... She was totally out of it all day at school. They said she was in slow motion; having obvious processing and comprehension difficulties.

We went to her neurology appointment on Friday. It went pretty well; I guess. There is something that just isn't sitting right in my "mama gut." I have decided that we are going to get a second opinion. I really feel like we are missing something (I have felt like we have always been missing something, but I feel, here lately, we are missing more...In the last 6 months she has been having so many changes and I just feel, we are missing something). So, I will start making some calls tomorrow. I have decided to go to Riley Children's Hospital in Indianapolis. Hopefully, it won't take too long to get an appointment....
So, for now, the plan stays the same. She is taking fluoxetine. In two weeks, she will start back on Depakote to hopefully get some sort of seizure control. Then, in about 6 weeks, we will change her dosage and fequency of her clonidine. This should help her sleep cycle. One change at a time. Seems to take forever, but oh so important...

This weekend, my parents came to visit. They helped us put out our Christmas decorations. I really appreciated the help. The house, inside and out, looks FANTASTIC!!! I just want to sit, in the quiet, and enjoy how pretty the house is....

Saturday was another VERY rough day for Hannah. It was tough for my parents to witness it firsthand. ALL DAY LONG.... Blitzen alerted 4 times and was bang on, as usual. He is so awesome!! We had to give some rescue meds towards the end of the day. Today, was better, but still had 2 alerts....We REALLY need to get to the bottom of this craziness!!!!

looking up....

This past weekend we made a trip to Columbus for the Army's reunion briefing. Yes, that means we are getting close to our reunion! YAY!! Of course, the big elephant in the room was....when our the troops going to be home??? And of course...they wouldn't say. I do understand it is for security reasons, BUT, it is really hard to plan anything with only 48 hours notice. We are hoping the reunion ceremony (which will be the first time we see him) will happen a few days before Christmas, but may not until after January 1st. I am telling the kids January. Better to be surprised than disappointed. We are planning some absolutely fun, fun, fun things for the reunion (of course, these are top secret too...as daddy may be reading this!!!). There will be tons of pictures later....don't despair!!

We are starting a new medication plan. Thank the Lord!! We are starting 2 new meds and increasing one that she is already on. But, only one change at a time. So, first up to the plate is Fluoxetine. We are hoping this will help level out her behavior swings (which will hopefully help decrease seizures. It's the whole chicken and the egg thing...). In about 4-6 weeks, we will start Depakote. This was her very first seizure medication. She had very low side affects but never really gained seizure control. But, 5 years ago, her seizures were completely different. So were are giving it another whirl, knowing that it is also a mood stabilizer. 2 for one!!! And lastly, we are going to increase her clonidine and give it 4 times a day. Hopefully this will help her to get to sleep and stay asleep. Apparently it really affects sleep cycles if not given at the right times during the day. Good to know!!! Maybe 6 months ago??

SO, she will stay on Diazepam temporarily until these other medications are in her system. Hopefully we can ge things under control...

beautiful story

This story warms my heart.....so beautiful and right before Christmas.

Game Plan....

Well, it seems we have a game plan...  I finally got a return phone call from Dr. Neuro today.  I informed him what took place at our doctor's appointment on Thursday with Dr. Psych.  First of all, to help get through this weekend, (peacefully) he is having her take diazepam twice a day.  Monday the two docs are going to discuss which med to start first: behavioral med or new seizure med....  We will get one of them on board and them in a month or so, we will introduce the other med.  Hopefully this will help her behavior settle down and reduce seizures.  The gradual trend of everything getting worse (behavior, seizures, cognition....) I have seen since August, really puts a pit in my stomach.  I know it has been the lack of seizure meds and probably some hormones thrown in there!!  I am so ready to regain some control and am so glad someone is finally listening to me!!!

Oh, this weekend....we are heading to Columbus for the Army family reunion brief.  So, we are staying in a hotel while we are there.  (this is my first time in a hotel with the kids...by myself!!!)  The kids are very excited to swim in the pool....  me, not so much!!!

Only 7 weeks until daddy comes home!!!!!  YAY!!!!!

tonic clonic seizures have returned....

Things have seemed to be spiraling downward lately.  It is time for changes.  I put a call into Dr. Neuro.  No call back yet.  She had a small tc last night, and a bigger one tonight.  It has been a good while since she has a tonic clonic.  It makes sense when I look back in retrospect; everything has been off kilter....including her behavior.  Her behavior has been progressively getting more out of control.  It has been hard of everyone....Hannah, the boys, and me.  We really need to regain control....

Halloween pics....

The kids had a great time trick or treating this year.  We went to a harvest party where they got candy and great prizes.  Then we went to our town's nursing home.  The residents line the halls and pass out candy.  I love to see their faces.  And they love to see the kids all dressed up.  Some of them almost seem giddy!!  After that, we went to some of our neighbors.....  The kids were tired, but a great time had by all.... Blitzen survived his first Halloween....He was a trooper, staying in his costume, parading around all around town!  Gotta love that dog!!!

All ready to go!!  Hannah is dorothy, Blitzen is Tin Man, Josiah is a knight, and Eli is a race car driver..

Acting silly!!!  How cute are they???

nice background at the harvest party...

At the nursing home...they were a BIG hit here...

the kids with their cousins, Audra and Emma...