PURPLE DAY.....

I wore my purple on PURPLE DAY..... did YOU????


That's not all.....



look what I did......



my FIRST (and only) one.....

in honor of   MY HERO       

I love you Hannah.............

hard times...

Hannah is really having a hard time titrating with Vimpat.  I am not sure what is going on.  When we initially started it, she started having non stop seizures and seizure activity.  Dr Neuro backed way down on the titration schedule and we re-introduced it much slower.  At first, the second go around seemed to be fine, but now it's not.  She has started seizing more again, behavior is ramped up and she is sleeping in school.  I mean really sleeping.  They have an area in the back of the room for her to lay down and she sleeps for a couple periods at a time.  ugh.  They are frustrated,  I am frustrated , and I know Hannah is frustrated!!!

I have called the dr again.  twice now...  haven't heard back (also quite frustrating)...  I don't know if we will keep trying with the vimpat.  And, I have no idea what will be the next poison of choice.  I am bringing up the vns to him.  I really think it's time to give it a try.  Maybe we can make it through puberty in one piece with it....

As hard as this is...  I had a reality check this morning when I realized a child with epilepsy (and other medical issues) died last night.  He had back to back to back seizures and then just quit breathing.  He could not be revived.  I ache for the family.  He was only 6 yearrs old.  Riley and his family were raising money for him to get a service dog from 4 Paws for Ability.  I lift heart felt prayers to the Stacel family....

where has the time gone???

Wow.  I can't believe it has been a month since I have blogged last.  Time really does fly by!!
My baby girl is now an 11 year old young lady.  She had a couple great birthday party's and was so happy with all the hoopla!!
She had a birthday slumber party... whew... 7 giggling girls!!! 

Present time!!!

The whole gang...

We had planned a face painter and balloon artist to come and entertain, but she cancelled the day of because her whole family had the flu... so i had to (quickly) come up with some ideas... I got tshirts and let everyone have at the paint!!!  It was a lot of fun!

Hannah's masterpiece....  :)

The next week, we had a birthday party at my parents house.  Nana gave her a very special necklace.

Cheerleader birthday cake!!!!  oh yeah!

This was a military appreciation event we went to.  I love this pic!!!

Seizures have been crazy.  We had increased her Depakote one more time and it really wasn't helping her seizures. She was still wetting herself and having her night time jerks.  So, Dr. Neuro decided to add Vimpat to her pill regime (now on Depakote, Klonipin, and Vimpat).  They gave me the titration schedule which I started a few days later.  I really dragged my feet.  I LOATHE medications changes... additions... subtractions... whatever.  It always sucks.  So, we started the titration on a Saturday.  By Monday, I could tell things were not going well.  By Tuesday, she was pretty much seizing non stop.  By Wednesday, she was still seizing and her behavior was through the roof.  It was AWFUL.  I had stopped the med and had my SOS call to the neuro office.  They called back with a new titration schedule.  We were going to stay on the med but start it again, much, much slower.  She is SOOO sensitive to med changes.  So far, so good....  She is increasing Vimpat every three days, slowly working up to therapeutic dose.  She is still having seizures.
I have been revisiting the idea of the VNS... vagus nerve stimulator.  Talking to parents whose kids have had the surgery, researching on the internet, dusting off the old epilepsy books again....  I am going to talk with Dr Neuro about it.  (I haven't addressed it with the new doc)... I am interested to see what his take on it would be.  Every single person I have talked to, seizure relief or not, has said it has improved their mood.  Their kids are not early as moody after the surgery.  hmmm... interesting.  About 50% of them have had a huge decrease in seizures.  I know it's not a cure.  I know that.  BUT, if it can give some relief, and help her mood... I am thinking that is a good thing!!!  To be continued with this topic....

I am also getting all of Hannah's documentation together to go for a consult in Chicago with Dr. Laux.  She is THE expert on Dravet Syndrome in this country.  Even though Hannah does not have the gene mutation, Dr Neuro still thinks that Hannah has Dravet.  So he really wants us to go visit her and get her opinion.  They want a lot of documents.... I am working on gettting those together, and then they will schedule her appointment.
We are also working on getting her psychological testing done.  All of her teachers really feel like she has had a lot of regression and isn't doing what she used to be doing.  I don't know.  I really think she is just having a lot more seizures that she had been.  That will look like regression.  We will see....

AND.... the arm.  Hannah's arm is continuing to heal nicely.  In January, she went from the long arm cast to a shorter cast.  Then, in February, they felt it was healed enough to switched to a brace.  It's nice because she can soak in the bathtub without anything on her arm!!!  She hasn't done that since Thanksgiving Day!!  In March, she is allowed to go without the brace; this makes mama VERY NERVOUS!!!  She still has a rod in there, afterall!!!!  The rod stays in until June.  Her arm should be completely healed by then and the rod will come out.  This will involve another surgery, but hopefully it goes much smoother than the last one....

Whew... that was quite an update....  I will try not to be absent as long next time!!!

big day....

HAPPY BIRTHDAY HANNAH!!!!!!

I am having a hard time with her turning 11.   How can that be possible???  I have really been thinking about the day she was born.  We had a snow storm just like we had yesterday the day she was welcomed into this world.  She got a great present already... NO SCHOOL TODAY!!

We are getting ready fof her party tonight.  She is having 7 giggling girls over tonight.  I have arranged to have a face painter and balloon artist to come.  She is sooo excited!!  I think it will be loads of fun....  I will be sure to post pics later!!!

We had a fabulous neuro appt yesterday... I will post more about that later...

pics...

MAMA GOT A NEW CAMERA... OH YEAH!!!  So, indulge me, while I practice!!!

AWWWW!!!!

Such a handsome boy!!!!

What a yawn!!

This is Hannah's favorite spot to "pet" Blitzen.

He likes it too!!!

He is alerting Hannah to a seizure....

He's getting his reward...a stuffed squeaky monkey!

LOVE this pic....

Sweet shot...(she was pretending this blanket was her wedding dress...)

And onto some cheers....  :)

AWWW!!! love this pic with daddy!!!!

definite progress...

WOW... It's been awhile!!!  We had a fantastic Christmas.  We were able to spend the day together, play with new toys and enjoy each other!!
Hannah's seizures continue to be fairly well controlled (knock on wood).  I keep waiting for the "honeymoon period" to end.  She hasn't had any tonic clonics or myoclonics in the last month.  She has had a few absence and complex partials, but nothing like it was before the big increase in meds.  We go back to see Dr. Neuro at the end of the month for a follow up.

I think Hannah holds the record for the number of casts for a broken arm!!  She just got her NINTH cast today!!!  Today was different though...  Her arm has healed enough that she able to go into a cast BELOW her elbow!!  (She has been in a long arm cast since Thanksgiving Day).  She is tickled pink, but was having a lot of discomfort because it's been awhile since she straightened her arm!  Her joints were screaming!!!

She will be in this cast for three weeks and then she will go into a brace.  Hannah will have to wear the brace until June, when she goes back into surgery to have the rods taken out.  But, at least it will be removable so she can shower...

She is counting the days.... soon she will be ELEVEN!!!!!!!!!!!!  How is that even possible???????  I really don't know.  ugh

surgery...

Last Wednesday Hannah had surgery on her arm.  What a time we had.  Things didn't go completely like we had planned (but then again... when does it ever???)
We arrived at the hospital, same day surgery, at 11 am.  Of course, she was fasting, and not happy at all.  I will NEVER, NEVER, EVER again be "add on" status.  ever.....  It was one of the longest day of our lives.  The surgeon was done with his afternoon surgery at 4 pm.  Still waited... and waited... and waited some more....
At 6:30, Same Day Surgery was closing.  We had to go somewhere.  Dr. Ortho wanted us to stay in a "holding" area, so we were as close to the OR as we could be.  As we learned, the surgeon was ready, the OR was ready, but there was no staff...  How can they have THIRTY-TWO OR rooms and not enough staff??????  SOOOO frustrating.  About 6 pm I requested them to give her fluids in her IV that she had placed in her arm, ALL DAY... Hannah was dehydrated.  Her poor little eyes were sunken in.

FINALLY at 8:40 PM, they came in to take her to the OR.  unbelievable.... truly.

Her surgery itself, went great.  It took about two hours.  He placed a pin (rod) in only one bone (the other one had soft bone and had actually started healing.  (We had decided to put a long arm cast on her after surgery so she would have more protection).  He felt the cast would be enough to help the smaller bone heal.  I was very much surprised to see the rod goes from her pinky finger to her elbow.  I had no idea it was going to be that long.  So she will wear the cast for 6 weeks.  Then she will wear a removable cast for 5 more months.  In June or July, Dr Ortho will go back in to remove the pin... Then she will have physical therapy for 3 or so months.  The way I figure, that will take us right back up to Thanksgiving!!!!  Who knew this would be a year long process????

Post op was crazy...  Hannah normally handles anesthesia well, as long as they don't use gas (which they didn't).  She woke up too soon after surgery and was really having a rough time.  She wasn't able to keep her O2 saturations up.  They started her on her BI PAP and added in oxygen. 

We finally got up to her room at 1:30 am.  We were on a trach floor so the respiratory therapists(RT) were right there... We had a WONDERFUL RT!!!!  Tera was sooo good to Hannah.  There wasn't anything she wouldn't do for our girl!!!  Thanks Tera, we appreciate you more than you will ever know!!  Tera continued to wean her oxygen down through the night.

By 8 am the next morning, Hannah started swelling and turned very flushed in her face.  Then she started itching.  They called in the dr.  He felt like she was having an allergic reaaction to something they gave her during surgery.  We will never know what that was....  Then about 1 pm, she started to have "wet lungs" and wheezing.  ugh  Hannah is not a wheezer....  We started breathing treatments.  We think she may have aspirated during surgery. 

Late Thursday afternoon, Hannah seemed to turn the corner and started feeling better.  We spent another night just to be sure her O2 sats were staying up.  They did.  98% all night!  So, we were able to go home late Friday morning.  yay!!!  It was quite the surgical experience....  She usually never has these issues with anesthesia.  I think maybe she was in deeper sedation and the longer surgery caused some of the oxygen issues.  still not sure.  It was really scary though. (what scared me the most when Hannah woke up in recovery, the very first thing she said to me was... "MOM, I CAN'T SEE... I CAN'T SEE!!!!"  WWWHHHAAAATTTT???????  Then she said, "MOM, I HAVE DOUBLE EYES, I HAVE DOUBLE EYES!!!!".  Then I knew she was having double vision.  whew.  That'll scare the poop outta anyone!!!

She rested all weekend and is doing so well.  It's weird to think that with that big ol rod in her arm she is virtually pain free!  (she hurt so much the first 3 weeks...)  It's finally stable.  Her bones aren't moving all around anymore.  Healing has begun!!!!

shifted...

Hannah had rough weekend full of broken arm pain...  I continued to give her pain pills to help take the edge off (she hates taking them because they knock her out).  I went back and forth. but finally decided to take her back in to see the ortho this morning. (we were just there on Friday... holding steady, no change).  However, today was a different story....

Her bones shifted again... BIG TIME.  They shifted 20 degrees in addition to what they were before!!!  ugh.  He said her bones will not heal straight on their own.  She needs surgery.  The dreaded words I was sooo hoping to avoid.

So, we go in Wednesday... Dr. Ortho will put two pins in.  She will have an incision by her wrist and one by her elbow.  She will have a removable cast.  The pins will stay in 6 months and then she will have another surgery to remove the pins.  yuck...

Nana is coming down to go with us, per request of Hannah.  She is scared.  This is out of her element.  Give the girl anything neurological and its piece of cake!  But this is something new and different.
I think we will be spending the night and I am glad for that.  With all of her underlying conditions, I think it's a good idea.  Not to mention they can really help with pain management...

I will keep you posted.  Hopefully this will do it!!!  I pray she can finally start healing now...

Happy Birthday Blitzen!!!!!!!!!!!!!!!!!

Blitzen turns 4 years old today!!  He is sooo awesome.  We ALL love him so so much...

A doggie birthday cookie!!!

He couldn't wait!!!  We were singing Happy Birthday to him!!!

Chowing down!!!!

AND... Hannah got a new cast today.  PINK SPARKLY!!!! Oh yeah, baby...  I THINK we have avoided surgery, unless she has a bone shift.  She doesn't have any bone growth yet, but the doctor's are hoepeful....

Check out all that sparkle!!!!!

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....)

frustrated....

Hannah has wet her pants almost every day, several times a day, since July....  We get to the hospital, all hooked up to leads, me... very excited to see what these seizures look like... and what happens????






NOTHING!!!!!!!!



UGH!  This is confirmation that one, this is not a urology problem and two, these seizures are also brought on by stress and over stimulation.  There is still hope, but it's fading fast to be honest.  I get so frustrated when we go to all this trouble and don't see her seizures.  She does continue to have almost constant spike and waves in her left frontal lobe (that's on full dose of meds).  They just aren't breaking through.  Apparently nana and I are not stressful enough!!!!

So we wait....

Please wait and PRAY with us.  We need to know what these are and where they come from....

EMU

Tomorrow....


off to the hospital we go.....


Praying we are able to see what these crazy seizures look like, where they are coming from, how often... you get the idea....


I will keep you posted...

~~what a week~~

Hannah and I went back to see her neurologist yesterday.  She was totally out of control.  I think we would have ended up in ER if we didn't have an appointment.   We all agreed this increase in Depakote was toxic to her system.  So, he lowered her dose back down and added in Klonopin at night (and also to use as a rescue med for clusters).  I think they are just buying time.  We are waiting for the Dravet results (hopefully will be back in 2-3 weeks).  If she is positive for it, then Dr. Neuro will be changing her meds all together.  So, he didn't want to change anything yesterday just to potentially change it again in two weeks.  I agree.  So, they want us to go back in two weeks to see how she is doing.  He also decided to put her in the monitoring unit to see what these seizures look like, how her EEG has changed, how many... and so on...  I have to admit, I am anxious to see how her EEG has changed.  They were able to get her in next Friday, the 22nd.  This should only be a 3 day stay... Hopefully seizures WILL cooperate!!!

She is already better today... MUCH better.  Amazing what lowering her dose did for her!!!  wow.  I still kept her home from school just to make sure she was more stable.  So happy she is feeling better...

still seizing...

Hannah cannot catch a break from this increase in seizures...  She is having a rough go at night with tonic's and tonic clonics; and a rough time during the day with absence and complex partials....  When she got up this morning, she was acting drunk.  really drunk....  I called her aide at school and gave her a heads up and sent Hannah to school.  The aide called me later, apparently the first half of the day wasn't too bad, but after lunch, nothin but seizures.  She was so out of it.  And then she fell asleep and they couldn't get her to wake up.  So, we brought her home early.

I called neurology again this afternoon.  They want her to come in on Thursday.  We may be looking at a med change...  I am hoping for an increase....