it's been awhile...

It has been very eventful lately... First, let me say, Hannah seems to be in a good spot, seizure wise.  (hate to even say it outloud...)  I think we have found a good medication combo.  She has only wet 2 times in the last week and only one complex partial seizure.  HUGE!!!!  and very exciting!!!!  I pray that it stays this way for a little while and give us all a little break....

Speaking of break...  (hehe)

We traveled to Alabama Thanksgiving week to visit Gary's parents.  We got down there fine, survived the 12 hour drive.  We always drive through the night to make it easier on the kids (misery on us).  Thanksgiving morning Hannah and her cousins were playing at the playground area in grandma's housing development.  Hannah fell off the monkey bars and it was very evident she broke her arm.  She may of had a seizure when we fell, we really aren't sure.  We raced her to the ER at the very rural community hospital.  The hospital took such good care of her.  The xrays showed that she broke both bones in her arm; ulna and the radius.  It was a very ugly break.  They would have to take her to the OR to reduce (set) her bones.  Many hours later, we went back to grandma's house and finally had our Thanksgiving dinner!! (we didn't leave the hospital until 5 pm that day...starving!!!!)

They put her in a full arm cast, but split the cast and wrapped it in an ace bandage.  Now we had to figure out how to get this girl home, in a lot of pain, a 12 hour drive home...

We ended up splitting the 12 hours up into 2 days.  We stayed at a hotel the first night and drove the last 6 hours home the next day.

The following Tuesday we saw our pediatric orthopedic.  He thought the Alabama doctor set her arm very well. But, he felt we still weren't out of the woods that she may still need surgery.  A five year old kid would heal nicely, an adult would no doubt  need surgery, but she is right in the middle.  An almost 11 year old girl's bones don't grow as fast and may not grow as well...  So, if her bones shift any at all, she will have to have surgery.

her favorite colors!!!!!

We went back to see the doctor this morning because she started screaming every time she moved her arm.  Obviously something wasn't right....  They got us right in, did another xray... Her other bone, the one that lined up nicely when they set it, had shifted.  big time.  Now, it looks as bad as the other.  GREAT.... ugh
We are getting very close to approaching "aggressive measures."  There was no healing (in fact, we went the other direction).  She has to keep it in the sling, increasing her pain meds and go back in a week.  I think he will make a decision next Friday as to what we are going to do....if we will be heading to surgery.  And, oh, keep her still...  YEAH RIGHT!!!  he has no idea.....

spoke too soon...

UUUGGGHHHH!!!!

Well... at least we had some seizure relief.  Hannah just had a seizure where she soaked herself.... 

Here's hoping it was a fluke???



even though I know better......

Still doing well!!!

Hannah has only had TWO seizures in the last week!!!!!!  WOW!!!!  We are either in a nice "honeymoon" period of just increasing her meds OR we have finally reached a place that works with her body!!!!   It is so nice to have a break.  I hope it lasts for a little while....

Negative....

The results are in.... she tested negative for the gene mutation....

I am still not sure how I feel about it.  I was hopeful, REALLY hopeful, to finally have a name...

So, according to Dr. Neuro, she will not have the diagnosis (meaning, he is not going to clinically diagnose her with Dravet Syndrome), but he is going to medically treat her like she has it....   hmmm....  not sure I totally get that. 
We are going to continue to increase her Depakote to try and maximum effect from it.  And, she is now taking it 3 times a day. We may be increasing her Klonopin at night as well... 

The good news is.... we have seen (in the last 4 days) a huge decrease in seizures!!!  She had a big whopper of a seizure last night, but before that, she hadn't wet herself in 3 days!!!!  So I am hopeful this much loved freedom, will last.  Chances are, because of knowing her past, it is honeymoon period from raising her meds.   But, even if it is, I WILL TAKE IT!!!!

It's November!!!

And that means.....

IT'S EPILEPSY AWARENESS MONTH!!!!!

So get out your purple and support all the very brave kids who fight the seizure monster every day!!!!!

btw. STILL no phone call regarding Hannah's genetic results... STILL waiting.... not so patiently.........

and the verdict is....

we don't know yet....


UGH!!!

Results are NOT in... They should be there tomorrow or Monday.  So we wait... some more....

Dr Neuro decided to add an afternoon dose of Depakote.  So she will now get a dose at lunchtime.  We did labs.  They wrote a script for pull ups.  We can get them through DME (durable medical equipment) company.  They think between our primary and secondary insurance that the pull ups will be covered!! YAY!!!

so, for now, we keep on waiting....

home again...

We left the hospital on Monday morning....extremely frustrated.  No seizures or wetting whilst at the apparently, too fun to be at, hospital!!!  She still had the same abnormal spikes and wave slowings in the frontal and temporal regions.  This was mostly on the left side, but some on the right side too...

I really did not think these seizures were brought on by stress and over stimulation.  I was wrong.  She went to school yesterday and started seizing and wetting again.  ugh...  (no big surprise though)... She has started wearing pull ups now.  Morning and night.  She actually likes them better than poise pads.  Now I am searching to see if I can find help in paying for them...If anyone has any secrets, do tell!!!

So, tomorrow we go to neurology for her follow up.  Good news is, she has finally adjusted to the increased dose of Depakote.  I really think the behavior and increased seizure issues a couple weeks ago were because we increased too fast.  She has leveled off back to her normal...

We are hoping (keeping our fingers crossed) that the Dravet report is back.  It will only be 4 weeks, but the Dr. felt there was a good chance it would be there.  I am SOOO NERVOUS....  If she is positive for the gene mutation, more than likely he will change her meds completely (now that we are leveled off!!).  There is a good combination of medications that work well with Dravet kids.  If she is negative for the gene mutation... I have no idea what's next...  I guess that's what Dr. Neuro gets paid the big bucks for!!!  I feel like we will be back at square one....

Hopefully tomorrow is THE day.... the day we find out (after 9 years of searching) what syndrome Hannah has....  (BTW... still feel very torn as to how I feel about this... I will be absolutely relieved to know...but devastated with what it is.  Not a great diagnosis at all....)